tag:blogger.com,1999:blog-47396316509367832312024-03-13T14:36:22.547-05:00Sausage toes and scales. Living life with Psoriatic ArthritisAnonymoushttp://www.blogger.com/profile/02205771369036279889noreply@blogger.comBlogger113125tag:blogger.com,1999:blog-4739631650936783231.post-84871319825113563132018-06-08T23:18:00.002-05:002018-06-08T23:18:38.429-05:00Time to step asideHello all! I know long time no see. I have been considering shutting down this blog for several months. Really since my last post over a year ago. When I started this blog there really was a shortage of Psoriatic bloggers especially on the Arthritic side. Today there are 100s. I know many of these wonderful people from various support groups and forums. They can carry the torch on while I step back and really focus on my own health. I will keep the blog available, but this will likely be my last post indefinitely.<br />
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The Facebook will stay up and I will continue to share articles, new information and such there. <br />
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I feel truly blessed to have all of you interested in my thoughts. I hope you all find a path that helps you and someday brings you to remission. If that isn't realistic my hope is that you can find the path that brings you as much function and joy of life as possible. You can reach me on FB messenger if you are having trouble tracking down info or just want/need someone to chat with who gets what you are going through.<br />
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Thank you all!<br />
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Blessings and Healing.<br />
<br />
HAnonymoushttp://www.blogger.com/profile/02205771369036279889noreply@blogger.com0tag:blogger.com,1999:blog-4739631650936783231.post-41937996036326893012017-04-03T00:28:00.000-05:002017-04-03T00:28:19.595-05:00Here Comes the SunThe heat has been arriving early here in the valley of the sun. We had 10 straight days of 90F in the month of March and it's just way too soon for that nonsense. My psoriasis has always been classified as severe both because of coverage and severity of the plaques and cracking, and I have 3 types of active psoriasis (plaque, inverse, pustular) at any given time. Right now I would consider it moderate personally as even though I have severe coverage, I have minimal cracking, itching and scale build up, and my pustular is keeping to a few small blisters on my palms and feet that haven't affected my ability to walk or use my hands. This time of year is when the ramp up of advertising starts up about how we don't have to be embarrassed by our skin if we would just get this medicine or use this cream. Maybe this special frequency light therapy is all we need to rid our world of the plague of scales and itch. I understand the drive of these commercials, but they've always rubbed me wrong. If it was oh so easy why aren't we all in remission and running around in shorts and tank tops playing golf and shopping?<br />
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I always thought I was pretty ambivalent to other people's opinion of my skin. I didn't go out of my way to hide it, or so I thought. When I started this blog it dawned on me that maybe I wasn't as ambivalent as I had convinced myself I was. In fact maybe I am a huge lying hypocrite especially to myself. When I worked it was in a lab that was always around 65F. This meant that even when it was 100F+ outside I was fully covered in long sleeves, long pants, closed toe shoes. All my spots were covered and I told myself it was because it was cold in the lab. I even bought shirts with extra long sleeves so I could cover my hands past my knuckles which incidentally have usually been my most plaqued and cracked area. That was in my head because my hands were cold, but really if I'm honest with myself was to pull the sleeves past the ugliness. Really lets be honest those long sleeve shirts from Target really aren't thick enough to help heat my ice cold circulation challenged hands. On hind sight I wore these clothes ALL the time, not just at work. We tell ourselves a lot of little lies to convince ourselves we aren't as vulnerable as we really are. Maybe I'm not as bad ass as I thought I was. I then decided to stop hiding. I'd go out in shorts and a tank top and let my freaky psoriatic flag fly. The people staring wasn't too bothersome. I've been stared at my whole life for one reason or another, but the people stepping away after they stared just pissed me off. Yes most are trying to be polite by not asking uncomfortable questions, but damn it ask me and I'll tell you I'm no threat to you. I'm not contagious. In fact if I am on DMARDs or biologicals you are probably much more dangerous to me with all your germiness and poor hygiene than I will ever be to you. I swung so far to the other side I would often embarrass my oldest because any interaction with people at any public place became a teaching opportunity. I was like the missionary of education for the Psoriatic congregation to the ignorant and needing to be educated public. I'd wear shorts when it was clearly not short weather just to get people to say something. I've never been a halfway girl. If I'm going to jump in it will be like a bull in a china shop decency be damned.<br />
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Today I've mellowed a bit. I still pull my long sleeves over my knuckles, but usually it's because they hurt from even change in temperature in the air. I will however be wearing the shortest shorts my 45 year old ass can carry off in public with my leopard spot scales out for all to see. I wear flip flops and put my feet up where people can't help but see the cracks and scales on my perfectly manicured feet even if those colorful toe nails are missing a nail or two courtesy of psoriasis under the nail bed. I wear my bikini that shows the inverse psoriasis in my belly button and under my breasts. I still get the looks. I just don't feel like I need to explain myself if someone doesn't ask. I will smile and carry on living my life as best as I can spots, cracks, scales and all. I'm not totally impervious to bouts of self consciousness, but I am at least honest with myself that I'm human. That means on days I feel strong enough to look past the stares and comments then by God I will. It also means on days I'm feeling especially self conscious about my appearance that that is ok. I would have those days with out Psoriasis. All of us have insecurity and we learn to live within our perceived weakness.<br />
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I don't know if there is a lesson to be learned from my rambling, but hopefully knowing that even those of us who post pictures of our scales on the internet have times of insecurity, and that's ok, that you are not alone in how you feel about your Psoriasis. We all want to find that miracle drug that will give us remission. We all want to look in the mirror and not see scales and scars. We all have days when looking in the mirror just isn't going to happen. That is OK. Each day is a new opportunity to love ourselves in what ever incarnation we are in on that day. IT WILL BE OK.Anonymoushttp://www.blogger.com/profile/02205771369036279889noreply@blogger.com0tag:blogger.com,1999:blog-4739631650936783231.post-22544448692340551742017-03-15T19:47:00.002-05:002017-03-15T19:47:39.591-05:00Here we go again.... and WHEEEEEEEI'm ready to call it. Otezla is in it's death spin if it hasn't reached total shit can status. I made exactly 1 year. Seriously it was on day 366 I woke up and I swear I heard those pesky ninja ballerina elephants stampeding out of my room and leaving me feeling like fresh road kill. Well road kill undoubtedly feels better because well, it's dead. It's been a nice break from the stampede. Sure there's been days that I had a duo or trio of elephants tap dancing on my joints, but not the whole damn herd. They'd gone on vacation for the most part. Oh well, it's not like the first time or the last I will be at this point of fun at the circus that is Psoriatic Arthritis. My beloved super power/kryptonite wouldn't be doing it's thing if it wasn't keeping me on my toes. <br />
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So as I've officially failed all TNF~Alpha biologicals and DMARDs approved by the FDA at this point it's time to research the newest greatest best thing since sliced bread options. I don't know if I mentioned this in the blog, but I reached toxicity with Lefludemide in October so that was my last DMARD option. I shared it on the Facebook page, but in all honesty it was one of the most miserable not pain related experiences I've had in a long time. You think opioids make you constipated you've never met the med that flushes Lefludimide. ANYWAY If you want to know message me and I'll be happy to share the misery that is that awesomeness of torture. Point being I am out of DMARD options.<br />
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So here are the options, drum roll please......<br />
Cosentyx. FDA approved for both Psoriasis(Jan 2015) and Psoriatic Arthritis(Jan 2016) This is a IL-17 inhibitor. The newest trend in biologicals and the first to target this particular protein. It is also approved for <span style="font-family: inherit;">A<span style="background-color: white; color: #474747;">nkylosing Spondylitis. It is a monthly injection with a loading cycle of 4 doses spread a week apart and then every 4 weeks after that. It seems to have all the typical horror story reading when it comes to potential side effects and death.</span></span><br />
<span style="font-family: inherit;"><span style="background-color: white; color: #474747;"><br /></span></span>
<span style="font-family: inherit;"><span style="background-color: white; color: #474747;">Taltz: FDA approved for Psoriasis (March 2016) in Phase 3 trials for Psoriatic Arthritis with positive indications. This option would require bringing Dermatology into the mix until it is approved for PsA. It is also a IL-17 inhibitor. Loading schedule is a double dose at day 0, then regular dose every 2 weeks through week 12. Then standard dosing of every 4 weeks after that. Again pretty standard potential side effects and maybe death.</span></span><br />
<span style="font-family: inherit;"><span style="background-color: white; color: #474747;"><br /></span></span>
<span style="background-color: white;"><span style="color: #474747; font-family: inherit;">Siliq: FDA approved for Psoriasis (Feb 2017). Another option that would require Dermatology cooperation. Another IL-17 inhibitor. Dosing is injection weekly for first 3 injections and then every other week for normal dosing. This one has a black box warning for </span><span style="color: #474747;">suicidal</span><span style="color: #474747; font-family: inherit;"> ideation and behavior. Beyond that side effects are similar to the others. No current information on FDA trials for PsA.</span></span><br />
<span style="background-color: white;"><span style="color: #474747; font-family: inherit;"><br /></span></span>
<span style="background-color: white;"><span style="color: #474747; font-family: inherit;">There you have the options and a little info on the newest meds in the last year that are not listed on the other medication blog posts. I see the Rheumatologist Friday for our little come to Jesus powwow. She always loves when I get to this point. If anything I have some hope that with it being a totally new inhibitor that is really focused on Psoriatic disease that possibly it will be my miracle. I could use a few or 5 or 10 years on a steady pharmaceutical regime. </span></span><br />
<span style="background-color: white;"><span style="color: #474747; font-family: inherit;"><br /></span></span>
<span style="background-color: white;"><span style="color: #474747;"><span style="font-family: inherit;">One final note. If any of you decide to take Siliq or Otezla both have warnings for mood altering from mild to extreme. Please be aware of your emotional state and health at all times, but especially when taking these meds that have increased potential for issues. I have a signed medical release in my file that if I am acting in a way that is dangerous to myself or others I have 3 </span>designees<span style="font-family: inherit;"> who have authority to commit me for observation and treatment without my consent. I trust these 3 people completely to have my best well being at heart. Fortunately it hasn't been needed, but it </span>relieved<span style="font-family: inherit;"> a stressful concern for me that I had someone who was aware of my behavior if I ever reached a point that I was not aware of myself.</span></span></span><br />
<span style="background-color: white;"><span style="color: #474747;"><span style="font-family: inherit;"><br /></span></span></span>
<span style="background-color: white;"><span style="color: #474747;"><span style="font-family: inherit;">I hope this finds you all in the best condition you can be in. Take care of you! You can't pour from an empty pot.</span></span></span>Anonymoushttp://www.blogger.com/profile/02205771369036279889noreply@blogger.com0tag:blogger.com,1999:blog-4739631650936783231.post-51623880272128368362017-01-20T01:45:00.000-06:002017-01-20T01:45:19.670-06:00The annual Girly Bits appointmentsI posted on the Sausage toes and Scales Facebook page that I am going to take a bit of a new direction with the blog. More of a misadventures in life with Psoriatic disease. So with out any further delay, here we go..<br />
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A week or so ago my friend in TX sent me a Snapchat of her Gynecologist's office bedecked in pictures of the Pope and inspirational sayings that aren't so inspirational while a stranger is probing your uterus. As I chuckled at how uncomfortable it must be for her to have her bits on display in front of the pope like a check of virtue in mid evil times it dawned on me that my time was coming. <br />
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To most people this means remembering to shave the day of their appointment and if they are getting a mammogram remembering to not wear deodorant. For me however this takes planning. Otezla has my Psoriasis in a state of not good, but not as bad as it could be. It is however bad enough that shaving is not a regular activity in my hygiene routine. Last time I shaved my shower resembled the shower scene from "Psycho" with the blood circling the drain and I still didn't have a good shave. So at this point in the story my legs look like I'm growing out the leg hairs to donate to locks of love. I kid you not. I could braid it. When it gets to this point and I have quite a bit of psoriasis coverage I usually opt for Veet. It doesn't seem to irritate my skin, I don't have to get an economy pack of razors, and in 10 minutes my legs are hair free. So I head out to the Walgreens to get the Veet. My appointment isn't for a week, but I don't want to wait to the last minute and find all the Veet is out of stock in Arizona. Guess what! Walgreens was out of stock. Not panicked yet I head across the street to CVS. All they have is the Aloe Vera flower smell version of Veet which makes my eyes water and my skin burn. Now I'm starting to panic a bit. What if they have a nationwide shortage of Veet? What if I can't find it before my appointment a week away?? How will I face my GYN with locks of love length leg hair??? My final stop is Walmart. I hate Walmart. It gives me the creeps, but we're in desperation mode. Walmart has Veet. Hallelujah!! <br />
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Now that the crisis is averted I need a nap. I am too tired to think about what else I need to do to prepare for my probe and squish appointment. I needed a 4 hour nap. Seriously this is why it takes a week to prepare for these things because I have to nap after every step of preparation.<br />
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I get a call the next day to say "oh by the way your appointment for vageen probing is tomorrow.". Um no it's not. It's next week. Oh crap! My brain has failed me again even though the appointment card is on the fridge with the date of TOMORROW highlighted. There is no possible way I can make that so I need to reschedule to the day I originally thought it was which happens to be the day my boob squishing is. Well of course the person who called to remind me can only cancel the current appointment. I must call the person sitting next to them in the office to reschedule. Calling any Dr's office to make or reschedule an appointment is a headache on a good day. Calling any Dr's office at the VA can be like waiting for your number to come up at the DMV the day after every freshman in the county finished drivers ed. So I make the call and go through the prompts and wait. And wait. And wait. 30 minutes later I get a human and it's not the human who can make the appointment, but they will transfer me. Wait, wait, wait, click. Disconnected. After many deep breaths and a walk about the yard I try to call again. Repeat the previous call, wait, and wish process and this time I get the right human who informs me I have a cancelled appointment and they don't know if they can get me in any time this millennia. I resort to begging and miracle of miracles there is an appointment an hour before my boob squish appointment. <br />
<br />
So now we have the correct appointment times, Veet, and it's time for another nap. Yes I nap a lot. My fatigue has been off the charts since November so I feel like most my life is comprised of sleeping and eating.<br />
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Flash forward to Monday. My appointments are on Wednesday so I decide this is the day to tackle the forest on my legs. I get everything ready. Veet, washcloth, the "spatula" that they include with the Veet, a towel and a beverage because this is going to take some time. I prop on the side of the tub and proceed to spread the Veet on my legs from ankles to thighs. Everything is going fine. I'm singing and balancing on the tub. The 7 minutes passes and it's time to scrape the offending hair off my legs. Everything seems to be going smoothly until I get to my thighs. I realize rather too late that in my impromptu karaoke session some of the Veet has gotten onto what we will call the triangle. Not really a huge deal as I know many women who go bald all the time or at least for their annual appointment, but this isn't baldness. It is more like patchy spots that are the nightmare of women having bad dreams of their Gyno appointment. I hurriedly rinse off the remaining Veet and also come to realize that a few spots were more resilient than others on my legs. Most of us have that one spot when we shave we always seem to miss. Mine are behind my left ankle and under my right knee. It doesn't matter how attentive I am in my shaving I always miss those 2 spots. Well apparently the hair under my right knee is Teflon plated diamond infused hair because it was also impervious to the Veet. At this point I've expended all my energy for the day and figure I can just do a quick touch up the morning of my appointment while I'm in the shower. The groin area is just going to have to look patchy because I will not be found naked and passed out in my shower because I tried to fix that area while showering and lost my balance. It's happened before so it is a legitimate concern.<br />
<br />
I'm no longer at locks of love length in leg hair for the most part so I call it good enough. On Wednesday morning I get in the shower and clean up the Teflon knee hair, wash my head hair and get dressed for my appointment. I get to the VA, and wait in the clinic for my appointment. The nurse takes me back, looks at my records and says "you just wait here. Keep your clothes on". Well that seems a weird way to do a pap exam, but the less time in those gowns that leave your ass exposed to the world the better I say. The dr comes in and announces that I don't need an exam as my lack of a sex life and having basically 30 years of normal pap smear results gets me the prize of only needing an exam every 5 years unless I am having problems. I was thrilled, but then it dawned on me the last week my whole focus had been shaving my legs for this appointment. If I wasn't so happy about not having the probe for another 4 years I would have been really pissed I unhaired my legs for nothing.<br />
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At any rate I'm all good. Hairless, but good. <br />
<br />
So next time you ladies are looking at your legs thinking you really need to find the energy to shave the moral of the story is there are a lot worse things in life than hairy legs. Don't sweat the small stuff.Anonymoushttp://www.blogger.com/profile/02205771369036279889noreply@blogger.com0tag:blogger.com,1999:blog-4739631650936783231.post-1117823924395820222016-07-10T20:20:00.001-05:002016-07-10T20:20:03.966-05:00The first chapter of my someday book.... My journey to here.<div class="MsoNormal">
I started a book last year and though it's no where near finished I realized it's been a while since I've shared my "how I got here" story and we have several newcomers since there. SO the best way to share it is to share the first chapter of my someday book. I have been reticent to post it as I'm one of those perfectionist people who don't like to reveal anything until it meets my standard of perfect, but I'm happy with this chapter so without further ado........</div>
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When I was a child I lived in Washington State. The side that everyone thinks is all that
Washington State is. The rainy
side. No it doesn’t rain every day
there, but it rains frequently enough that the lack of the sound of rain is
almost disconcerting for a Washingtonian.
The lack of sound is a void that makes things feel almost too good to be
true. It’s like when you are a child and
someone hands you your favorite candy for no reason what so ever after your mom
has told you not to eat them. You know
it’s probably too good to be true and that something bad will happen, but
you’re going to enjoy every bite like it’s your last meal and worry about the
why, what’s, and how come’s later. Many
people find the constant rain depressing, but I always found it soothing. It was pretty normal even as a moody teenager
for me to lay on my bed with my window open just listening to the rain
fall. In all the places I’ve lived
nowhere seems to have rain that sounds quite like it. England was close, but I was so newly
liberated into adulthood it’s possible I wasn’t listening that closely yet for
small sounds and notes of home. Texas
rain scared me for the first 8 years or so.
It’s not usually a drizzle or a mist.
It is torrential, angry and violent, and often comes with the threat of
tornadoes. Arizona rain is a different
kind of aggression. It seems to push the
desert into every crevice of your world before it comes through with a force
that makes you wonder if you should keep an ark in your back yard. Monsoons are one of nature’s wonders, but
still not the soothing lull of Washington rain.
In Korea the rain was also called a season. It was also called monsoon. It was like the world was going to end. They have water causeways that sit empty and
dirty the rest of the year. These
concrete canals are 8 feet tall and nearly as wide. We called them turtle ditches because every
weekend some soldier who’d enjoyed too much would be found napping there
usually on their back legs in the air like a turtle who was stuck on its’
shell. During the rainy season these
ditches will be full or over flowing.
The streets become rivers. You
finally understand why every building has a tarp on the roof. There is no possible way to totally
weatherproof against this level of downpour.
As soon as you think you are as waterlogged as you can get it
stops. The world smells musty and moldy,
but the rain has finally stopped. In
Washington the beautiful soothing rain really never stops.<o:p></o:p></div>
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I had a fairly normal childhood I suppose. I thought it was tormented and cruel, but the
reality is that most of my friends had divorced parents. They had siblings they had to help take care
of, chores they had to do, longed to be with their non-custodial parent more
(especially when they reached the terrible teens), and had parents that worked
hard to give them whatever little bit they could even if it was second hand
clothes or ramen noodles. My childhood
was not as angsty as I sometimes remember it.
I did seem to constantly cycle through healthy as a horse and having
strep throat, but I never broke a bone, was never hospitalized, had no
traumatic accidents. Pretty much just a
normal American childhood in the 70’s.<o:p></o:p></div>
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None of this is relevant to Psoriatic Arthritis or
Psoriasis, but isn’t every author a bit egotistical and wanting people to know
them. So there you have it. My life as a child was pretty normal. I married pretty much straight after high
school, moved to the UK with my Air Force husband and had 2 children. We divorced shortly after my youngest
daughter was born. As a single mother
with a high school diploma and retail experience I wasn’t making ends meet so I
decided to join the Army to get training that would allow me a career I could
care properly for my children. I loved
the Army, but I desperately missed my children.
However, I had to remember that the sacrifice of being apart from them
was done for them so I pushed forward and was the best soldier I could be. Like most things in life I jumped in with
both feet and didn’t look back.<o:p></o:p></div>
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This brings us about to where my life changed. Not so drastically at first, but
noticeably. I was a good soldier. I was good at my job as a Metrologist. I was pretty darn good at all the required PT
tasks of running, sit-ups and pushups. I
always qualified on my weapon. I’d say
overall I loved the Army and it was a good fit for me. My first permanent duty station was
Korea. This was the late 90’s. After the first Iraq invasion but before
9/11. The Army did however deem that we
needed to have some extra vaccinations.
One of those was the Anthrax vaccine.
To say my body didn’t like the Anthrax vaccine is a gross
understatement. For 3 days after each
shot I’d have severe migraines, vomiting, a bloody nose for hours, and aches
and pains like the worst flu you’ve ever had.
I’d go to the clinic and they’d tell me I’d be fine, give me a bottle of
800mg Ibuprophen and tell me to stay hydrated.
They insisted in no uncertain terms that the Anthrax vaccine was NOT the
problem. The second round of shots the
same thing happened, and again it couldn’t be the vaccine. Another round of 800mg Ibuprophen and advice
to stay hydrated. By the 3<sup>rd</sup>
time they were finally ready to accept there seemed to be a pattern evolving
with me and the Anthrax vaccine and I was told not to take any more shots. By this time, I had started developing
Psoriasis. The Dr said it was likely
genetic, but that the immune response my body had had to the vaccine probably
triggered it to start. Within a few more
months I had severe bursitis in both hips.
There were other aches and pains too, but none was acute enough to be
debilitating or necessarily out of the normal in the life of someone who is
physically active and plays as hard as they work. The hip bursitis however was
debilitating. I couldn’t run and if I
did I would often have the hip sliding and grinding in the joint. I could no longer get into the prone position
or into a foxhole to qualify on my weapon without the hip sliding around and
causing so much inflammation I could barely walk. I don’t know if Psoriatic Arthritis was a
recognized condition at this point, but it was called severe bilateral trochanteric<b> </b>bursitis and was
decided that surgery was not an option so it was time for me to leave the
Army. It took almost 2 more years for
that to happen, but in 2000 I was discharged because of hip bursitis in left
and right. It was deemed to be Service
Connected which for those that are not familiar with the lingo means that the
condition was caused or aggravated by military service. At that time my Psoriasis and Migraines were
also deemed Service Connected. <o:p></o:p></div>
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Once I got out of the Army I was much kinder on my body as
far as physical stress went. I also was
newly married and very happy emotionally so life was in one of those quiet
before the storm periods. My psoriasis
was active, but not aggressive, and as long as I didn’t overdo it or spend too
much time on my feet the bursitis was tolerable most days. I had started my relationship with Tigerbalm,
heating pads and ice packs at this point, and the dr kept me fully stocked with
800mg Ibuprophen which I ate like candy.
I also was supplied with a supply of Vicodin for the really bad
days. Other than this I was told to
stretch as much as I could and not over strain the hip section. Things held at a pretty constant level until
2004. This is when I probably had my
first major flare after the onset flare.
In that year I had been fired from my job, moved, started a new job, was
going through a divorce, and working a job that often had me working 6 days a
week 12 hours a day with a lot of travel.
I also had a very active social life and was not so kind to my body both
in the way I ate, that I drank too much, and I was physically hard on it. I went to see my GP and she stated I just
needed to lose weight and get a normal sleep pattern. I was maybe a size 8 at the time. As to sleep, I don’t think I’d had a normal
sleep pattern in my adult life. 4 hours
of sleep was a good night, and more often than not I was raring to go after a
few hours of sleep. I don’t know if some
part of me knew I had things I needed to get done or if it’s just the way I’m
wired, but I was on go all the time. I
slept with a work cell phone, personal phone, and laptop most nights because I
would doze off researching something for work and wake up to a call for work or
because I had data to process before actually going into work. I decided that the advice to “just lose
weight” probably wasn’t terrible advice.
I am a woman after all and we always seem to think we’re fat, but I also
didn’t think that was the problem. I went
in search of a new GP. The next GP was
an Osteopath. I liked that he was open
to natural and manipulative medicine.
Not just giving me a pill and sending me on my way. I already had all the pills I needed in my
opinion and they weren’t doing it so it was time for a new approach. He didn’t really have any answers for me, but
did refer me to a Dermatologist because my Psoriasis was progressively getting
worse and he’d heard that there were some new therapies being approved by the
FDA. He didn’t feel he was the right
person to prescribe them so off to the Dermatologist I went. </div>
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We discussed the when, why, and how bad my
psoriasis was. He asked me if I was
having any deep joint pain. It seemed
odd that my Dermatologist would be asking about pain, but ok I’ll play. I told him about my hips which had started
having problems about the same time the Psoriasis started, and that I often had
swelling and seizing of my feet and hands especially in the top knuckles. By this time, I was also having a lot of
lower back pain which I had attributed to being in my 30’s and lifting a lot of
heavy equipment at work. He said he
suspected I had Psoriatic Arthritis and referred me to a Rheumatologist, but in
the meantime started me on Methotrexate.
I will go into pharmaceutical treatments in more detail later, but
basically Methotrexate works by suppressing part of your immune system and
hopefully that part is the part that is attacking your body causing Psoriasis
and or Psoriatic Arthritis. There was
about a 6 month wait to see any of the local Rheumatologists as a new patient
so my Dermatologist became my best friend.
Methotrexate helped, but not satisfactorily according to my
Dermatologist and so he added Enbrel. It
was a miracle! I felt amazing. My skin was completely clear of psoriasis in
less than 4 weeks, and I didn’t feel like a tin man in the morning
anymore. I even started running
again. I was a new person! And then the other shoe dropped. During my annual allergy attack I developed
pneumonia. No biggy, I had been warned
that I could get sick easier while on both Methotrexate and Enbrel. Then I got pneumonia again. The Dermatologist dropped the Methotrexate
hoping that the combination was just too much for my immune system. All was wonderful for about 3 months and then
pneumonia struck again. It was decided
that Enbrel was just too much for my immune system. This was the first time I mourned a
medication. It wouldn’t be my last, but
it seemed like a death sentence in my over dramatic head. Fortunately, by this time Remicade had been
approved by the FDA, and I finally had an appointment with a
Rheumatologist. The Rheumatologist took
over my treatment unless I needed topical steroids, but at this point my
psoriasis was under control and hadn’t resurfaced since stopping Enbrel. The decision was made to put me on
Remicade. My Psoriatic Arthritis had
come back with a vengeance. It is not
uncommon when stopping a treatment course that you will have a rebound flare
which seems like your normal Psoriatic Arthritis on steroids, but being this
was my first experience I was pretty sure I was going to die curled in the
fetal position crying. Remicade was
slower to kick in than Enbrel had been.
It’s very easy to be discouraged when at the 3 month mark your pain
isn’t improving, but my Rheumatologist insisted that since my Psoriasis was
under control still the Remicade was doing something and we should wait a bit
longer. Soon after the beginning of the 3<sup>rd</sup> month I started to
notice I wasn’t taking quite so long to get out of bed in the morning. My hands weren’t seizing into a claw several
times a week. My lower back wasn’t
throbbing. Remicade was working! Now I have to mention here that Remicade came
with some extra unwanted gifts that weren’t part of the Enbrel package. For 24-48 hours after my infusion I would be
exhausted. I would have a full body
flare. I would pretty much go straight
home from the dr’s office, crawl to my bed, curl up in a ball and cry myself to
sleep. Then a few days later I’d feel
better and by day 4 or 5 I would feel pretty darn great. It wasn’t as great as Enbrel, but it was
great enough that I was happy with how great it was. <o:p></o:p></div>
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This greatness lasted about 3 years. In my mind the 1-2 days of misery was worth
the 6 weeks of feeling pretty darn great.
I still had the occasional flare which my dr had given me Vicodin and
ibuprophen for, and I had enough jars of tigerbalm around the house that I
probably should have bought stock in the company, but my good days far
outweighed my bad. Then things started
changing. I started noticing that I
wasn’t feeling so great earlier and earlier in the cycle. I was back to living on ibuprophen, and was
needing Vicodin more often. It was
decided to increase the frequency of my Remicade infusions. Gradually it was increased till I was taking
it every 4 weeks which was as close together as was allowed. This helped for about 6 months and then it
was decided to increase the dose. By the
end of year 4 I was at max dose, max frequency.
I was still having more good than bad days, but my bad days were
becoming more frequent. Vicodin wasn’t
helping anymore and I asked to switch for 6 months to Percocet as this had
worked in the past to trick my system into forgetting the Vicodin and then go
back to the lowest dose of Vicodin and it would work again. At this point I’d been on narcotic pain meds
for almost 10 years as needed and this had worked to keep me on the lowest dose
for all that time. I hate taking them so
I only took them when I was desperate, but the nature of the beast is that you
build up a tolerance. This also happened
to be about the time the FDA started cracking down on narcotic pain meds and my
Rheumatologists answer was to up my dose because Percocet was a triple script
and Lortab wasn’t (at this point). She
did not write triple scripts and that was that.
I refused the higher dose and went in search of a new
Rheumatologist. This was also when the
term Dr shopping started popping up in medical conversations in the public
referring to people who would hop from Dr to Dr to get access to pain meds
because they were addicted or using them recreationally. I had already heard the stories of people
being labeled because they had gotten prescriptions from multiple Dr’s even if
they were legitimate such as having a pain condition and then needing a root
canal. I knew I was probably going to
have a very difficult time finding a new Rheumatologist since my main reason
for switching was my current Rheumatologists policy on narcotic
prescriptions. I started interviewing
Rheumatologists. I made it clear I was
not making an appointment for care, but that I wanted to discuss with them
their treatment philosophies before committing to switching practices. 3 Dr’s flat out refused to be interviewed
before. Either I was going to switch to
their practice for care or they didn’t have time to speak with me even if I was
paying for their time. The 4<sup>th</sup>
Rheumatologist on the list was the exception to the rule. I would soon come to realize he was the
exception to the rule in many wonderful ways.
I explained to him what was going on with my current Rheumatologist and
what therapies I had been on and was on currently. I told him how my system had reacted to
changing narcotic pain meds in the past and that so far doing the sneaky switch
and switch back tactic had allowed me to stay on minimum dose with the meds
staying effective for almost a decade. I
explained that narcotics was not my goal, but the reality was that narcotics
had been and probably would be a part of my life for the rest of my life so
staying on the lowest dose possible for as long as possible was a priority for
me. He was frank with me that he was not
well versed in Psoriatic Arthritis, but as it was similar with Rheumatoid
Arthritis he felt that if I was patient and willing to do some research myself
that between the two of us we could successfully manage my disease if it was
possible. He was also open to
alternative therapies which I was thrilled with as I had already been
researching and was finding all kinds of “cures” among the masses. I knew most of them were likely snake oil,
but he was willing to take a look at anything I asked about and give his
professional opinion as to whether it was total crap or if it was worth giving
a shot. He was also good about telling
me that something wasn’t going to hurt me so give it a shot, but inject a bit
of reality by saying that he really didn’t think it would help either.<o:p></o:p></div>
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My first year with him I stayed on Remicade. We tried different pain therapies including
non narcotic medications used for chronic pain conditions, electro therapy,
steroid shots, and massage. We tried
adding physical therapy in the form of yoga, pilates and aqua therapy. Remicade was still losing it’s UMPH. After a year with him it was decided that
Remicade was a failure. I decided I
needed a break from poison so he agreed to give 6 month of holistic and natural
therapies a try as long as I agreed to consider another pharmaceutical option
if it was not helping at the end of 6 months.
I overhauled my diet and cut out most of my processed sugar. I cut out nightshade vegatables, even my
beloved jalapenos. I switched to free
range and organic everything that I could.
I already ate pretty well by this point because I had already realized
my lifestyle was going to continue aggravating my disease so in 2007 I had
switched to a job that was Monday to Friday from 7ish to 4ish with no
travel. I had cut out fast food for the
most part. I ate minimal processed foods
in general, and was either in the pool or on the elliptical machine 4 times a
week and walking the other 3 days. Even
with all these changes over the 2 years before stopping Remicade I had steadily
gained weight. When I started Remicade I
weighed 160. I’m 5 foot 8 inches, but I
have always been muscular so even though on the height weight scale I had been
overweight (as would be indicated by the previously GP who suggested all my
problems were because of my weight), I was a size 8 so not what most people
would consider fat let alone obese. By
the end of my 5 years on Remicade I had ballooned up to 215 pounds, and that
was with all my lifestyle changes that had been in place for the last 2 years
of the treatment. With my 6 month
probation period of going natural I figured I could tweek my life to make it
work. I had to. I didn’t want to be on these biological
medications the rest of my life. I’d
done the research both on Psoriatic Arthritis and Rheumatoid Arthritis so
LOGICALLY I knew I was blowing smoke up my own ass. These are life long degenerative diseases
without a cure. The only things known to
slow them down at this time are DMARDs (<span style="background: white; color: #222222; mso-bidi-font-family: Arial;">Disease-modifying antirheumatic drugs) like
Methotrexate and biologicals like Enbrel and Remicade. I wanted to live in my own little fantasy
land for a while and I was going to make myself better with nature. <o:p></o:p></span></div>
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<span style="background: white; color: #222222; mso-bidi-font-family: Arial;"><br /></span></div>
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<span style="background: white; color: #222222; mso-bidi-font-family: Arial;"><br /></span></div>
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<span style="background: white; color: #222222; mso-bidi-font-family: Arial;">I had my first appointment in this natural period about 2
months after stopping Remicade. I
expected the misery I was in because I had already had the rebound flare with
Enbrel. I asked for a steroid shot and
discussed supplements I’d researched.
The Rheumatologist referred me to a dietician to be sure I was getting
the proper diet, but remarked that I’d lost quite a bit of weight in that 2
months. I was down 20 lbs. I didn’t own a scale and though my pants were
all falling off I had no idea that I had lost so much weight. That first year I lost another 15 lbs and sat
at about 175 for a long time. Needless
to say it was decided that natural just wasn’t going to cut it. After a pretty much full body xray it was
pointed out that almost every joint in my body had developed arthritis that
hadn’t been present at the previous round of xrays that had been done about 2
years previously. I was also starting to
miss more work because of the Psoriatic Arthritis, and my Psoriasis was at the
worst it had ever been. I agreed to try
DMARDs as I had only tried Methotrexate and Cyclosporine at this point. He put me back on Methotrexate as it had been
helpful before. BIG mistake. My body the oh great cantankerous one had
spent the last 5 years building an allergy to it. I went through several months of trying other
DMARDs none of which had much effect if any and my condition was continuing to
decline. I was only working about half
time and it was decided it was time to think about trying Biologicals again. It happened to be just about my 41<sup>st</sup>
birthday. </span></div>
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<span style="background: white; color: #222222; mso-bidi-font-family: Arial;"><br /></span></div>
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<span style="background: white; color: #222222; mso-bidi-font-family: Arial;">I had my annual physical the
week after my birthday as I always did, and this year I was due to have
boosters of several vaccines. So on
September 24<sup>th</sup>, 2012 I left work at lunch and went to my GP’s office
for my physical. Besides my Psoriatic
Disease I was declared healthy for my age, and just before leaving she gave me
the TDAP vaccine booster. Up to this
point in my life I had not had any adverse reactions to vaccines except the
Anthrax vaccine so it didn’t seem like something to be concerned about. Just business as usual in our modern
world. Within a half hour I started
realizing something was not right. It
wasn’t blaringly obvious, but I definitely wasn’t feeling my normal
crappy. I figured it was the minor side
effects that often come with vaccines, the achy, fluish type feeling, with a
low grade fever(not uncommon for me anyway), and headache. I went to bed and figured it would probably
pass while I slept. The next morning I
woke up and felt like every joint in my body had been pummeled with a sledge
hammer while I slept. If I hadn’t had to
pee I wouldn’t have left my bed. I had
to basically slide out of my bed and slowly crawl to the bathroom because
putting weight on my legs was excruciating.
The mildly irritating headache had turned into a full blown migraine,
and I now had a fever of 102. I took
muscle relaxers, narcotic pain meds, and ibuprophen and went back to bed. When things hadn’t improved by lunch I called
the GP and it was decided that I was having a rather severe reaction to the
TDAP vaccine. The flare I was already in
was ramped up to a major flare. I never
went back to work. <o:p></o:p></span></div>
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<span style="background: white; color: #222222; mso-bidi-font-family: Arial;">Between October and January I had hoped one of the
biologicals I hadn’t tried yet would stop the flare and that I could return to
work. Even if work was all I did at
least I could be a contributing member of society. I was put on Lefludimide and started on
Humira. Within the first month I
developed hives and such severe mouth sours that it felt like I was gargling
glass. Then I did Simponi. This caused pustular Psoriasis on my hands
and feet. I couldn’t wear shoes most
days because any pressure on the bottom of my feet was like walking on needles.
I went to Arizona to visit family for Christmas because in the past the climate
there usually helped me a lot. A month
in Arizona did help some, but not enough.
When I returned home I decided it was time to discuss applying for
disability. My Rheumatologist agreed it
was time so I applied. I won’t go into
the minutia of the process, but I was one of the lucky ones who was approved
almost immediately. I received my letter
of approval and my first check in March.
Also during this process since starting Lefludimide I had lost another
20 lbs. This didn’t seem that
significant at the time, but it will come into play later. <o:p></o:p></span></div>
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<span style="background: white; color: #222222; mso-bidi-font-family: Arial;">In May of that year I moved to Arizona to live near family,
and because the climate is so much more stable here most of the year. I am one of the barometrically sensitive
people who can feel a storm coming from a state away. I had to wait 6 months to get into the
Veteran’s Hospital system here and several more months to get into the
Rheumatology department. This left me
only treated with Lefludimide for about another year. Nothing else had been approved anyway so I
didn’t have anything else to try at this point.
During my wait to get an appointment the FDA approved both Cimzia and
Stelara. It was eventually decided that
I would try Cimzia first and if that was unsuccessful I could apply to get the
pharmacy to approve Stelara. By this
time I had been off biologicals for almost 3 years and had maintained a weight
of around 155 for 2 of it. My diet had
been pretty much the same for the last 5 years and if anything my activity
levels had declined a lot. I got my
first loading dose of Cimzia and within 3 days I gained over 15 lbs. My joints were so enflamed with fluid it was
visible through my clothing. Having had
some odd side effects in the past I told my Rheum I’d wait it out and see if it
would settle down over some time as my body adjusted and went on to take the
next dose. This dose brought on another
10 lbs and full body hives. Yet again my
body in it’s wonderful cantankerous chemistry has decided it did not want
anything to do with Cimzia. It was
decided to call it a failure due to allergy and it was time to apply for
Stelara. There was great hope that
Stelara might be just the ticket I needed as it suppressed a different immune
protein from all the other biologicals I had tried to that point. It took about 3 months to get it approved and
I had lost about 15 lbs of the Cimzia weight.
I went into the office, got my shot, and the nausea hit before I even
got home. I had had severe nausea with
other meds so this seemed like a cake walk.
I went home and laid down. I woke
up the next morning pretty unchanged from before the shot except I was
EXTREMELY fatigued. I needed a 2 hour
nap for every hour I was awake. This
lasted for the better part of a month.
Then I started noticing my skin improving, my energy improving, and I
wasn’t as stiff in the morning. I had
that glimmer of hope that happens when a biological is starting to work. I also started slowly gaining weight
again. It wasn’t the rapid increase that
had happened with Cimzia. Just a few
pounds a month that I was able to push aside the first few months as normal
fluctuation. The improvement lasted
about a month and then I started feeling worse again. It was decided to give it a few cycles to see
if my body would improve with a buildup of Stelara in my system. The 2<sup>nd</sup> cycle was pretty much the
same as the first. The 3<sup>rd</sup> I
felt improved. Then the 4<sup>th</sup>
cycle came and I just didn’t seem to be improving after the first month like I
had in the previous 3 cycles. My last
Stelara shot was in June and in August it was declared a failure and I stopped
Lefludimide as well. By June I had
gotten up to 190 lbs. My Rheumatologist
conceded that I seem to have a weight issue related to biologicals. It is now November and nothing has changed in
my life except for stopping biologicals and DMARDs and I am down to 170. I don’t care what the research says some of
us are going to have weight gain with many biologicals. This pretty much brings us to today. My next appointment with my Rheumatologist is
in January and I will need to decide if I will be trying my final option of
Otezla then. <o:p></o:p></span></div>
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<div class="MsoNormal">
<span style="background: white; color: #222222; mso-bidi-font-family: Arial;">So now you know my story.
How I got to the point I am at, why I feel it is my responsibility to be
an educated patient, and why I feel I need to share what I know with others who
are facing the same disease I am. In
future chapters I will discuss FDA approved treatments in the US. What they do, how they are taken and how
frequently, what the potential side effects are. I will discuss diet. With this I will say that I am not someone
who believes that diet can cure you.
Whether you are food sensitive or not it is always advisable to eat a
healthy diet, but there are many dietary things you may want to try to see if
they do improve your symptoms. Again
this is NOT a cure. There is no cure for
Psoriasis or Psoriatic Arthritis at this time.
I will discuss activity/exercise and coping mechanisms. It has been a long journey to this point and
I often felt like my disease was the red headed step child of immune
diseases. Most of you will have
Rheumatologists who are not specialists in Psoriatic Disease so I hope what I
put in this book will help you to be an educated patient who can work with your
specialists to develop the best care plan for you.<o:p></o:p></span></div>
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<span style="background: white; color: #222222; mso-bidi-font-family: Arial;"><br /></span></div>
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<br />
<div class="MsoNormal">
<span style="background: white; color: #222222; mso-bidi-font-family: Arial;">Finally I don’t profess to be a medical specialist of any
kind. My purpose of writing this is to
help point fellow Psoriatics in the direction of information so that they can
begin an educated and informed dialog with their Physicians. Always discuss your care plan and options
with your doctors and specialists. You
will always be your own strongest advocate.<o:p></o:p></span></div>
Anonymoushttp://www.blogger.com/profile/02205771369036279889noreply@blogger.com0tag:blogger.com,1999:blog-4739631650936783231.post-46482672257586104922016-07-08T00:33:00.000-05:002016-07-08T00:33:45.437-05:00When side effects are too much.... Otezla updateI have put off writing this blog for one I wanted to be in my right mind and secondly my hands have been really painful for weeks.<br />
<br />
About a month ago I reached a point that my sanity was more important than my arthritis. Otezla was making some progress on both my skin and my arthritis, but my psychological state was not good. I didn't have the depression many people have as a side effect, I have been there before and this was not it. I had something for me that is much worse. I was in a constant state of angry. My fight or flight response was in constant fight even when it didn't need to be. I was choosing to isolate myself because I was becoming concerned that I would act on my violent thoughts. My family and friends had noticed my change in behavior so it wasn't just me feeling things were worse than they were. I was in a very scary place for me. After discussing this with my Rheumatologist along with other side effect issues like migraines, nausea, stool extremes of either severe constipation of severe diarrhea it was decided to try a different route so to speak. Because it was working on my disease it we didn't want to abandon it completely so I was dropped to 1 dose a day. My psychological side effects lessened noticeably in less than a week, but my Psoriasis and PsA returned with a vengeance as it's known to do when I screw with whatever cocktail I'm on. Lefludimide has been added back into the mix and today was the first day since the change that I have felt my pain levels had improved, and I have noticed this week that my Psoriasis is improving so there is a glimmer of hope that the combo of half strength Otezla with Lefludimide will be a working combo for me without the extreme side effects.<br />
<br />
I have often had adverse reactions to both biologicals and DMARDs. In fact the Rheum said that she got a warning when prescribing the Lefludimide that I have had adverse reactions to similar medications. Even with Remicade which I was on for about 5 years there were side effects, but for me the payment was worth the benefit. The side effect/benefit ratio is something that is very personal for each person. I may be willing to put up with more than someone else because I just don't have many options left to me, but no matter what the whole game is about quality of life. If you aren't achieving a better quality of life what is the point? That being said I feel it is responsible of me to mention that we must be realists in our optimism. I know I will never be what I once was even if I achieve clinical remission. I have too much permanent damage. That is a reality. I can hope for a lower constant level of pain. A level I can function with most the time. A level that I can sleep with. Expecting the impossible is not going to improve your quality of life just like giving up and letting the disease run rampant won't.<br />
<br />
I will keep this brief as even with my hands feeling better they are still pretty stiff and easily agitated. I hope this finds everyone out of flare, and if you are in flare that you find some way to ease your pain.<br />
<br />
~HAnonymoushttp://www.blogger.com/profile/02205771369036279889noreply@blogger.com0tag:blogger.com,1999:blog-4739631650936783231.post-89799655800028226742016-03-12T00:05:00.000-06:002016-03-12T23:29:22.854-06:00New Meds so Now What?!?As those of you who follow the Facebook page know I started Otezla about a month ago. I'm not planning on this blog being about that so much as what to expect when we start a new immune suppression therapy whether it be DMARD or Biological. <br />
<br />
We all have that dream of the magic medicine whether it be pill, shot or infusion, but the reality of advanced immuno medications is that they take time. There really is no secret formula for how or when it will start working. Not just between patients on the same medicine, but each individual patient will have a different time line and complications (and there will likely be a complication or two). <br />
<br />
So what should we/I/you expect or watch for when we start a new medication. We all get the list of terrors when we get the prescription that can strike fear in the most fearless person, We hear the horror stories, which are generally the minority not the majority, but none the less they are generally the loudest voices. Those that are happily going on with their life with positive results and minimal or liveable side effects aren't yelling from the rooftops about their experience after the initial euphoria of significant improvement or remission settles in. It's very easy to step away from the misery that you know is lurking in your body to enjoy the fruits of a working therapy and YOU SHOULD! My point being that don't let the "War and Peace" length booklet on POTENTIAL side effects get into your head too much. Yes you need to be aware of what to watch for, but the majority of those side effects are a very small percentage of the population. And I say this as someone who has a very cantankerous immune system that comes up with side effects not even listed in the documentation. I am also one of the people who has tried nearly every pharmaceutical that has been approved by the FDA and am usually salivating at the news of a new release because I'm back to having failed everything before the newest and greatest next thing is released. I will still tempt the immune system gods, try it and pray for the best.<br />
<br />
I guess the easiest way to approach this is to go through several common questions I hear on various support groups, from fellow patients, and friends who are newer in the process than I am. I will apologize because the only commonality is there is very little commonality to almost every question. That being said there are some ways to hopefully not get too discouraged or anxious while going through the process.<br />
<br />
When will it start working?<br />
The answer to this is there is no answer (I warned you). Whether it is Methotrexate, Enbrel, Remicade, Otezla, Arava or any others in any combination the unfortunate answer is there is no stead fast formula on when you will see results. My experience is that most specialists will want you on any one med for 4-5 MONTHS before declaring it a failure if you are having no response or continuing to decline. Now in that time they may decide to supplement with another medication, increase dose or frequency to try and increase efficiency, but as long as you are not having adverse reactions you're likely on it for the long haul. Now I know this is frustrating, but there is a method to the madness. We are dealing with a major body system. Some of us have been fighting this actively for decades and often for many many years it was lurking not diagnosed or unnoticed as well. These medications are suppressing production of parts of our immune system, but it can take time for a) that suppression to take place and b) the proteins that we have stored in our system to dissipate. It may also take some time to find the right dosage or combo that works best with your individual chemistry. My personal observation and experience has been that if a medication is going to have some impact you will usually start seeing or feeling some <b>minor</b> changes in the first 4-6 weeks. It might not be ground shaking, yell from the rooftops improvements, but you will likely be noticing some changes by then. It can be exciting and frustrating all in the same breath. I happen to be an itchy as well as an achy so for me I normally start noticing changes in my psoriasis first. It may not be significant to anyone else, but <b>I</b> notice it. I blogged about my Humira experience a few years ago and it was around week 2 or 3 I think that I noticed while on my porch having my morning coffee that the rather bad patch of Psoriasis on my big toe had a beautiful pink completely clear of scales spot right in the middle. If I could have danced a jig I would have. It was some glimmer of hope even if it was a minute one by most people's standards. With Otezla in the last 10 days or so(I'm about a month in) I have noticed that my Psoriasis isn't quite as thick as it has been and I'm getting that new skin pink on the edges and under some of the larger scales. I also have NO cracking which is HUGE for me especially since we are on the tail end of winter here (No peanut gallery comments about "winter" in Phoenix). In both cases it is not a guarantee that the medication is going to be enough, but it sure is a sign of life and enough to keep me going without losing complete hope. Other meds have not been so lucky to have that. On Simponi I went the full 5 months with not only no improvement, but I also developed Pustular Psoriasis so in my opinion it made me worse at least in the skin department. So the answer to the question is there really is no answer. There is what seems to be a point where the specialists accept defeat, and there are often small victories along the way before major change is seen, but there is no cookie cutter answer for when it will start working or how that process will take place.<br />
<br />
What side effects can I expect?<br />
Wait for it.... It's a surprise! Yes there are some side effects that seem to be fairly common like with Methotrexate many people experience a level of nausea and some hair loss, but then there are many people who don't. As I said above there is the novel of horrors you receive with each new medication. The majority of these listed side effects are there for legal reasons because there was a small percentage of trial participants who experienced it or if the medication has been around a while a small percentage of patients have developed that side effect. This protects them from being listed in those class action law suit commercials from the ambulance chasers, or at least limits it. If you spend the time and fight the desire to pass out from boredom you can find actual percentages on most side effects. It is often listed in the hand out, but if it's not it is on line in most cases without too much deep research. The reality is if you found 100 people who were the same age with the same disease characteristics and asked them what side effects they experienced with any one medicine you are going to get 100 answers. Yes there is likely to be some overlap, but rarely will you find 2 people who have identical side effects or results let alone time line for either. The other quirky thing is that side effects can be sneaky. Some you may realize quite quickly. On Otezla, Methotrexate, Remicade, and Sulfasalazine I had nausea almost immediately. On Remicade and Sulfasalazine it eventually went away, and after some time I didn't even get it when I got my dose. So far with Otezla it's a near constant with it being much worse in the mornings (no I'm not pregnant). On Methotrexate it improved for the first few years and then suddenly returned with a vengeance. On Humira I had no impactful side effects for the first month or so.At around month two I had full body hives including inside my mouth and it felt like I was gargling glass shards. Cimzia I swelled up like a water ballon and gained almost 20 lbs in the first 2 weeks which was all fluid on my joints. At the month or so mark I had a site reaction and within 24 hours of my shot I had full body hives. So the presence, lack of, or even increase/decrease of any individual side effect is not a guarantee of anything. What it boils down to is be aware of your body. If something is off make a note of it. You are the only one who can decide if it is worth the price for the improvement you are experiencing or the potential for improvement. This is often when self advocating is important. Telling your dr you can't keep your breakfast down often is interpreted as "I have some mild nausea, but lets keep going". If morning nausea and vomiting is where you draw the line stand firm. You may be living with this side effect for a long time. If it is something you can tolerate for a while to see if it improves or the trade off of the positive is worth it than keep an eye on it and keep on keeping on. One example for me of an acceptable side effect was on Remicade I could pretty much guarantee that 24-48 hours after my infusion I would be exhausted. I would drive home from the doctor's office, stop somewhere for a large milkshake because that was about all I could tolerate, get home and crawl into the bed and get in the fetal position where I would stay except to crawl to the bathroom to pee. I was beyond miserable. That being said once that passed I had 4-6 weeks of feeling pretty close to normal. In my opinion giving up 1 day for 28-40 days of nearly normal life was an acceptable sacrifice. I scheduled my infusions for Thursday or Friday so I missed as little work as possible, made sure I had prepared meals for my family so I didn't need to worry about cooking, and my family knew that I was going to be useless for that time. They also knew that after that passed they had their old mom back at least until the next infusion.<br />
<br />
Will I get sick more while on Immune Suppressing therapies?<br />
Another solid answer of maybe. Yes these medications are meant to target certain parts of the immune system, and yes it may make you more susceptible to germs/illness, but then again it may not. Also keep in mind that similar targeting medicines may not have the same effect on your immune response to illness. An example is Enbrel, Humira, Remicade, Simponi, and Cimzia are all TNF-Alpha inhibitor targeting medications. On Enbrel I got pneumonia 3 times in 6 months. On Remicade I would get a sinus infection with allergy season, but I probably would have anyway. It was just pretty much a given the 5 years I was on it that it was going to be a zpack every 6 months or so. On Simponi I had no increase in illness. The others I wasn't on long enough to really say. Now knowing MY experience I can tell you I know people who run the gammit on any medication you want to ask about. Some find they catch every illness in a 1000 mile radius of them, Others could lick the side walk outside a port a potty and be fine(though I wouldn't recommend it). It is another one of those things you need to be aware of what is going on with your body and keep communication open with your specialist. If you are finding a particular medication is too much for your immune system do not discount another medication in the same class for that reason. Yes they target the same components, but if they were all the same we wouldn't have the options we do. Each medication has different components and ingredients to do that job so each one will have a different impact on your immune system. You do need to be practicing extra precautions while on any immune suppression therapy. Avoid sickies as much as possible. Be extra consistent with hand washing especially when being in public places and during illness cycles in your individual community. Let people you are close with know you are immune compromised and that as much as you enjoy their company if they are sick they need to not expose you to it if at all possible. Do not take live vaccines. Flu shots are not a live vaccine, but the nasal inhaler one is. So just be sure to ask before hand to be sure you are not putting yourself at risk. If in doubt call your specialist for confirmation before taking any vaccines. If you have children in the house teach them good hand washing and habits that minimize the spread of germs such as coughing into their elbow, proper food handling practices, and sneezing into a kleenex. Really all common sense things everyone should practice, but being immune suppressed you need to be extra aware of these things for yourself and those around you.<br />
<br />
These are probably the most common questions I see and hear from fellow Psoriatics preparing to start a new immune therapy. The answer to all of them is there really is no answer. That being said you are the expert on your body. You need to be aware of what your body is telling you, self advocate if things are not going well, and be realistic in what to expect when doing your own cost/benefit analysis. Fear the disease not the medication. Though it may be a long road to finding your magic medication or combo no treatment is the only guarantee you have that you will not get better. You may never be what you once were, but improving your quality of life and keeping it longer is the goal. Hopefully some day there will be a cure. In the meantime the best we can do is do try for improvement and maybe remission through medication, lifestyle modification and self care. It may be frustrating and terrifying but you are not alone. Every single one of us who have taken a DMARD or biological has felt exactly how you feel at one time or another or we do now. <br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/02205771369036279889noreply@blogger.com0tag:blogger.com,1999:blog-4739631650936783231.post-7303489598830478452015-11-01T21:09:00.001-06:002015-11-01T21:09:34.508-06:00Life without FacebookIt's been a few days since I deactivated my Facebook account to focus on NANWRIMO this month. I will admit the first day was tough. Especially in first thing in the morning. We get so numb to how connected we are to our digital online presence that until we aren't plugged in we think it's not so bad. I knew I was on a lot. It's my connection to a lot of the outside world. The way to stay in touch with and part of my friends' lives who live all other the country and world. How I communicate with the friends I have developed that are in my favorite PsA support group. How I am notified of events with family, friends and community. It's basically my contact book, calendar, and communication with anyone important in my life. Not to say it's the only way, but it's a main one. I would check it first thing in the morning before I even had coffee/tea in hand. It didn't dawn on me until after I had deactivated it that it was how I kept track of so many events. I've had to message several friends to get reminders of when things were happening so I could put it on my appointment calendar.<br />
<br />
It'a been 5 days now and it is getting much easier. Most the time I don't miss it. Late at night when I would be awake IMing with my other insomniac friends I'm feeling a bit at a loss as to what to do with my time, and since most my games are Facebook attached I don't have those time wasters to occupy my brain when it's not being cooperative for anything else. But when it's all said and done I'm doing pretty well without it. December 1st I'll be back on it though. <br />
<br />
I am not doing so well already with the whole book writing thing. The first day of writing and I've been gallivanting around with a friend. I think I'll work on it some after I post this blog though. It's only 8 at night so I have 4 hours of the day left to get my shit together.<br />
<br />
So off I go to try to get my thoughts in order. Happy Dia De Los Muertes everyone! Say a little hi to those you love who have moved on. Have a great week!!<br />
<br />
~HAnonymoushttp://www.blogger.com/profile/02205771369036279889noreply@blogger.com0tag:blogger.com,1999:blog-4739631650936783231.post-28933186525842510072015-10-26T02:14:00.000-05:002015-10-26T02:14:00.895-05:00I'm BACK!!!!!!!Well I have had a very extended hiatus. Partly because well life. The other obstacle has been my computer. I have a netbook with a condensed keyboard and it was just too much for my wrists and swollen fingers. It was also having some operating issues so now this has been remedied with a full sized keyboard, 17 inch screen (because I'm fairly sure I'm going blind too), and the keyboard is under-lit with LED lights that change to various colors of the rainbow. This last feature has it's negative sides as well because I find myself fixated on it when I'm on my pain meds and nothing is going to get done. I can stare at that thing for HOURS.<br />
<br />
So enough with my excuses. I guess we can do a life update since it's been (ahem) 8 months since I've been blogging. I have been declared a failure on Stelara almost exactly a year after starting. The rebound flare was not as bad as some I've had, but it was no fun. My last shot was in June. I was already in flare and just never came out of it by the time I'd seen my Rheumatologist in August. My skin isn't nearly as bad as it has been in the past, but it is slowly but surely degrading. I've already started getting the winter crack and here in Phoenix it's been in the high 80's (SO not winter weather). My inflammation however is the real problem. Sausage toes and fingers have started to reappear as has the Claw. My Dentist's assistant saw the Claw when I stopped by to make an appointment. I also had my cane with me that day, and he was shocked at the decline since I'd seen him 6 months earlier. I also am having the oh so wonderful wandering mystery pains. You know the ones. They just pop up out of no where and you know you didn't run a 10k or lift dead trees in the last few days so there is no reason to feel like elephants have been river dancing on your body. At any rate my body is back to it's old tricks with a vengeance. It has mellowed a bit this month, but mellowing means it's back to my good ole normal crappy.<br />
<br />
My current management program is lots of rest and pain management, but the Rheum has said she would approve Otezla. I'm a bit hesitant as it's fairly new on the market still, but I have joined an Otezla group on Facebook. It looks like there are quite a few people on there who either were on the trial or got started on it immediately after it got FDA approval so there is some good historical use information there. I will probably lurk and learn till around Thanksgiving and email my Dr my decision so there's time to get whatever pre prescription tests done. It also takes the VA a while to decide to give in and approve the funding for newer drugs.<br />
<br />
I'm not sure what direction the blog will go in for the near future. I get sick of hearing myself whine so I know y'all don't want to hear it. There's very little medication wise happening in the US right now as everything new is in trials. I may do some on diet, distraction, and such, but I know we all get that from everyone who has a cousin's uncle's dog sitter's sister's landscaper that magically healed themselves with blah blah blah. If anyone has requests I'm happy to listen, but can't guarantee I'll follow through.<br />
<br />
One thing I do want to let y'all know is that <a href="http://23andme.com/" target="_blank">23 and Me</a> has had the FDA limitations lifted and they are doing medical DNA coding again. It is very costy, but I'm hoping that they will have a holiday sale because I want to get my parents and kids tested. <br />
<br />
So for now I'll say adios. I hope everyone enjoys their Halloween!!!<br />
<br />
~HAnonymoushttp://www.blogger.com/profile/02205771369036279889noreply@blogger.com0tag:blogger.com,1999:blog-4739631650936783231.post-67512397239947137912015-02-10T14:46:00.000-06:002015-02-10T14:46:30.687-06:00Why granny what large teeth you have.....<div class="MsoNormal">
Once upon a time is the basis of every great story. It leaves the promise of fulfilled fantasy,
the threat of unknown horrors, and the potential for the illusive happy
ending. Most of us were at some point
influenced by these fairy tales masked in a bit of violence and despair. The dream that even when the big bad wolf
eats our dear old granny and uses her as a granny suit ala Wild Bill of Silence
of the Lambs (I wonder if the wolf insisted on granny putting the lotion on her
skin with threats of a hose down), that in the end good and beauty would
prevail and the big bad wolf would be slain for the peace of the world at
large. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Living with an immune disease is sometimes like running from
the big bad wolf every moment of your life.
The only difference is the illusive slaying of the evil beast is truly a
fantasy most of us dream of, but have little realistic hope of ever seeing in
our lifetime. I know many like me follow
the medical news in hopes of that silver bullet that will turn our nightmares
of drooling snapping jowls and yellow eyes called immune disease into the
“normal” person we once were, but without the dreaded result of killing us in
the process.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The commonality of fighting immune disease with fighting
monsters in stories seems very real to me.
Every new treatment holds so much hope of releasing me from the claws of
the monster and freeing me to forever after in blissful normality, but in the
same breath I wonder which bullet will be the one that brings my death or
further infirmity. Which one will cause
a severe allergic reaction (as many have luckily not fatally), which will be
the sea witch’s curse which allows me to walk and dance on land beautiful and
whole only to have it wrenched away when the time has expired without my truly
bestowing the adequate gift of payment to the witch and not only returns my
scales, but plunges me into depths of pain I had happily forgotten
existed. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Currently on Stelara I thank the pharmaceutical white
knights every day for the relief I am having even on days when relief is
illusive and the white knight somewhat resembles Don Quixote jabbing at leering
windmills because I know, or at least I
pray, that the appearance of the dark shadow that is my wolf will again retreat
soon. Yet with every bad day I wonder
and fear if this is the time that the beast has won. The day when my body has finally been overpowered
once again by the aggressor within never to emerge somewhat whole and to outer
appearances unscathed by the darkness that lurks within. When will the day come when I return to the
waiting game for the next valiant hero to attempt to slay my dragons of pain
and disfigurement that lurk in my core through to the coding of my being? The who I am atomically with its flawed and
self-destructive DNA? When will the
dragon really win or is there truly a hope of slaying the beast without being
eaten whole in the process?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
In the core of my being I do not believe I will ever see a
cure for myself, but the true fairy tale for me that holds a glimmer of hope is
that the next generation will find the dragon slayer and that my generation
will be the cattle fed like sacrifices in the process. I am at peace with that as long as my
children and grandchildren and their children have hope of being able to never
live with this torturous existence. I am
a wasted rescue at this point because too much damage has been done, but I am
not a wasted life. I will proudly stand
and stare without fear at the beast and let it slowly consume me if it means my
failures help provide successes for our future.
Now this doesn’t mean I am lying down and waiting for death. I will fight kicking and screaming, likely
causing myself more damage and pain in the process, prolonging death at the
jaws of the monsters as long as I can. I
am not built to surrender. I am built to
fight and claw, make as much noise as I can, cause as much damage to my
aggressors as I can and when I go we will both show the scars of our fight. Accepting I am the sacrifice to progress
doesn’t mean I am a lamb. The best meals
are meals well won so come on wolf, dragon, sea witch, come and have a taste
and may I leave a bitter taste in your mouth because some day my kind will slay
you. It may not be me, but someday my
psoriatic siblings, our offspring and those who fight for and with us will
win. We will have you crumpled at our
feet and you will be relegated to the things of fairy tales. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We will have a happily ever after!<o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/02205771369036279889noreply@blogger.com0tag:blogger.com,1999:blog-4739631650936783231.post-54530161072483516292015-01-31T23:05:00.001-06:002015-01-31T23:05:34.366-06:00Sometimes it's the little things.A while a go I was "normal" people sick. You who have chronic illness/pain know what I mean. Above and beyond YOUR typical yuk you have a virus/infection/one of those nasty bugs that everyone complains about at some point or another. <br />
<br />
I have a picture my daughter took after my last surgery several years ago. I was on the couch resting and she'd brought me my teddy bear Theo. This bear is nearly as old as I am and I won't admit to the exact number, but it's over 40. It has been around the world with me, been with me through 2 births (without drugs), 3 marriages and divorces, every major life moment for most of my 40+ years, and because he's my oldest friend I keep somewhere near by at all times. At any rate she'd brought me my Theo to comfort me and I dozed off with him curled up in my arms and she took a picture. I now put this picture as my Facebook profile picture whenever I'm "normal" sick. Something like hanging a sock on your dorm room door to let your room mate know your "busy", but letting my friends and family know I'm not feeling up to being social and likely passed out like in the picture is my status.<br />
<br />
Tonight I'm feeling a bit stressed out for no apparent reason and decided to take a bath. While in the bath I started thinking about the last time I had this picture posted. Someone who shouldn't have access to my profile had seen this picture and was publicly making fun of me because of this picture and how it's immature and attention seeking. Now I really could giving a flying shit about this person's opinion of me, but for some reason sitting in my bath this came to my head. Not because what this person had to say affected me, but because I wondered at what point do we lose a level of innocence in what soothes us.<br />
<br />
I guess after almost 2 decades of dealing with Psoriatic Disease in it's varying degrees of severity, especially the last 4 of extreme decline, that I've learned to see the beauty in the simplicity of innocence and accepting the beauty of it. When nearly every part of your body hurts and someone rubbing your ear lobes is soothing (and also one of the few places that doesn't hurt) is this infantile because it's how I soothed my child when she was an infant or is it beautiful in it's simplicity that another human can look to find any small way to soothe you when you are in pain? When you miss your children and your arms ache from their absence is a pet or teddy bear childish or the act of filling a loss, even temporarily, with something that is familiar? Or in the case of my picture when my child is looking for a way to soothe me after surgery by giving me something that soothes her. All these innocent simple gestures are things I've learned to see as what they are. Beautiful, tactile, and comforting moments of calm in a world where life is chaotic beyond just the daily grind and typical life stresses. I for one will take those moments anywhere I can find it. Sometimes the most simple, innocent action is the action most needed to find that peaceful calm place above the pain, above the worry, above the anger.<br />
<br />
I guess the point of my rant after my bath is to remind you all that no matter what anyone thinks of your soothing habits don't let anyone jade or tarnish them with their bile and ignorance. In truth people who are so wrapped up in their own opinions are truly miserable in themselves so there's no need to use them as a mirror. Grab your teddy bear(or whatever your totem is) and smile as you let the feeling of calm that the tactile memories of it's soothing you takes over and keep going to your place of peace if even for a few minutes.<br />
<br />
As for Theo he has been put away for a few years. He's safely stored for later emergence once the threat of chewing puppies, attack cats, and children who try to smuggle him away for their own soothing rituals has passed. I will not disclose his location as my daughters occasionally read this lol.<br />
<br />
For now the picture of him cuddled in my arms while I sleep is sometimes enough to bring a smile to my face because during many times of crisis he was my anchor and will always be special to me.<br />
<br />
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<br />Anonymoushttp://www.blogger.com/profile/02205771369036279889noreply@blogger.com0tag:blogger.com,1999:blog-4739631650936783231.post-81311462405553705212015-01-01T00:45:00.001-06:002015-01-01T00:45:31.214-06:00Happy New Year!!!Yes I know I've been absent for more than 2 months, and I apologize. Today was Stelara day and since I'm in bed listening to what I hope are New Year's fire works with the post Stelara flare and headache I figured I'd go ahead and say hi to everyone. <br />
<br />
It's been a roller coaster of a year for both my health and my personal life. Part of my absence has been the end of my 4 year relationship with someone I still care deeply for, but well, stuff happens. I didn't want to come here and use the blog as a personal bitch and moan forum with passive aggressive nastiness so I have kept to myself for the most part. The other part of my absence has been that my laptop is in need of updating (it decided to take a 5 minute thinking break right when I was typing this)and since my patience levels are at about zero I didn't want the aggravation it brings to me. Stelara has made a lot of improvement for me. My skin is nearly totally clear, out of a 6 week cycle I have huge improvement in functionality for about 4 weeks, but I'm pretty sure I'm still getting progressive damage happening especially in my lower back region and my left shoulder. I see my Rheum on the 7th and plan to discuss options with her from going back to the nutritionist to tweek my diet, start PT to attempt to strengthen my core and the muscles around my shoulders and possibly getting some massage therapy, as well as increasing Arava. The Arava is standardly only given at one dose level, but I found a study that they did see improvement in RA patients with an increase so I will be discussing with her if an increase might be worth the risk to try to boost the Stelara impact and longevity of efficiency in each cycle since it really starts waning about week 8 of the 12 week cycle <br />
<br />
So there you have my life for the last months. Not really much to report. I have tried to forward new information on meds and studies to the Sausage Toes and Scales Facebook page, but even that has been pretty neglected. Hopefully I'll feel inspired and get back on here on a regular basis, but in the mean time may you all have a safe and joyous New Year! Here is hoping that 2015 brings us that much closer to a cure for Psoriatic Disease.<br />
<br />
~HeatherAnonymoushttp://www.blogger.com/profile/02205771369036279889noreply@blogger.com0tag:blogger.com,1999:blog-4739631650936783231.post-65416279590456863282014-10-21T21:12:00.002-05:002014-10-21T21:12:58.099-05:00Reality versus FantasyOnce upon a time I found a miracle in a pharmaceutical. It was called Remicade. I thought things were bad when I started it, and in the grand scope of things up to that date they were bad. At any rate I went from needing steroid shots into my hips every 3 months, waking up feeling like a steam roller had run me over in my sleep, random swelling making surprise attacks randomly all over my body to feeling rather normal the majority of a time. That miracle lasted a good 4 years before things started slowly returning.<br />
<br />
Because I started Remicade before the inflammation had done major permanent damage returning to functioning and mostly normal was a realistic expectation of a working biological. <br />
<br />
Today I am learning the reality of biologicals and Psoriatic Arthritis again, but my reality before is a fantasy today. Stelara is doing amazing things for me, but unfortunately damage has been done over the last 3 years or so since Remicade quit working. I have to realize that my normal today is a different normal than it was 5 years ago.<br />
<br />
As I spend quite a bit of time watching tv these days the commercials about various biologicals that are treating Psoiratic disease make it appear that is you take these meds you will enter a magical land where you can run marathons, climb trees, paint your house, and dance all night when you take these miraculous cures to an incurable disease. I understand this is part of the ugly machine that has become our necessary dance with big pharma. They are in it for a profit, and any of you who have looked at your insurance claims know they are making HUGE money off of these treatments. I just feel that someone needs to include a little reality with the pharmacy fantasy.<br />
<br />
I have been very fortunate that I have had a few very good Rheumatologists who have given me the courtesy of being realistic with me, and giving me a little come to Jesus lecture about my sometime unrealistic expectations of my body and my treatments. I just hope other Rheumatologists include the same amount of reality into their counseling on using biologicals. It is however such a fine tuned dance between being realistic, being fatalistic, and being overly expectant and hopeful.<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/02205771369036279889noreply@blogger.com0tag:blogger.com,1999:blog-4739631650936783231.post-43498986120107398742014-08-26T15:08:00.001-05:002014-08-26T15:08:44.715-05:00The lesser of two evils.As many of us are figuring out many of us have to choose the lesser of two evils when deciding on treatment options for Psoriatic Arthritis. It's been a battle of lesser evils for me for the last 10 years since I was finally diagnosed. Even when it comes to long term use of NSAIDs. Does taking ibuprofen for years and hoping doesn't eat our stomach or destroy are liver a lesser evil than having a moderate level of anti inflammatory pain relief? I am currently in the battle yet again. I am finally getting relief with <a href="http://www.stelarainfo.com/" target="_blank">Stelara</a> which was it's own lesser evil battle because of all the unknowns, but now I'm switching from daily use of Lortab (narcotic pain med) to daily use of Zanaflex(muscle relaxer). On<a href="http://www.drugs.com/lortab.html" target="_blank"> Lortab</a> I can function. I've been on some form of Hydrocodone for most of the last 2 decades. It doesn't make me loopy, tired, foggy, or high. It takes the edge off a pain that makes it so I can't concentrate or function. It is a functional medication for me that I use as prescribed. With the new regulations regarding Hydrocodone and that Stelara has improved my inflammation levels that were fueling a majority of my pain the last 2 years my Rheumatologist and I decided that it was time to officially cut back on the narcotics. Most of my pain now is due to classic Psoriatic muscle, tendon and ligament stiffness due to periods of inactivity such as when I am sleeping SO muscle relaxers it is. Now I've been on 4 different muscle relaxers over the years and the only one which helped was <a href="http://www.rxlist.com/skelaxin-drug.htm" target="_blank">Skelaxin</a>. The VA who does my care and prescriptions in their continual circus ways have decided that Skelaxin is not "cost efficient" so even though my Rheum prescribed it the pharmacy has decided I need to try yet another one and <a href="http://www.rxlist.com/zanaflex-drug.htm" target="_blank">Zanaflex</a> is it. I've been on it 3 days and it does work on my muscle spasm and tension, but it also makes me want to sleep. If I sit down without being actively occupied with something like writing in my favorite blog I'm out in less than 5 minutes. SO which evil is worse? Pain and muscle tension or sleeping my life away? I am hoping that in a week or so the effects will lesson because it is genuinely working on the problem. I wake up in the morning and though I never feel rested at least I don't feel like those damn ballerina ninja elephants have been doing swan lake on my body all night. Oh the fun lives we live.<br />
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Also I need to pass on some info which I was told today for those of you in the US. There will be new regulations concerning all medications which contain Hydrocodone. This is significant for any of you who use these medications as prescription writing and filling procedures will change. You will need to discuss this with your prescribing physician to minimize problems and delays in getting your pain medications. It will take about 6 weeks for this to be fully implemented, but it will undoubtedly start causing issues even before it is officially implemented with our favorite pill nazi pharmacies ( you know who I'm talking about). Here's the link on the <a href="http://www.hngn.com/articles/40180/20140825/fda-tightens-hydrocodone-regulations-to-curb-drug-abuse.htm" target="_blank">NEW FDA REGULATIONS</a>. I also posted a link to the FaceBook Sausage Toes and Scales page. Please please please do not wait till the last minute to address your prescribing physician about this. I've done withdrawals. Trust me it's not fun and I wouldn't wish it on anyone. It can also be very dangerous for those of us that have extenuating health issues.<br />
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Peace and healing to all of you...<br />
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~HeatherAnonymoushttp://www.blogger.com/profile/02205771369036279889noreply@blogger.com0tag:blogger.com,1999:blog-4739631650936783231.post-61260850391461820592014-08-15T02:59:00.002-05:002014-08-15T03:05:56.258-05:00Barometrically challenged...<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-pEf619DqdIc/U-29ubv3ZaI/AAAAAAAAIJo/1sqUrVQFxdc/s1600/supercell_storm_sean-heavey.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-pEf619DqdIc/U-29ubv3ZaI/AAAAAAAAIJo/1sqUrVQFxdc/s1600/supercell_storm_sean-heavey.jpg" height="183" width="320" /></a></div>
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Yesterday there was a discussion about weather and Psoriatic Arthritis in one of the PsA groups I am part of. Many of us run into doctors that insist that there is no connection to arthritis, pain and weather, but talking with people with different types of arthritis including immune and osteo arthritis there seems to be something to it. I went to search for reasons why this might happen. I remember stumbling on a Dr Oz episode that he talked about it using a balloon to describe how the pressure changes the equalization in the joints (and many of you know I DESPISE Dr Oz), but now I can't seem to find it. I did however find this <a href="http://www.doctoroz.com/videos/weather-and-wellness" target="_blank">Dr Oz post</a> which talks about the effects of weather on many parts of the body and this is what he had to say about joints<br />
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"<strong style="background-color: white; font-family: Georgia, 'Times New Roman', serif; font-size: 15px; line-height: 24px; margin: 0px;">How air pressure affects your joints</strong><span style="background-color: white; color: #6a6a6a; font-family: Georgia, 'Times New Roman', serif; font-size: 15px; line-height: 24px;"> Our joints actually depend upon the outside air pressure to keep them in place. During storm fronts, when the external pressure drops, it allows the joints to loosen, which can cause pain, especially if you are using them a lot. If you notice that your body tells you wet weather is coming, talk with your doctor about how to be proactive and ease the pain before it can slow you down."</span><br />
<span style="background-color: white; color: #6a6a6a; font-family: Georgia, 'Times New Roman', serif; font-size: 15px; line-height: 24px;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: white; font-size: 15px; line-height: 24px;">I'm not sure how talking to my Dr who thinks weather pain is in my head is going to help, but thanks Dr. Oz.</span></span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: white; font-size: 15px; line-height: 24px;"><br /></span></span>
<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: white; font-size: 15px; line-height: 24px;">Arthritis today has a <a href="http://www.arthritistoday.org/tools-and-resources/tools/weather/" target="_blank">weather index tool</a> to help you determine if it's going to be a bad arthritis day (you know in case your arthritis hasn't already told you so), but they seem to be clueless to the reason for this phenomenon as well.</span></span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: white; font-size: 15px; line-height: 24px;"><br /></span></span>
<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: white; font-size: 15px; line-height: 24px;"><a href="http://www.webmd.com/osteoarthritis/features/arthritis-weather" target="_blank">WebMD</a> the site I love to hate (you all know what I'm talking about because you too have decided you have ebola because of WebMD at some point) says that great aunt Mabel may not be your most accurate meteorologist (even if she is always right) because there is no SCIENTIFIC proof behind the joint/weather connection. And by the way this pisses me off too because I'm no one's great aunt Mabel yet. What about us youngsters?? My 17 year old niece can predict the weather too dammit.</span></span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: white; font-size: 15px; line-height: 24px;"><br /></span></span>
<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: white;"><span style="font-size: 15px; line-height: 24px;">Finally the <a href="http://specialtyclinics.med.sc.edu/joint_pain.asp" target="_blank">University of South Carolina</a> came up with a plausible explanation. The article does begin by insinuating that we human barometers are "eccentric" (could they mean crazy?) they do go on to say </span></span></span><span style="background-color: white; color: #666666; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; line-height: 18.200000762939453px;">"Suppose you have an inflamed joint that is subject to swelling," said Fant. "If the barometric pressure is decreased, then that would allow the inflamed tissue to swell more, simply because there is less atmospheric pressure holding the tissue back. If there are nerves in that tissue, then those nerves would be stimulated by that swelling and that would translate into pain."</span><br />
<span style="background-color: white; color: #666666; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; line-height: 18.200000762939453px;"><br /></span>
<span style="background-color: white;"><span style="font-family: inherit; line-height: 18.200000762939453px;">At the end of the day it sounds like most medical and scientific types think that we are a bit off in believing that we can predict bad weather, but their reason for feeling that way is they simply can't explain it. Many aren't denying that the frequency of occurrence of arthritic patients experiencing increased discomfort due to changes in barometric pressure (usually when it is falling), but since they don't know why it can't be true.</span></span><br />
<span style="font-family: inherit;"><span style="background-color: white;"><span style="line-height: 18.200000762939453px;"><br /></span></span>
<span style="background-color: white;"><span style="line-height: 18.200000762939453px;">I could go on a soap box rant about all the mysteries of the universe that are unexplained yet true, but I will refrain. For now my barometrically challenged joints are going to praise all that is good in the universe because the Valley of the Sun is expecting a dry spell for a few days and I might actually get some relief. Here's to stable weather for a couple days! YEAH! Only a few more weeks of monsoon season and my love of Phoenix will return.</span></span></span><br />
<span style="font-family: inherit;"><span style="background-color: white;"><span style="line-height: 18.200000762939453px;"><br /></span></span>
<span style="background-color: white;"><span style="line-height: 18.200000762939453px;">~Heather</span></span></span>Anonymoushttp://www.blogger.com/profile/02205771369036279889noreply@blogger.com0tag:blogger.com,1999:blog-4739631650936783231.post-21323171919895211672014-08-05T00:51:00.002-05:002014-08-05T00:51:36.301-05:00Medications 2014 edition #1 BIOLOGICALSIn the 2 years since I posted the last medication blog we've had some new options appear on the radar.<br />
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In this post I'm going to focus on the biologicals and newest meds. I see a lot of posts in the Psoriatic support groups about what these meds are and which they should choose. I'll try to explain what each med is and does in layman's terms, but the reality is that you usually don't have a lot of choice in which you will get prescribed. It is always your right to decline a medications, but be ready to be added to the difficult patient category unless you can find a way to justify your decision and even then many Rheumatologists I have run across have a big of an ego (not always a bad thing) and could take your declination as questioning their oh so great judgement and still get you labeled as difficult.<br />
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I am addressing the meds that are approved for Psoriatic Arthritis in the USA by the FDA. If you are in another country there may be other prescribing guidelines for your country, but many of these are approved in multiple countries. Some such as Stelara has been having a harder time getting approval especially in countries that have socialized medicine.<br />
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So Here we go.<br />
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<a href="http://www.enbrel.com/index.jspx" target="_blank">Enbrel</a>:(Entanercept)<br />
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We'll start with an oldie but goodie. Enbrel was approved for Psoriasis and Psoriatic Arthritis in 2004. It was the first biological agent approved for Psoriatic disease. This is the medication that our Psoriatic celebrity golf pro Phil Mickelson has been having success with for some years now.<br />
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Enbrel is called a biological because it is genetically engineered from human protein. This means that a biological substance is used to make the medication. It inhibits TNF-Alpha proteins by binding to them so that they can not bind or activate TNF receptors. This function is a normal action in the immune system, but has been seen to be an overactive response in many autoimmune patients. The over function of the immune system causes inflammation. Because the medication is binding a part of your immune system it can lower your immune response so that you are less able to fight disease and infection. <br />
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Enbrel is given via subcutaneous injection. This means you are going to be shooting a needle into your thigh, arm or belly fat. Many people cringe at this idea, but it sounds a lot worse than it is. Your rheumatologist should schedule with a training session for your first injection so that you can see how it is done and ask any questions you may have about the injection process. My preference has always been belly fat, but that's a personal decision as to which area you choose to target. The loading process for Enbrel is 2 shots a week for the first 12 weeks, and then you will do 1 shot a week. There is some variation of dose based on your response after your Rheumatologist has evaluated you on the medication over several months, but after loading 1 shot a week is the typical dose. You may also need to continue with a DMARD while taking Enbrel.<br />
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While you are on Enbrel you will need to have regular blood work to monitor your inflammation, white blood cell counts and liver function. You will also need to have an annual TB screening including chest x ray.<br />
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<a href="https://www.humira.com/" target="_blank">Humira</a>:(adalimumab)<br />
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Humira is also a subcutaneous injection medication (again with the shooting your own fat). Humira is also made with human protein, and works in a similar way to Enbrel by binding to TNF Alpha proteins. Though several of these medications have the same premise of binding the TNF Alpha there is a difference in the molecular makeup of each other these so that when one doesn't work another may.<br />
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Humira has 1 loading dose of 2 injection pens and then 1 week later you start the normal dosing cycle which is 1 injection pen every 2 weeks. Humira and Enbrel are usually the first strike biological meds most Rheumatologists go to for patients who are not responding adequately to DMARDs and anti inflammatory medications. They have the longest protocol history with Psoriatic Patients(and other immune diseases) so they are medications that Rheumatologists have experience with and know what to expect for most people in terms of progression of improvement and side effects.<br />
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<a href="http://www.remicade.com/" target="_blank">Remicade</a>:(infliximab)<br />
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Remicade is yet another TNF-Alpha inhibitor. This one however is given through an infusion. This means that an IV line will be set up and the medication will be dripped into your system through IV. A typical infusion can take anywhere from 2-4 hours depending on the drip rate your infusion professional sets. Mine generally took about 3 hours. Loading doses are at 0, 2 and 6 weeks. This means day 1 you will get an infusion, 2 weeks later another one, and 4 weeks after that another one. Once the loading dosing is done you will start a cycle of every 8 weeks. This can be increased both in dose size and frequency up to every 4 weeks. Because of this being a more detailed process for both patient and provider it is usually not given as an initial course of treatment until other therapies such as Enbrel and Humira have failed.<br />
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<a href="http://www.simponi.com/" target="_blank">Simponi</a>:(golimumab)<br />
Simponi is again another TNF-Alpha inhibitor. It is a self injectable. It is one of the newer biologicals and was approved in the US in 2009 for Psoriatic Arthritis.After this medication we hit a dry spell on approvals until last year. Simponi is given as a self injectable for PsA. It is also offered as an infusion for RA. <br />
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Simponi dosing is at week 0, 2, 4 and then every 4 weeks thereafter. So first dose, then 2 weeks later another dose, then 2 weeks later another and thereafter every 4 weeks. It's big claim to individuality is that it was the first self injectable biological that could be administered only 1 time a month (less poking your own fat!).<br />
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<a href="http://www.cimzia.com/" target="_blank">Cimzia</a>:(certolizumab pegol)<br />
Cimzia was approved for PsA in September of 2013. It is yet another TNF-Alpha inhibitor (because if all the others don't work we should keep beating that dead horse, sorry personal soap box). Loading doses are 2 syringes at week 0, 2 and 4 (see Simponi loading schedule above) and then will be either 1 syringe every 2 weeks or 2 syringes every 4 weeks. It is also a self stabber.<br />
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<a href="http://www.stelarainfo.com/" target="_blank">Stelara</a>:(ustekinumab)<br />
Finally something a little different! Stelara was approved in the US in September 2013. It is also a biological that inhibits proteins, but inhibits <span style="background-color: white; color: #333333; font-family: 'Trade Gothic W01 Light'; font-size: 13px; line-height: 15px; text-align: justify;"> </span>interleukin 12 (IL-12) and <span style="color: black; font-family: 'Times New Roman'; font-size: small; line-height: normal; text-align: start;">interleukin 23 (IL-23) rather than TNF-Alpha. It is also the first biological only targeted at Psoriatic Disease. It is given by self injection. Loading doses are at week 0 and week 4. After that it is given every 3 months.</span><br />
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<a href="http://www.otezla.com/" target="_blank">Otezla</a>:(apermilast)<br />
Last but not least we have the new comer. Otezla was approved earlier this year in March. It inhibits the protein phosphodiesterase 4, or PDE4.Otezla is an ORAL medication. The loading is done over 5 days gradually increasing the dose to the maintenance dose of 2 30mg pills per day (one am and one pm). I can't seem to find any information on if this medication is actually a biological, but my own opinion is it looks like it will probably be classified as a DMARD rather than a biological. I'm also not finding much information on if like other DMARDs it can be taken in conjunction with biologicals or stacked with another DMARD. Because this medication is so very new I'm having a very hard time finding much more than the advertising propaganda, but I'm sure over the next year a lot more will become available as it is prescribed more frequently.<br />
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So there you have the heavy hitters of our little corner of the psoriatic medicine cabinet. I will try to get to DMARDs again in more detail soon and probably anti inflammatories and steroids in future posts. Below are pics of when I was self injecting Cimzia and my Remicade infusion for anyone who wants to see how that works.<br />
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Happy Monday everyone!<br />
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~Heather<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-t1X-d48m12A/UwutrzjkbwI/AAAAAAAAE6g/_xQoXdS75tU/s1600/1939019_10203507559596011_1381673855_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-t1X-d48m12A/UwutrzjkbwI/AAAAAAAAE6g/_xQoXdS75tU/s1600/1939019_10203507559596011_1381673855_o.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Shooting Cimzia in my belly fat roll</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-OYFuZILcSN8/UDgzFB5LllI/AAAAAAAAASE/w0vaZMsni1A/s1600/infusion.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-OYFuZILcSN8/UDgzFB5LllI/AAAAAAAAASE/w0vaZMsni1A/s1600/infusion.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pushing that Remicade into my blood.</td></tr>
</tbody></table>
<br /><span class="tooltip" style="background: url(http://www.stelarainfo.com/sites/all/themes/stelarainfo/images/tooltip-image1.png) no-repeat transparent; bottom: 415px; color: #666666; display: inline !important; font-family: 'Trade gothic w01 Light'; height: 60px; left: -60px; line-height: 10px; opacity: 0; padding: 10px 10px 0px; pointer-events: none; position: absolute; text-align: left; width: 180px;">Proteins that increase the growth and function of white blood cells, which are found in your immune system.</span><br />
<span class="tooltip" style="background: url(http://www.stelarainfo.com/sites/all/themes/stelarainfo/images/tooltip-image1.png) no-repeat transparent; bottom: 415px; color: #666666; display: block; font-family: 'Trade gothic w01 Light'; height: 60px; left: -60px; line-height: 10px; opacity: 0; padding: 10px 10px 0px; pointer-events: none; position: absolute; text-align: left; width: 180px;">Proteins that increase the growth and function of white blood cells, which are found in your immune system.</span><span style="background-color: white; color: #333333; font-family: 'Trade Gothic W01 Light'; font-size: 13px; line-height: 15px; text-align: justify;"> </span>Anonymoushttp://www.blogger.com/profile/02205771369036279889noreply@blogger.com0tag:blogger.com,1999:blog-4739631650936783231.post-29353388705737180192014-07-31T00:23:00.001-05:002014-07-31T00:23:41.838-05:00Life in the fast lane.... Oh wait a minute. I need to restI am now about 2 months into Stelara (7 weeks, but who's counting). The good stuff is starting to really kick in, but the lack of stamina is hanging on like a big gooey booger. I've been an insomniac most of my adult life, but the last 3 years it's been painsonia so there wasn't much benefit to being awake at 3 am when the rest of the world is enjoying the dreams. Now however I do everything in spurts and with insomnia that works just fine. The other day I used the inability to go to sleep time to organize my jewelry box, and then when I was awake 3 hours later at 5am I took advantage of the early morning coolness to clean my pool. Of course by 8 am I was ready for a nap so 2 more hours of sleep and I'm raring to go for another 3 hour spurt of productivity. I've had this pipe dream of being able to go back to work someday, but I highly doubt I will find an employer that can appreciate my unique schedule. I also wonder if I'm ever in a relationship that I live with someone how they will be able to understand my night time activities. ANYWAY, I'm medicated and getting side tracked. Back to Stelara progress. My skin had a mild plaque flare after the 2nd dose, but not enough that most people who weren't me would notice it. I also had some pustular flares on my hands. One blister in particular is still hanging around. It will come to the surface, but angry and tender, fill full of fluid and then shrink again and become a hard lump. It's in hard lump stage today, but I see fluid beneath the lump so it will be filling back up again soon. The other few spots either ruptured quickly and turned to cheese grater skin or just reabsorbed nearly as quickly as they appeared. My pain is the other big improvement. I have dropped to half dose of my pain meds and don't need them every day on the clock to stay around a 6 in the pain level (I know the stupid pain rating system). To put it in words at 6 I can think, but the pain is most definitely there and a constant nagging, but the nagging I can dull out if I work at it. Once it gets to 7 I'm no longer functional and there is no way to be functional without pain meds. Then even with pain meds it's more of a resting functional because the pain is still there with the inflammation, but it's no longer consuming my world so much that I live in the fetal position. I have noticed that my pain is still very much affected by barometric pressure, and since it's monsoon season here in the valley of the sun there's a lot of barometric changing happening. I moved to Phoenix because it is a much more stable environment barometrically 10 months of the year. I'll have to wait till September gets here and the weather levels out again to really see where I am in the pain realm.<br />
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One thing that is not a good thing is that my brain fog is worse than before. I've had dr's make snide comments about how they don't know how I'm standing straight with the levels of narcotics I'm on let alone that I can talk straight. Now I'm on less narcotics than I've been on in 3 years, but my brain just doesn't function. My family is always either finishing my sentences or doing that thing people do when people stutter that is them willing a word to come out, but trying to not be insensitive about the stuttering. If I had to do a complicated math problem (which happened daily when I worked) to save my life I'd be dead. There is just no way I have the brain stamina or focus to do that these days. I'm not getting lost in my house, but if it gets much worse I'm going to need to leave sticky notes on the walls to remember where the bathroom is. I'm sure I will find a way to adapt, but as many of you who have brainfog know it is a truly frustrating part of the disease and medication side effects.<br />
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I've been working on a few non Stelara blogs because I'm sure you're as tired of hearing about it as I am of talking about it, and next week I'll start publishing them.<br />
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Hope you all can find a safe haven from your pain and find your joy anywhere you can.<br />
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~Heather.<br />
<br />Anonymoushttp://www.blogger.com/profile/02205771369036279889noreply@blogger.com0tag:blogger.com,1999:blog-4739631650936783231.post-82947036760106598142014-07-09T23:49:00.001-05:002014-07-09T23:49:59.756-05:00Stelara the first month<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-jg74yIUv0XI/U74YYHvwEHI/AAAAAAAAHUI/fBFgNZxQ__M/s1600/Quote-About-Hope.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-jg74yIUv0XI/U74YYHvwEHI/AAAAAAAAHUI/fBFgNZxQ__M/s1600/Quote-About-Hope.jpg" height="320" width="320" /></a></div>
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Tomorrow will be my second dose of Stelara. I know I have been severely negligent of the blog, but I've been trying to focus on allowing this drug to be my miracle. The first week was tough, but slowly but surely I started seeing improvements in my skin. My pain was not decreased, but it was changing. Rather than large area pain from inflammation I was having a lot of acute pain in and on the joints which have always been my most affected joints in addition my knees joined the chorus. This past week has been nearly as good as right before I took the TDAP vaccine that sent my already in flare PsA into full blown hell fire and brimstone flare. I have ankles for the first time in 3+ years. I also have a knee cap, not a large fluid filled bump between my shin and thigh. My fingers and toes are noticeably less swollen, but this also means I can see the deformity that has taken place in the last few years especially in my pinky fingers and big toes. It's not enough to be very obvious, but I see it. The bend at the top joint of my pinky that goes against the natural curve of my finger, the one on my middle finger that is at the middle joint going the opposite way of my pinky. That my big toe is so bent in on both feet it will get caught under the next toes when I walk if I am not wearing footwear that keeps them apart or steady in some way. I'm also fairly sure my feet have done some twisting as I've always had VERY flat feet and suddenly I have an arch. None of these things are so bad that they will stop me from being productive in small spurts or finding some way to find joy in some meaningful to me project, but they will be lasting reminders of what lurks in my body even if Stelara is a miraculous success. My energy is improving even though I still don't have much stamina. I need to take a break frequently, but not necessarily an extended nap. My skin is almost completely clear besides a few holdouts that were my worst psoriasis spots. Even those spots like my ankles and toes if you didn't know I had psoriasis you wouldn't know I had it by sight. Visually the skin appears like it is in the healing process with just the off colored scars left in evidence of the war that has been waged on my skin over the last 4 years since Remicade quit working. By touch though you can feel the scaly raised texture in those few spots. At this point even if tomorrow doesn't go well I have a glimpse of what could be so it gives me hope to keep trying.<br />
<br />
<br />
Dose 2 of the last 3 biologicals have been the dose of doom for me. I am very anxious about how things will play out tomorrow. I will be truly heart broken if I have a severe reaction. It has been nice to have a glimpse of my semi functional life even as limited as it had become before my flare went psycho. I've started setting up my craft room, made tentative plans to do things with people in a few weeks once my immune system has recovered enough that a cold won't kill me, enjoyed swimming and doing projects around the house and yard. I've tried to remain positive in hopes that the great power of the universe wouldn't give me so much hope just to take it away, but still I am hesitant to feel joy about this improvement because I've seen it yanked away so many times before. I know the reality of my immune system is that this improvement has a shelf life because my immune system's super power is building super immunity including to meds that make it more normal. In the mean time I will hold my breath and hope for a good outcome tomorrow, and if that happens I will enjoy the next 3 months like they are my last because I know what is waiting for me the day this drug stops working.<br />
<br />
I can't commit to being more frequent at blogging right now, but I do keep pretty regular posts on Facebook. If you haven't gone over and liked the Sausage Toes and Scales Facebook page you may want to. I forward a lot of info I get from other Psoriasis, Psoriatic Arthritis, Immune Disease and Chronic Disease/Pain groups and pages so that is usually where you will see information about new and up and coming treatments and other topics such as coping with this disease and chronic illness and pain in general.<br />
<br />
Here's to dose #2. I pray you all are well and finding your happiness in any way you are able.<br />
<br />
~Heather<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/02205771369036279889noreply@blogger.com0tag:blogger.com,1999:blog-4739631650936783231.post-35171977548732571982014-05-31T15:20:00.000-05:002014-05-31T15:20:15.070-05:00Stelara approved.The pharmacy says I am approved for a trial of Stelara. Not sure what that means, but I'm guessing that they aren't going to give it long to do it's thing before deciding it's a failure. Still waiting on the Dermatology department to "map" my psoriasis and the Rheumatology to teach me once again how to jab a needle in my belly fat. So begins the journey to the last leg of the pharmaceutical trip for a while. Work or not work this is the last option until something else gets approved.<br />
<br />
I also start moving Saturday. I have found a house with a pool. The pool was #1 on my must have list. Swimming is about the only real exercise I can do consistently, and my psoriasis improves so much from the time in the sun and chlorine. Last year my skin nearly cleared up from being in the pool almost daily. Plus being in the water even if I'm not doing enough actual swimming to be considered a cardio work out helps keep my joints more fluid.<br />
<br />
Soooo forward on the march continues.<br />
<br />
Happy June eve!<br />
<br />
~HeatherAnonymoushttp://www.blogger.com/profile/02205771369036279889noreply@blogger.com0tag:blogger.com,1999:blog-4739631650936783231.post-4819978552262602532014-05-26T19:06:00.000-05:002014-05-26T19:06:12.332-05:00Here we go again.. on to Stelara (fingers crossed)So I announced it on Facebook, but I'll let everyone here know as well. The Rheum has put in the request for me to start Stelara. It could be a bit before this actually happens as I will only be the 2nd patient on Stelara at the Phoenix VA, and the 1st for Psoriatic Arthritis. Because of the cost it seems the pharmacy is quite reluctant to authorize it unless all other options have been exhausted. Since I am one of the lucky ones who have gone through EVERYTHING else on the Psoriatic disease menu I get to yell BINGO now right?<br />
<br />
One thing that has been getting in my crawl this week is thinking about my liver. I find that adding ibuprofen, at night especially, helps my inflammation and stiffness in the morning. Now logic would seem to go that with taking so many meds that are so harsh on the liver finding ways to minimize them would be the thing to do. I asked my Rheum to put a recommendation to my GP who acts as my pain management doctor to switch my narcotic from lortab (hydrocodone/acetaminophen) to the same dose of narcotic with ibuprofen in an effort to lower to toll on my liver. She outright refused because she said my liver numbers have been good (I've seen them and they are in the good level, but very close to the high end of good) so she sees no reason to make that recommendation. Now I realize I'm not a doctor or even a heath care professional, but I try to employ common sense and proactive behaviors when it comes to my disease. Knowing that at some point my liver is going to say enough is enough is a reality. Extending the life of that organ when it's health is a determining factor in my receiving many of the treatments to treat my disease would seem proactive to me. SO telling me that because my numbers currently fit in a pretty little box right now is the reason to not be proactive in minimizing the abuse that organ is taking seems to be crazy talk. I know my dr's are overtaxed and their priority is to attempt to fix what problems I have right now (lord knows I have enough things that need immediate attention), but I hope to live in this body for many more years even if it means living with scaly skin and harassing the grandkids and chasing hot young boys from my wheel chair. I can live with Psoriatic Disease, but living without a functioning liver is quite another thing. <br />
<br />
It makes me wonder if maybe as a community we need to start encouraging big picture care with long term in mind with our physicians. The treatments are slowly killing us often faster than the disease. It's like a vicious circle. I know it isn't just psoriatic disease that faces this challenge. Many of the immune diseases have the same treatments. Are we putting off pain, deterioration and ugly skin for a generation of people who need to have will need to have extensive care for liver dysfunction or failure? As many of you know this is the type of circular thinking that keeps me occupied when I'm having insomnia or painsomnia (which is frequently as you know lol). For more information on liver disease and it's causes and treatments here's <a href="http://www.webmd.com/digestive-disorders/digestive-diseases-liver-failure" target="_blank">WebMD's</a> information on liver failure.<br />
<br />
I hope you all are having a peaceful Memorial day for those of you in the US. Being a Army Veteran myself I spend this day pretty isolated and quiet. Bless all of the service members who have lost their lives for our country, the ones who keep living in war even once they've come home, and those of us who will pay for the rest of our lives physically for our time serving our country.Anonymoushttp://www.blogger.com/profile/02205771369036279889noreply@blogger.com0tag:blogger.com,1999:blog-4739631650936783231.post-48629892722236629972014-03-22T13:45:00.001-05:002014-03-22T13:45:47.819-05:006 weeks of Cimzia...On Monday it will be 6 weeks since my first Cimzia shot. I saw the Rheumatologist Thursday and we discussed how things were going. I have gained 15 lbs since starting the shot so that was REALLY concerning for me. My diet really hasn't changed and if anything when I am in TX my activity levels are up so this extreme and sudden weight gain was glaring. What was really weird about it was that my clothes were fitting pretty much the same. Everything felt a little snug, but more in a I want to be a nudist snug than I'm too fat for my clothes snug. I was back to wearing yoga pants and loose dark tops because my jeans were putting pressure on my lower back/SI joint, and my bras were cutting into me so bad I would be raw by the time the day was over. Now they didn't start this way when I put them on, but by the end of the day I was miserable. I knew I was having some inflammation issues, but had no idea how bad it was. The dr stated she visibly could see fluid on my knees, feet and right shoulder and could feel it in my hands, left shoulder and hips. That is a lot of fluid sitting on/in my joints. She is of the opinion that THAT is where all my weight is hiding. She says she has never seem this with any other patients when taking TNF inhibitors, but lucky her I have a wonky chemistry that does fun, exciting and unexpected things. The decision for now is to go on the minimum dose of Cimzia this month and see if the fluid and weight go down. If it does we will continue on with minimum dose for a few months to see if my body will respond positively in relation to my joints on that dose. If it doesn't it's bye bye Cimzia.<br />
<br />
SO besides my oddball side effect of being a water balloon I guess I should talk about the other side effects/results. My skin had improved initially, but it is flaring back up so I'm starting to think that had nothing to do with Cimzia and everything to do with spending every Sunday watching my hot boyfriend play outdoor soccer and soaking up that wonderful natural vitamin D and light therapy. Now that I'm back in PHX and feeling like crap from all this fluid I've been living in the cave I call my apartment and not getting a regular day of sun. Yes I know I live in a city that has the nicest weather in the country and I should take my lazy ass to sit by the pool, but I'm busy having a pity party right now. My nausea has been increased from the norm, but not enough that if Cimzia was working it would be a deterrent to taking it. I've started having migraines again, but that very well could be because of the fluid retention. My fatigue levels have also spiked to new levels of yuk, but again that could be fluid retention related. I guess I have to say that it's still a toss up on Cimzia. IF we can get the fluid issues resolved I'm not so put off by the other side effects to stop taking it IF it works on my joints. As much as the skin part of psoriasis is awful I'd live with that if something worked on my joints. If it's not working on my joints the associated risks of the biologicals are not worth it to me to have pretty skin. My family, boyfriend, and friends aren't put off by my skin beyond that they worry about my comfort levels, and when strangers see it it actually gives me a chance to educate about Psoriasis and Psoriatic Arthritis so I'm not self conscious about it most the time.<br />
<br />
In other news Celgene was approved last week for Psoriatic Arthritis. That makes 3 FDA approvals in the last year!!! I have not done any research on this new med yet, but will be looking at it this week. I will try to do a blog on all 3 new approvals (Stelara, Cimzia, and Celgene) in the next few weeks. I will link the previous med blog to that blog so you have all the info at your oh so wonderful fingertips.<br />
<br />
Hope you all are enjoying a relaxing and wonderful weekend! Blessings and joy to you all!<br />
<br />
~HeatherAnonymoushttp://www.blogger.com/profile/02205771369036279889noreply@blogger.com0tag:blogger.com,1999:blog-4739631650936783231.post-34084678610975326112014-03-12T12:08:00.000-05:002014-03-12T12:08:02.890-05:00Cimzia week 4~ Final loading doseMonday was the end of week 4. My side effects have been about the same and fairly minimal. I waited to write this so I could see if I was going to have any dose side effects after my last shot. Yesterday I was stiff and sore like starting a flare, and today it is continuing to get worse. This could be Cimzia or it could be residual from my trip. My nausea is increased the last 48 hours as it has been with the previous shots. So far no mouth sores after this shot so maybe last time was just a fluke as I do occasionally get random mouth sores for no apparent reason. My inflammation is all over the place. I'll have days where it is much lower than it has been in years, but then I will swell up like a whale. I can't wear a bra because it gets so bad that even my "fat" bra starts cutting off my circulation. Forget about wearing jeans on those days (even my fat jeans) On those days even underwear is uncomfortable. My skin seems to have plateaued so I think the healing that had been happening may have been the natural healing cycle that happens with Psoriasis and not necessarily the Cimzia.<br />
<br />
Overall a month into it I'm not impressed. I'll give it some time since I'm not suffering the terrible side effects and my immune system doesn't seem to be over taxed. I have an appointment on the 20th to see an actual Rheumatologist for the first time since last May so maybe it will have some results. The VA Dermatologist I am assigned to (and LOVE) says the Rheumatologist I am now assigned to is one of the best he's ever worked with so maybe, just maybe, there is some hope. I am going to also approach them about seeing if there is a narcotic pain option with ibuprofen instead of acetaminophen. Ibuprofen actually does help with my swelling and acetaminophen does nothing, but I am concerned that if I use both Lortab and ibuprofen I am going to kill my liver.<br />
<br />
I quit drinking Diet Coke a few days ago so maybe that will also help improve my overall health. It hasn't made a difference in the past when I have quit, but our body chemistry is always changing so we shall see.<br />
<br />
I am thinking about doing some give aways this year of my favorite products for soothing psoriasis and limiting chemical exposure in cleaning/laundry chores. Anyone interested or am I just wasting my time with all you lurking loveys?<br />
<br />
Hope you all have healing and hope every day. Blessings and joy!!<br />
<br />
~HeatherAnonymoushttp://www.blogger.com/profile/02205771369036279889noreply@blogger.com0tag:blogger.com,1999:blog-4739631650936783231.post-64502770874131351622014-02-24T14:47:00.001-06:002014-02-24T14:47:51.959-06:00Cimzia Dose 2...DAY 14Today is dose 2. I took the plunge, and took pics. Those of you that are squeemish will want to avoid the pics. I will be sure to put them all the way at the bottom :)<br />
<br />
So as for progress so far, side effects have been pretty minimal compared to other biologicals and DMARDs I've taken. There is more nausea than usual, but nausea is a pretty normal part of life for me on any of the meds. I had a pretty much nonstop headache for the first week after the first dose, and as the last week has passed the nagging headache has come and gone, but again it's more of an irritant than what I would call bad. I have noticed some neurological issues over the last few weeks, shaking, brain fog, and hot flashes/chilled moments. My honey says I sweat like crazy at night which isn't normal, but I'm not sure if that's me or just because he's hot. I have always had a bit of a problem with keeping my internal temps stable and am prone to either feeling like I'm in a sauna or freezer, but it has seemed much more pronounced over the last few weeks. The shaking is mostly isolated to my hands and not severe, but it makes people who notice it uncomfortable at times. I am also having pretty sporadic fatigue, but since that's a normal part of Psoriatic Life it's also not a huge deterrent.<br />
<br />
Now to how I'm improving. My skin seems to be healing. If you follow the blog or our Facebook page you remember how a few weeks ago my hands were having a severe winter flare with cracking and inflammation from the psoriasis. Any bending of my hands resulted in the skin cracking and bleeding and at the worst of it, just the inflammation of the skin over the knuckles was causing splitting. Here is my right hand (which was the worst) 2 days ago.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-PIIQ5pPinN0/UwurRVk61bI/AAAAAAAAE6E/13-KGDoOShM/s1600/1909022_10203488408357242_689023130_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-PIIQ5pPinN0/UwurRVk61bI/AAAAAAAAE6E/13-KGDoOShM/s1600/1909022_10203488408357242_689023130_o.jpg" height="320" width="240" /></a></div>
<br />
I am also noticing other skin areas starting to clear as well so fingers crossed. My inflammation is down (in my opinion), but that seems to be a bit of a mixed blessing. My overall pain levels are down, but that inflamed tissue is no longer giving cushion to my already damaged joints so those joints (knees, shoulders, hands, feet, hips) are having grinding and pain in a different way. I sound kind of like a broke down terminator going up and down the stairs. Now keep in mind that for the last 4 years stairs were pretty much not an option so that I can actually do stairs is improvement. YEAH! I have had a small amount of Pustular patches trying to pop up, but they get to the bumpy and tender stage and seem to reabsorb into my system. The bottoms of my feet look like I've taken a cheese grater to them, but they don't hurt and have had no eruptions. My palms have also had a few rising pustules, but no eruptions and no skin shedding.<br />
<br />
So for those who want to see the shot pictures here we go. For those that are sensitive to anything needles stop looking now.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-I18gfJlXVrg/Uwutr7i8xdI/AAAAAAAAE6Y/v8woX8_RUig/s1600/1920703_10203507566996196_1141948114_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-I18gfJlXVrg/Uwutr7i8xdI/AAAAAAAAE6Y/v8woX8_RUig/s1600/1920703_10203507566996196_1141948114_o.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The packaging. Each box comes with 2 preloaded syringes. Loading doses are done at week 0, week 2, week 4 and are 2 syringes. After that it is based on your dr's recommendation. Mine is starting with 1 shot/month after the loading cycle is complete.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-t1X-d48m12A/UwutrzjkbwI/AAAAAAAAE6U/o2_0zNpH8R0/s1600/1939019_10203507559596011_1381673855_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-t1X-d48m12A/UwutrzjkbwI/AAAAAAAAE6U/o2_0zNpH8R0/s1600/1939019_10203507559596011_1381673855_o.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Yet that's my belly fat. I think the needle is much bigger than any other previous shots I've had to self administer, but it's been a while since I've dosed anything so it could just be my imagination. I find giving the shots in my stomach is much less uncomfortable than doing it in my thigh, but it's all personal preference.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-lfHH2Zajcqw/UwutsAUO5QI/AAAAAAAAE6c/KspigHjQfSE/s1600/1939332_10203507567396206_1589695603_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-lfHH2Zajcqw/UwutsAUO5QI/AAAAAAAAE6c/KspigHjQfSE/s1600/1939332_10203507567396206_1589695603_o.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Back of packaging. For manufacture questions (if any of you need to speak to someone before starting this) there's the number for you.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-qmWguO-8bKc/Uwutsw79gLI/AAAAAAAAE6s/MAkkORL9qME/s1600/1959150_10203507522235077_2058079799_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-qmWguO-8bKc/Uwutsw79gLI/AAAAAAAAE6s/MAkkORL9qME/s1600/1959150_10203507522235077_2058079799_o.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The actual syringes before shooting it in my fat belly. The white part with the open circle is the cap, black and white plunger end is for "ease of use" along wit the finger grasp black arch.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-dpMfOZ0whmI/UwuttrcLteI/AAAAAAAAE60/xxXS256DUCE/s1600/1969798_10203507534675388_2015635497_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-dpMfOZ0whmI/UwuttrcLteI/AAAAAAAAE60/xxXS256DUCE/s1600/1969798_10203507534675388_2015635497_o.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">So you can see the size. I'd say I have average sized hands (about the length of a dollar bill from wrist to finger tip)</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-Jgr6WAiU0sA/Uwutt8qSJQI/AAAAAAAAE64/Pry_4vI6OfI/s1600/1969816_10203507542715589_1537975644_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-Jgr6WAiU0sA/Uwutt8qSJQI/AAAAAAAAE64/Pry_4vI6OfI/s1600/1969816_10203507542715589_1537975644_o.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bleeding off the air bubble</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-vGWqdkafbKQ/UwutubnaYwI/AAAAAAAAE68/t78l2Mtptjo/s1600/1973130_10203507522795091_82851939_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-vGWqdkafbKQ/UwutubnaYwI/AAAAAAAAE68/t78l2Mtptjo/s1600/1973130_10203507522795091_82851939_o.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Just a close up artsy fartsy pic because I can :)</td></tr>
</tbody></table>
<br />
<br />
So there you have it. I'll be back in a week or so for a week 3 update unless something drastic happens between now and then. Still not a peep from the VA Rheumatology department to see if/how things are progressing. Government run healthcare FTL!<br />
<br />
Blessings and Joy!<br />
<br />
~HeatherAnonymoushttp://www.blogger.com/profile/02205771369036279889noreply@blogger.com0tag:blogger.com,1999:blog-4739631650936783231.post-27357236854142178962014-02-17T17:42:00.001-06:002014-02-17T17:42:22.293-06:00Cimzia Week 1Well so far a whole lot of light side effects and not much benefit. It may be doing some for my skin as the deep cracks that were on my knuckles have started to heal and no new ones have appeared, but that could also be just the normal cycle of flare and heal that is psoriasis. None of my other psoriasis seems to be improving so I'm leaning toward just the normal cycle and nothing to do with Cimzia.<br />
<br />
As for side effects go the only one I am positive is a side effect is the nagging headache I've had since the day after I took the shot. Not migraine, not stress, not even distracting enough to stop life, but none the less nagging and irritating. Everything else could very well be flare related or even Cimzia induced flare. Tendons and ligaments are feeling strained and inflamed. Not the actual joints, but the soft tissue. I can actually see the inflammation on my knees, some of my fingers, and toes. <span style="font-family: inherit;">The </span><span style="background-color: white;"><span style="color: #333333; font-family: inherit;"><span style="line-height: 18px;">Costochondritis is irritated as well and it feels like someone is sitting on my chest and a deep breath is just not going to happen. This goes along with tendon and ligament </span></span><span style="color: #333333;"><span style="line-height: 18px;">inflammation</span></span><span style="color: #333333; font-family: inherit;"><span style="line-height: 18px;">, but is additional irrit</span></span></span><span style="background-color: white;"><span style="color: #333333; font-family: inherit;"><span style="line-height: 18px;">ation. Nausea is worse than normal still. I'm fairly sure my kidneys are joining the fun because I ache in their general area. Not bad enough to raise red flags, but enough again to be </span></span><span style="color: #333333;"><span style="line-height: 18px;">unpleasant</span></span><span style="color: #333333; font-family: inherit;"><span style="line-height: 18px;">. When I get up in the morning my glands in my neck have been swollen and my throat feels raw. As the day goes on the swelling goes down a little and my throat doesn't feel as irritated, but it never really gets back to normal. My fatigue is also much higher especially the last few days. I try to push through it, but this morning it got the best of me. I did the "I'll just lay down for a few minutes" routine and 3 hours later I woke up startled thinking I'd slept through a week.</span></span></span><br />
<span style="background-color: white;"><span style="color: #333333; font-family: inherit;"><span style="line-height: 18px;"><br /></span></span></span>
<span style="background-color: white;"><span style="color: #333333; font-family: inherit;"><span style="line-height: 18px;">All this besides the headache, nausea , swollen glands and sore throat could be attributed to a flare or they could be side effects to Cimzia. It's really hard to tell. Right now nothing is so out of the norm to throw up the big red flags that Humira and Simponi did, but nothing is looking positive yet. I take my next double loading dose of 2 shots next Monday and another one 2 weeks later. IF I make it to that point it is possible that some of these symptoms will mellow once I start on a standard dose of 1 shot per month.</span></span></span><br />
<span style="background-color: white;"><span style="color: #333333; font-family: inherit;"><span style="line-height: 18px;"><br /></span></span></span>
<span style="background-color: white;"><span style="color: #333333; font-family: inherit;"><span style="line-height: 18px;">Of course with me being unassigned at the VA Rheumatology clinic no one has called to check on my progress or difficulties. It's a change from my past Rheumatology doctors. I've always had nurses and or specialists who made sure I was ok. Checking in every few days after first starting my meds and every week or two for a few months after starting. Especially with my history of failure and complications it's concerning that the level of care I have gotten at the Phoenix VA Rheumatology department is the level it is. </span></span></span><br />
<span style="background-color: white;"><span style="color: #333333; font-family: inherit;"><span style="line-height: 18px;"><br /></span></span></span>
<span style="background-color: white;"><span style="color: #333333; font-family: inherit;"><span style="line-height: 18px;">So there you have it. No real news is not good or bad news. It's just another day on the Cimzia ride.</span></span></span>Anonymoushttp://www.blogger.com/profile/02205771369036279889noreply@blogger.com0tag:blogger.com,1999:blog-4739631650936783231.post-65022539607999816722014-02-17T15:42:00.002-06:002014-02-17T15:42:45.469-06:00Cimzia Day 4<div class="MsoNormal">
I have been away from my wifi so it's taking me a bit to get connected. I have been writing as I go so I can give you as accurate responses to Cimzia as possible. We all know my brain is not so good at remembering things anymore lol.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So far no major side effects that would cause me to call the
Rheumatologist to cry. The nausea is
getting a little worse, but that is a pretty constant part of my life due to
Arava already so that it is mildly increased is more of a tedium of irritation
than a reason to stop (not that stopping at this point is an option that would
improve anything immediately). I am
having some neurological issues, but I have that frequently with starting any
new medicine. My nervous system seems to
rebel at the smallest encouragement anymore.
Shakiness, mild increase in brain fog and increased headaches are also
not an unusual part of my life, but definitely increased since starting the
Cimzia. I get these symptoms from a bad
flare as well so calling foul on Cimzia at this point seems pre mature. I have noticed the last 24 hours or so my
need to take narcotic pain meds has lessened.
As I get tired later in the day my pain is increasing, but I don’t feel
enough pain to resort to pain meds till afternoon or early evening and even
then it’s just beginning to build to a distracting level. I tried to go without last night and was
woken up several times in severe pain so today I think I will take my meds as a
preventative measure before bed and see if that stops the rise in cringing,
tear producing pain. My skin continues
to get worse. I was already starting to
have a pustular psoriasis flare on my feet and hands before I took the Cimzia
so at this point it’s probably just the natural progression of that flare. I had little hope of any improvement anywhere
with this drug, but if it helps with my joints and doesn’t worsen my skin I’d
be ok with it. Summer will be here soon
and we will all be complaining about the stifling heat and staggering electric
bills from our AC, but for those of us with skin psoriasis summer is when we
have hope of healing to some degree. For
me it means days in the pool and sun and usually a huge improvement in my
skin. Another 2 months of being asked if
I’ve been street fighting and hitting walls and I’ll be able to get some
healing from good ole mother nature. I
have started making up stories about a fighting club for middle aged housewives
as an explanation for my cracking knuckles when people ask me if I’ve been
beating people up. I’m top ranked in the
fight club of course. It’s my story,
don’t judge. <o:p></o:p></div>
<div class="MsoNormal">
Overall I’ve really got nothing major to report. Side effects minimal, improvement too early
to tell or also known as not a damn thing.
Ok I’ll admit my Lortab intake has decreased which is an improvement,
but it just tells me that my inflammation which last week was out of control
has reduced a lot not putting as much strain on my damaged and mangled
joints. I’m not convinced that there is
any slowing in the damage my body is doing to itself yet. Right now it’s a trade off of pain; less all
over body daggers to the joints for more headaches, skin splitting and
frustration because I can’t hold a fork steady.
10 days to go until I shove 2 more needles in my belly fat. At least it hasn’t been the nightmare of
Humira and Simponi.<o:p></o:p></div>
<br />
<div class="MsoNormal">
As always please remember that all of us have such a unique
chemistry. My experiences with any of
these medications will not be what anyone else will experience. My successes won’t be the same or at the same
levels as anyone else’s experience. I
felt that since Cimzia was newly approved for PsA that giving my perspective as
it happens to me was needed as not many of us have had this option until
recently. Every medication for Psoriasis
and Psoriatic Arthritis (Psoriatic Disease) has the potential for great reward
and great peril. Remember that if your
specialist has decided it’s time to try these powerful medications it is
because the potential reward outweighs the potential risk and the continuing
damage of not being treated. I do not
share my experiences to scare or encourage, but to educate. The mystery of what could happen because of
others announcing the extremes in positives AND negatives is often much more
damning than an opinion that is purposefully dry and to the point. It’s scary enough with out hearing how your
brother’s cousin’s best friend’s girlfriend’s sister almost died because of
such and such drug, or grasping at the hope of that same person who had the
opposite miracle of total healing from it.
The reality is that most will have some where in the middle with a
little disaster and a little triumph. It
all comes down to how much terror we are willing to live with for a little bit
of heaven. I for one will and have tried
everything and anything that I could wrap my head around logically because I am
a person who needs facts.<o:p></o:p></div>
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