Reality versus Fantasy

Once 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.

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.

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.

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.

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.

The 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 Stelara 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 Lortab 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 Skelaxin.  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 Zanaflex 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.

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 NEW FDA REGULATIONS.  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.

Peace and healing to all of you...

~Heather

Barometrically challenged...

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 Dr Oz post which talks about the effects of weather on many parts of the body and this is what he had to say about joints

 "How air pressure affects your joints 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."

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.

Arthritis today has a weather index tool 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.

WebMD 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.

Finally the University of South Carolina 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 "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."

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.

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.

~Heather

Medications 2014 edition #1 BIOLOGICALS

In the 2 years since I posted the last medication blog we've had some new options appear on the radar.

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.

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.

So Here we go.

Enbrel:(Entanercept)

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.

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.

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.

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.

Humira:(adalimumab)

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.

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.

Remicade:(infliximab)

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.

Simponi:(golimumab)
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.

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!).

Cimzia:(certolizumab pegol)
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.

Stelara:(ustekinumab)
Finally something a little different!  Stelara was approved in the US in September 2013.  It is also a biological that inhibits proteins, but inhibits  interleukin 12 (IL-12) and 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.

Otezla:(apermilast)
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.

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.

Happy Monday everyone!

~Heather

Shooting Cimzia in my belly fat roll

Pushing that Remicade into my blood.

Proteins that increase the growth and function of white blood cells, which are found in your immune system.
Proteins that increase the growth and function of white blood cells, which are found in your immune system. 

Life in the fast lane.... Oh wait a minute. I need to rest

I 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.

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.

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.

Hope you all can find a safe haven from your pain and find your joy anywhere you can.

~Heather.

Stelara the first month

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.


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.

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.

Here's to dose #2.  I pray you all are well and finding your happiness in any way you are able.

~Heather

Stelara 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.

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.

Soooo forward on the march continues.

Happy June eve!

~Heather

Here 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?

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.

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 WebMD's information on liver failure.

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.

6 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.

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.

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.

Hope you all are enjoying a relaxing and wonderful weekend!  Blessings and joy to you all!

~Heather

Cimzia week 4~ Final loading dose

Monday 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.

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.

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.

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?

Hope you all have healing and hope every day.  Blessings and joy!!

~Heather

Cimzia Dose 2...DAY 14

Today 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 :)

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.

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.

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.

So for those who want to see the shot pictures here we go.  For those that are sensitive to anything needles stop looking now.

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.

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.

Back of packaging.  For manufacture questions (if any of you need to speak to someone before starting this) there's the number for you.

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.

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)

Bleeding off the air bubble

Just a close up artsy fartsy pic because I can :)

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!

Blessings and Joy!

~Heather

Cimzia Week 1

Well 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.

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. The 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 inflammation, but is additional irritation.  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 unpleasant.  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.

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.

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.  

So there you have it.  No real news is not good or bad news.  It's just another day on the Cimzia ride.

Cimzia Day 4

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.

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.

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.

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.

Cimzia day ONE

I'm now 24 hours into starting Cimzia. It was approved for PsA last September. The Nurse Practitioner who is my assigned provider at the Rheumatology clinic at the VA decided it was the only option, but my Dermatologist doesn't feel there's a high likelihood of success with my failures on Remicade, Humira, Enbrel, and Simponi due to Cimzia using the same basis for combating my hyper active immune system. 

So far no major side effects. Some nausea, mild headaches and minor all over joint irritation. I noticed I had some skin irritation on my forehead and temples this evening,  but that could be my monthly cycle even though it's not my typical pms pimple attack location.  So far in comparison to side effects from the other biologicals I've been on I'd say it's a 2 of 10. IF I have joint and skin or even just joint improvement without more side effects developing or worsening I'd say it's totally worth the minor irritation.

One thing to mention is that the script I got is the prefilled syringes. The needle guage is larger than others I've experienced. This means it is harder to puncture the skin and left me with more bruising than I usually experience. Again not a deal breaker, but something to be aware of. 

Overall so far so good. I'll keep you all updated!!

In other news I'm freezing my ass off in TX. My winter psoriasis flare is NOT happy with me.

Prayers and blessings!

Heather

Swamp butt and other horrors of inverse psoriasis

Inverse Psoriasis is one of my forms of Psoriasis that doesn't seem to respond to any of my treatments.  It is both uncomfortable and embarrassing.  It tends to dwell in areas that hold moisture and have sensitive skin like the belly button, groin, butt crack, armpits, behind the knees, under the breasts, and anywhere that you might have folds of skin.  Keeping these areas dry, if possible, helps comfort levels a lot, but nothing seems to really improve it or make it comfortable for me.

When my inverse psoriasis is at it's worst it will crack and bleed.  I am always paranoid I will get an infection because these are places that never really seem to fully dry out and are a prime growing area for the evils of fungus and germs.  I have tried any number of treatments from topical steriods, powders, glycerin and witch hazel, tar soaps, air drying after bathing, naked days, and pads that hold moisture away from the skin.  Unfortunately nothing seems to work for me.  I am beyond frustrated.

I bring this up today because as is usual I am having the normal winter psoriasis flare, but my inverse seems much worse than it has been in the past.  My innie belly button is red and angry and has an inverse patch surrounding it so it's uncomfortable to wear any pants that come within 3 inches of it.  My butt crack has actually got a crack and hurts.  Though I am loving the beautiful weather we are having here in Arizona my back sweat seems to go straight to that crack and burns.  My groin has a red halo that goes half way down my thighs and is embarrassing.  I am self conscious about even my partner seeing it.  My armpits itch, and there is no happy place when it comes to shaving or being hairy.  Even behind my knees are affected and burn.  I also have it inside my ears and with the addition of being a wet wax person I feel like I'm going deaf and need to scrape my eardrums out.

I am supposed to start Cimzia next week so I'm really hoping it will help with this curse.  I also hope to buy a house with a pool this summer so naked sunbathing can be a reality which might help.  My neighbors may hate me, but they shouldn't be peeping over my fence.

For those of you who don't know what Inverse looks like here are a few pictures of mine...

Inverse behind knee.  This was taken last year so not as bad as it currently is, but a picture I already had on file.

Inverse in my groin area.  It also is a picture from last year.  The bottom of the picture is the inner thigh near my groin.

For those of you that suffer with this I truly feel your pain and hope you can find something that brings you relief.

Some suggestions I have been given and tried in the past are:
Medicated powder like gold bond
A combination of witch hazel and glycerine both of which are available at most pharmacies (Walgreens or CVS in the US)
Tar soap, many varieties available at pharmacies or on Amazon.com
Wearing breathable and loose clothing to minimize rubbing and production of sweat

Hopefully one of these things may give you some level of relief.