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