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.

Happy Holidays and a Blessed New Year!

As we approach the end of this year I am taking some time to reflect on all that has changed for me.  I've been "retired" for good, I've moved, I've made huge changes in my life.  Psoriatic Arthritis has dealt me some major challenges not the least being the pain that it brings.  It has also shown me some incredible blessings.  I have learned to slow down and smell the roses so to speak, and I truly doubt I would have taken time to see so much beauty in the world if I hadn't been forced to slow down.

I will be going off line for the next few weeks to spend time with my family and friends.  So for this my final blog of 2013 I wish for all of you to find relief from pain and itchiness.  I wish you all to find joy and peace even in your darkest moments.  I hope for all of us to realize a relief whether it be through new medications, improved lifestyle, and or managing our stress better.  I hope that all of us know we are not alone in our journey through this illness.  Be kind to each other and to yourselves and live the best life you can.

Have a wonderful Christmas and a blessed New Year!!!

~Heather

P.S. Here is my late night attempt at keeping steroid goop from getting all over everything.  Knee highs cut into fingerless "gloves".