Saturday, March 22, 2014

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!


Wednesday, March 12, 2014

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!!