I haven't posted much about myself for the past few months because there wasn't much to tell.... I was stuck in bed. I didn't want to scare all the newbies! For the newbies: I'm on year 32 since diagnosis. I honestly haven't been in this bad of shape since "The Gap" when I was dx. The fatigue, pain, and worst of all (something I don't usually have): swelling.
My downward slide started around October. Prednisone took care of some of that. Then in November I needed a minor surgery and my blood pressure was dangerously high from the pain, stress, and swelling. Dr said no more prednisone. I changed meds to Stelara after an epic saga attempting to obtain it from the specialty pharmacy. After 2 months I continued to go horribly downhill. My dr. said in the old days he would have sent me to a medical spa in someplace like Hawaii where I could sleep, rest, and be fed for a month. I wish!
The swelling restricted my range of motion on so many joints that moving around AT ALL was almost impossible. My husband had to help me dress and shower and cut up my food into small bites, if I could eat at all from my swollen, painful jaw. I was sleeping 12-13 hours a day (something I've NEVER done before), interrupted by pain.. My kids, age 13 and 16, lived on boring meals they made up themselves, or whatever my husband (who CANNOT cook more than 3 easy things) could make. My husband usually is at work a good 10 hours a day, so being home for dinner and / or taking the kids to their activities several times a week cut drastically into his work time. He also had to take over pet care for my rabbits. Stress: we all had it. About the only thing I *could* do was hold my mouse and type because my hands couldn't close enough to grip anything, even a book. This kept me sane and let me dump on friends and not on my husband / children (they lived it, they didn't need to listen to it too).
I changed to Orencia about a month ago. The first thing my rheumy said to me when he saw me 2 weeks ago was "You look better. I didn't want to say anything but the last few times you were in you looked TERRIBLE". I've been seeing him for 16 years, I'd never heard him say anything like that, so that was quite a statement from him, considering I've not been doing that great the past 2 years. Even the receptionist was excited my next appointment could stretch to 6 weeks instead of 3 weeks!
At any rate, I am now out of bed most of the day about every other day, and half the day the other days. My sleep alternates between a normal 8 hrs, and 12+ hours of sleep. I am able to drive my kids to some of their nearby activities. I can make dinner about twice a week. On a good day when I slept ok and feel pretty well, I can manage one extra outing, such as grocery shopping, or lunch and some book shopping with friends, or clean up the kitchen a bit. The swelling in my joints has gone down about 50%. I still can't close my hands all the way, but 3/4 of the way is progress. I can grip my toothbrush! So things are definitely improving. I still feel a bit like I'm on the outside looking in, with everyone else flying by, but at least I'm able to get re-involved with the things in my life I enjoy, a little bit now. It feels good :)
End note: like I said at the beginning, I don't want any newbies to freak out from my story. After 32 years with PsA this is only the 2nd time things have been this bad for me :))