Question- will I ever get my hands back?

May 25, 2010

hello. I wrote a while back, but hadn't written in a bit -- to recap, I was

diagnosed with RA last months, after six months of joint pain and stiffness

and a great deal of fatigue that was ongoing. The I'll just put me on some

medications, one begins with a P. and also prednisone. He wants me to be

taken off the prednisone quickly though, it's causing some awful mood swings

and interfering with my bipolar depression. Plus he's concerned about other

side effects.I'm only supposed to use it for the first two weeks. Today has

been my first day without it and it has been a very painful and difficult

day. The doctor says the other medicine will kick in by the third to fourth

week and it is the beginning of the third week now, but I have sensed no

improvement so far. The pain is very bad. My hands are pretty useless.

I'm typing this with Dragon NaturallySpeaking software -- I highly, highly,

highly recommend that software. It's hard to use at first, but you get used

to it and it becomes easier. This is software that allows you to speak into

a microphone and the words appear on the screen.it's been a godsend.

Anyway, onto my question. It is sad ironic twist, my best friend gave me a

gift of the Xbox 360 and the PlayStation two about six months ago, right

when all this was beginning to start. I spend about $400 on games of all

kinds for PlayStation and Xbox. It was my big birthday spending spree and I

was saving up for months and months. I must have about 40 games and have

been dying to play them.most of them are used games I've wanted for years.

I guess my question is -- will ever be able to play them? Especially if I'm

not taking the prednisone? Will this pain ever go away? Or should I resign

myself to putting the games on eBay? Is there any chance I might be able to

play them at some point in the future or is it just something I have to deal

with not being able to do? That would break my heart -- it's so damn

ironic.

Anyway, I guess no one can say for sure -- I just don't know enough about

this disease and its progression to know whether or not it goes into periods

where you can do things with your hands. What has everyone's experience

been? Am I going to be at this level of dysfunction for the rest of my

life, or is it going to get better?

Thanks

..

sarah

May 25, 2010

, I think a lot of what we call " RA " is likely several diseases under one

umbrella, so it's probably hard to predict who will respond to what drug with

any kind of certainty. It adds up to a lot of trial and error with medication

types and medication doses. People with atypical or mixed disease probably

won't show the kind of improvements that others might have to a given drug. I

had a near miraculous response to Enbrel, but I have very " pure " RA. I'm ANA

negative, no Sjogren's, no weird labs suggestive of other rheumatic or

connective tissue diseases. My family history is positive for very clear RA.

My paternal grandmother had RA as do two of my cousins. We have lots of

autoimmune stuff like Hashi's, MS, lupus, pernicious anemia, etc etc in the gene

pool, but there's probably something specific about my type of RA that responds

quickly and vigorously to Enbrel. That said, there are plenty other biologics

out there beside Enbrel and it's

important to keep working with your doctor until you find a med plan that

minimizes your symptoms. I still get sore feet and hands from time to time, but

my rheum said she'd never know I had RA given my presentation. Enbrel even

makes my labs normal now (well, not antiCCP, I suppose, there's no turning that

one back). So keep up hope, try to do good self care like water exercise,

massage, yoga, whatever helps maintain strength and flexibility. Consult with

different rheums until you find one that can be a good copilot to you as your

manage this disease. I saw 3 rheum groups when I realized I was up against

something big. It wasn't until I hit the third that I knew I had a keeper.

We've moved since then and I call rheum groups ahead of time and make sure there

is a pro-biologic doc in town who will keep prescribing what keeps me mobile.

It's a hassle, but my goal is to keep RA in the background of my life and keep

the rest of my life in the

foreground. And be patient with yourself. Flaring is no fun, and it's natural

to get down and feel awful. But don't give up hope for good management. And to

answer my question, I think you should demand your doc get you back to the

PlayStation

Hugs, Kate F

________________________________

From: Terzo <sarah5775@...>

Sent: Tue, May 25, 2010 6:28:14 PM

Subject: [ ] Question- will I ever get my hands back?