Off Predinose & the continuing journey | Arthritis Information

My dr took me off pred, about a month or so ago. I feel better. The

mad cravings are gone, and weight gain.. tho i'm still a foodie.. but not as bad or as much. I find this to be a very strange illness, just when you think ohhh i'm getting better and walk a bit more, and i'm just talking less then a block!!.. BAM it comes back and hits you.

I still go out just for 4 or 5 hrs, once a wk, that my provider takes me out shopping and i swear I'm EXHAUSTED, in bed for at least 3 days after.. My provider is in her 70's and works 7 days a wk!!! Her choice.. She's in better shape and has much more enegy then I do. She's wonderful.. I walk around in the smaller shops, like walgreens, but when I get to the grocery, I use the wheelchairs and usually I soo am in need of them!!

I guess I haven't been in a major flare for awhile and.. maybe i'm just waiting & wondering when its going to hit again.. yet I still can't walk much and even just hobble around the apt.. so its frustrating, baffling. Happy that I'm not in a major flare, but wondering if and when I can start walking regularly a couple blocks a day or even exercise!! Oh and i'm off the Humira too, I'm going to start taking the new med.. starts w/ an R.. not remicade, but the one where you got just twice a yr, and get fluids, for SEVEN hrs.. I wonder if they'll serve lunch?

so your journeys?? anything like the above?

Hi whispered, I am dreaming of coming off of the pred, I have a couple of good days and then I think, maybe, just maybe I can live without it????

I have tried so many times though that I think I know the answer, however it doesn't stop me from trying again and again. I am currently off of my MTX and Neurontin (nerve pain) and I am doing ok, so now I;m thinking will I possibly be in remission?????? Again probably far fetched but like you I can't walk very far, have a mobility scooter for the shops, everything is too much of an effort and I guess I have just gotten used to it and think of it as normal now! Your provider sounds brilliant she would put me to shame. I think the med you are about to start is Mabthera or Rituxan, I am supposed to be starting that soon too so I wish you the best of luck and hope you are walking pain free very soon, much hugs, Janie.
You are talking about Rituxan and yes, you get lunch. I have just completed my first round of it. It's a process but well worth it when it works.

I have never been on Pred because it has never worked for me at all, which in a way is a blessing because I have not had to deal with all the side effects. But I have done everything else and combo's of them.

It has been two and half years since my dx and still no drug that actually really works...fingers crossed for Rituxan. The first round though can take three to four months to kick in though. I am waiting...

Hi, Whisper,

I am not to the same level as you and Cordy...who is wonderful and great friend.

I do however, get tired, and that stirs the hornets nest...and the joints follow. Right now I am in relatively mild pain. I have taken a short course of steriods for a sinus infection. I can totally relate to the effects.

The fatigue and pain is huge, and understanding what your limits are is even bigger. There are days that I have no clue if I can get out of bed, and there are days(on steriods), where I can relish in the fact that moving is not trying to move the end of the world.

I am very sorry, and I wish I could do more.