[Stellatum]

I'm just checking in, and sharing my experience. I had a great summer, but started having symptoms again in mid-August. My neuro and I decided to try me on a low dose of Prednisone (10 to 20 mg.) with a view to treating flare-ups (not as a constant, on-going treatment). Because that's how my disease seems to come: periods of strength followed by flares.

This is day two for me. I'm not bothered by side-effects, but I'm also not stronger. In fact, I'm weaker. I know it's possible that even on such a low dose, I'll get worse before I get better, so I'm not quitting yet.

If this low dose doesn't help, or only helps a little bit, I can consider a higher dose, but that's a whole other decision that I'm not making yet. These flare-ups make me tired, and I have trouble walking, and weakness in my arms, but I am still not having troubles with my vision or breathing.

Abby

[Ron B.]

My neurologist has me on a steady 10mg every other day of prednisone. Then when I have flare ups he will try to have me do 10mg every day. Again it seeme to help after a bit of time but with my diabetes I have to be carefull as well. The steroid drives my sugar up so I need to be sure to make adjustments. I have also recently started Celcept in hopes to eliminate the steroids.We just have to keep on keeping on....

[davew41]

I was on 30 a day then 40 then 50 then finally 60 I was able to swallow better and able to eat and get my weight back to where i was before lambert eaton set in..

Then out of the blue done, it just stopped working, I was and still do actually get weaker from it as it is a common effect and side effect of the wonderful prednisone.

I am now "tapering off" of it I take 30 every other day for a week then I will do a week of 25 every other day etc etc lowering 5 per week.


They want me to start cellcept i have it here tonight (the liquid) and after reading all the stuff about it i am not sure i will take it at all..

I also get IVIG 2 times a week every other week ang get maybe 1/2 of a day where i can walk up the steps without ripping myself up by the banister..

the only other options i am left with are cellcept or Rituxan NEITHER ARE OF ANY GOOD..
I just want to be able to walk again eat right again and breathe properly again..... seems like to much to ask..