The only thing I could add is that my CellCept did not start to reduce symptoms for about a year. I have now been on CellCept for 13 months (2500mg per day), and I am at 95% of baseline. It works for me. I am still on 15mg Prednisone daily tapering from 40mg per day a year ago.

Prednisone has many side effects of its own, some that are short term. Maybe you are feeling better when they are gone.

Normally your adrenal glands won't start to work again until you are at about 15mg per day or less and mostly you notice them by feeling sore and achy when they don't work and you drop prednisone quite low or too fast at low levels. At high levels of 50/0 probably they are snoozing.

When I got to 30/0 tapering, my neuro suggested I try a week or two of 30/0/0 (every 3rd day dose) and that seemed to work good for me as I eventually got to every 4th day and every 5th day (still at 30). She thought that might wake up the adrenal glands -- having several days between doses. Of course, this was very gradual, maybe a month between step changes and watching for signs of MG returning.

Good Luck
Russ

This is good information. Tediii what do you mean by 95% of baseline? How do we tell when Cellcept is working? In my case my symptoms are getting better while I taper prednisone, but is that because of the Cellcept or am I going into some sort of remission? Of course, that is hard to figure out while taking the cellcept.

I am hoping I continue to tolerate the taper without too many side effects or more importantly return of symptoms. I am going to be loyal to the taper schedule even though I want to get off prednisone bad. It may of saved my quality of life, but it raising havoc with my type II diabetes and I won't be able to get my second total hip replacement while on high levels of prednisone.

Russ, I have it on my list to talk to my neuro about going to every third or fourth day as the taper gets lower. The positive thing is that he usually brings up these ideas before I get a chance to ask...

Some prednisone tapering symptoms can include:
joint pain
muscle pain
fatigue
headache
fever
low blood pressure
nausea and vomiting

So normally the tapering of prednisone is done gradually over months to minimize the possible side effects themselves. At the same time, most of MG folks are attempting to taper slowly enough so they can tell if MG symptoms return, and that is a delayed process too that can be weeks to see the result of a change.

So, the best advice is to proceed slowly as the doctor will insist you do.

While I was tapering, I was already in full MG remission ( I didn't recognize it, although one hint was that mestinon did nothing for me at all anymore-- but make me twitchy) so I could have tapered very fast without MG coming back, but likely would have suffered from the prednisone withdrawal problems and adrenal insufficency (or crash).

Good Luck

Rhanson, I am hoping I am going into remission also. I had my mestinon prescription refilled last week, and my neuro decreased my dose from 60 mg to 30 mg as needed. I don't feel a difference with the change, and I can't really say I always need it but I have convinced myself it gives me more strength.

I tapered my prednisone to 40 mg eod today from 50 eod, and I am hoping this goes well. It sounds like I am starting to approach the level where if I am going to have problems, I will. I still feel better on the non-prednisone days, so I am just praying I can get to zero without symptoms returning and not having adrenal problems.