cellcept question and genl talk
 

Hi all,
I've been reading this thread and am amazed at the number of people who see Dr. Drachman. I do too. After thymectomy (due to thymoma), I'm doing fine with cellcept and mestinon. Recently am trying to cut down on the mestinon.

I'm a little concerned to see that people have relapsed. I've never really felt like asking but are relapses common?? My initial time with MG (dx in Nov 05) was pretty scary (difficulty eating, feeling I was choking, and arms/legs not working) Now I'm doing fine, working full time, enjoying life. Hope I continue to do ok for a long time.

I'm glad to hear that there's additional treatment out there, but hope that everyone will find something that works before having to go for the more drastic treatment. I've been on Cell cept (500 mg 2 tablets/2x per day since 3/06. Does anyone have any thoughts on this? Don't like pills in general but it seems to work for me.

Lisa

I've relapsed. I had a 2.5 year drug dependent remission that ended about 3 years ago. Been really bad ever since. I take Cellcept as well.

cellcept also
 

hi folks...i also take cellcept...2500 mg a day...split am and pm....also take 20 mg of prednisone...down from 60 mg..soon to go to ...20 mg one day 10 the next..and then 12/15 go to 20 mg every other day....i take mestinon as needed..i havnt had any bed effects from prednisone but weight gain...i have noticed small skin growths that the docs have said are benign..i was bad....when mg started in april..couldnt speak well or chew.....VERY hard to breathe and couldnt if i was laying down...im better now execpt for breathing is still difficult..not sure of the prednisone or the cellcept is responsible for improvment...ill see more as i wean off prednisone more......:-)

I also takes Cellcept (500mg x2, am and pm) since 8/21, plus prednisone (started at 10 mg/day, now at 75 ) and 5 x 60 mg Mestinon + 1 delayed 180mg. After 2.5 months , the only improvements are the drooping of one eye-lid and the double vision which disappeared, swallowing and chewing difficulties, plus arm muscle weakness are still present.
I also had two IVIg cures with very little effect.
Besides this, I do not appear to have any significant side-effect (yet?)
If the situation is still the same at the end of the month, my neurologist would like to try plasmapheresis but I'm not very keen for it, if they have to be repeated monthly or so…

notwhatIordered update?
 

Have you gone through the reboot? Let us know.

No, I just recently read about that therapy and I don't know how it is considered here in France. I see my neurologist in 3 weeks and will ask her. But I doubt I would qualify as I have only been affected in May and diagnosed in June and my 3 month therapy seems short to consider my MG as refractory, which appears to me as mandatory for a reboot?

No, not you neutro. The question was for notwhatIordered..