Myasthenia Gravis Support Group

New here, I,ve been a myasthenic since I was 35 I am now 51, I have had a thymectomy at 35, started Imuran, stopped because of kidney problems, then we started High level prednisone, then to cyclosporin, till creatine levels went wrong, then on to cellcept,now after years, it doesn,t appear to be working, I had one IVIG and ended up with septic menigitus. Though I felt stronger and had better vision after I recupped. After all effects of IVIG woore off things started down hill again, more swallowing proplems double vision, weakness. I finally convinced him to try again. On Mar.1-2 I went for 2 days of IVIG, did feel stronger but was hard to tell as I seem to have gotten every bug going. Does anyone survive on prednisone and ivig.

MG Warrior

It sounds like you have been through a lot. I didn't read if you are on Mestinon or not that would help along with the medications you aready take. I take a high dose of Mestinon and after three years of t

treatment I am some better, keep trying .

MGHouston

Yes I take mestinon as well every 3-4 hours. Think I'm getting all the side effects of cellcept without any benenfits. I want off these immunos. before I get cancer. I want some power back.

Mgwarrior

I also take cellcept 2000 mg a day. IVIG never seemed to help me I now only do Plasmap they take a longer time I am also weak please continue your meds you are still young you may start to improve soon. My prayers go out to you hang in there.

Hello MGWarrior, and welcome! (I like the name!) I can really appreciate that you want control, and off the medications. I used to begin every neuro visit with--don't scream but..." and I would go on to ask if I could go off the Imuran. I've been on it since the fall of '99. I figure on my upcoming visit, he might...permit me to reduce my dose... I'll try the "reduce" tactic. Given my improvement over the years, I suspect he was right.

Many people do well on the combination of IVIG and prednisone.

I am pretty much using IVIG and Prednisone to survive right now (plus 90 mg of Mestinon every 4 hours around the clock). I haven't been stable enough to go off the Prednisone yet so I've been on it for about 5 months now. I have had to do 3-5 doses of IVIG about once per month, sometimes every 3 weeks, since January. The IVIG gives me enough of a boost to stop the breathing issues for a few weeks, and I'm able to do maybe one thing per day while it's working. Once it wears off, though, I'm right back to barely staying out of the hospital. Still, it really helps, so I'm grateful for it. I just finished 3 rounds of it yesterday.