There is a discussion of using prednisone at https://myastheniagravis.ca/article-mg-patients-must-understand-critical-use-of-corticosteroids/

"Improvement usually begins within weeks of when high dose theraphy is initiated, (Prednisone 60mg a day) and it may even work within a few days in some. The vast majority will respond by several months. Note that no other drug has the profile of allowing patients to maintain a predictable and sustained recovery over the first few months after onset."

I was hoping you would respond to my post. So it seems that Prednisone is about the only way to go, except for Imuran. I am taking my phone with me to the neuro's today, so I can show him this, although I am sure he knows it, but ya never know. I took 30 mg today and just took my third Mestinon and it is 1:00 o'clock. I am feeling a bit better, but not like I did before, when I could go about my business as usual. I do feel limited and slow. I guess I will see what he says. I never got as high as 60 mg of Prednisone, but went to 50. That was about 18 months ago (in April) and it worked like a magic drug; now not so much. IF I can get this back under control, I guess I will never taper down again to below 15 mg as this is the second flare I have had when trying to cut it down or stop altogether.

The thing is, I was on 2.5 mg a day and felt great and that is when I stopped. I don't think I should have ever done that and then again, felt great, tapered down to 2.5/5.0 and then had this flare.

Hi Geo, Hope you got some good info from the doctor. My only thoughts on the issues you are having are this, First, have you been on any thing like Celcept? I am on 4000mg per day and doing well. This drug takes weeks to get into your system. Secondly, have you had any plazamapheresis? This is a quick fix and very temporary. When I was really bad, with this I felt better in a day or so.

He put me on 40 mg a day of prednisone and see where that goes. We talked about Cellcept and Imuran, but you are subject to monthly blood tests and some serious side effects down the line and he did tell me it would take about 6 months to see results. I decided to just stay with the prednisone and Mesitnon and see what happens; if it doesn't work, then onto something else, but at this point, I am just willing to take my chances with that.

I have come to realize this is not something that gets better with time. I feel it can get worse and I am resigned to taking the 40 mg a day and hopefully can taper down like I did before, but will never go below 15 mg again, or maybe 10 depending. Twice I have felt almost perfect only to first go off the prednisone when I was down to 2.5 a day and then got the double vision; second time, went down to 2.5/5.0 and now this, so it is winning.

He has never mentioned plazamaphoresis. I will have to research that, but again, so many people on this board have tried so many things w/o much benefit. I know it is different for everyone, and I felt perhaps I would get through this with just the prednisone and I may if I can get back on track, but it is always there it seems in one form or another.

How long Wski have you been battling this? You seem to have a pretty good grasp of the situation as does Rhanson, so you two have really helped me. Thank you.

Hi grecogirl, What are the weather conditions where you live? Very cold/hot? Are your vitamin D levels at least in the normal range? Many recommend much higher levels for those with AI disease. See Grassroots Health. See Vitamin D Wiki: there, read why Vit. D works for AI diseases. Read Vit. D and Myasthenia Gravis studies.

Your post made me laugh. I live in Colorado, where sun is plentiful. In fact, my neuro said most patients who live here don't need to take Vitamin D, but that is a good tip and I think I did take it in the beginning for a while. I will double check the research on that. He didn't say anything about it when I saw him last Friday. So the 40 mg is helping, but not completely and I still need the Mestinon. I can get around, but slowly and cannot participate in any moving activities, such as tennis or bike riding, which bums me out totally. I am very depressed through all of this as well, but will not go on any meds for that; the prednisone and Mesitnon is more than enough. I am a Tylenol can fix anything type person; no prescription drugs ever for me.

Thanks for you reply!

Hey Geo. I have been in this battle for just over a year. I am doing well right now considering I am also battling COPD, CHF, and diabetes and high blood pressure. I have had no side effects from the Celcept (mycophenolate), and the cramping of my hands and feet have been cut in half because I cut my mestinon in half. I want to go up on the predisone asap but it really messes with the blood sugar. I am not happy about taking 26+ pills per day, but I am doing better. I am grossly over weight and that does not help either, but I am now able to walk a little and go places. I have made several trips to the stores and can drive safely again. My vision has improved and the breathing has improved.

gg, Happy to bring a little sunshine into your life. Please refer your neuro to the Vit D info sources I provided in my previous post.