Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I read where you had started on methotrexate and wondered how that was working for you. I am asking because I need help. I also have seronegative gmg and take 500mg of Cellcept 2 times a day and 60mg of mestinon 5 times d day which is all my digestive system can tolerate so I have Plex treatments every 2 weeks to help me also. But for the last month I have been having serious problems and neuro is suggesting adding prednisone to all the rest that I am doing. I am concerned because of the side effects of prednisone especially weight gain. I can barely make transfer from wheelchair now and corcerned that if I gain weight I cannot function at all here at home. But I really have breathing problems especilly at night. I use a CPAP machine and have my head raised to almost a sitting position but breathing is still labored. I know I am on the edge of another crisis as I am having problems with my thoat now and function of right leg and hand. I have been researching prednisone and trying to see if there is an alterative. I have had breast cancer 10 years ago and just found out I have a tumor in that same breast. We are going to do a needle biopsis to check it out. I had not heard of methotrexate so I was very interested. I really would appreciate Nano and everyone alse who can help with any suggestions for me. Thank you so very much for your time. Martha
it looks like at this time you have a coktail of meds,amounts and doses seems to have created an havoc of symptoms.
the best sugestion and advise would be for you to have a endocrrinologist, preferably a woman, as they are the only ones whom can sort what meds works or not work for you, principaly haven cancer cells..
i wish you all the best, take care
Andre
I wonder if you might qualify for one of the newer treatments like Rituximab or Soliris? Several folks with refractory MG seem to have been helped by them.
Good Luck
Russ
The only side effect I have had so far have been some sleepy days, but the sleep is wonderfully restorative. I have read that low-dose methotrexate has analgesic properties; maybe that's why the sleep is lovely.
My neurologist is hoping that the methotrexate will allow me to increase the time between Plex treatments. I currently have to have Plex every ten days. It's looking promising. For the past two years, I have become symptomatic at day 7 or 8 after Plex. Amazingly I haven't had to wear an eye patch to the last two Plex treatments, and this week I discovered that I see best wearing glasses from 12 years ago which have much less prism (0 horizontal prism!) than my newer glasses. Also I had a few hours last week when I didn't even feel my leg muscles going up stairs -- stairs have been a challenge for me for over 25 years, and it is not that unusual for me to crawl up steps.
My neurologist doesn't seem to expect the methotrexate to allow me to decrease my prednisone dose of 10mg/day. For that, we are waiting for efgartigimod to be approved as an MG treatment (projected approval date is mid-December 2021).
When we MGers are in crisis, prednisone, side effects notwithstanding, is often necessary to save our lives. Although I was on higher doses, 10 mgs/day for the past two years has kept me stable. I gained about 8 pounds. Also prednisone has given me excess facial hair. (Hello Silk-epil! ☺️)
Please feel free, everyone, to ask me about methotrexate and/or my other MG treatments. I have longstanding seronegative generalized MG. I was unsuccessful with azathioprine (Imuran) and mycophenolate mofetil (Cellcept). So for now I am being maintained on loads of Mestinon (120 mgs every 4-5 hours), methotrexate, prednisone, and Plex.
-Nan
argenx.com/news/argenx-presents-additional-efgartigimod-data-global-phase-3-adapt-trial-myasthenia-gravis. Maybe that was what you were referring to but if not it might be an interesting read. Martha
That's heartening to hear. Martha, thanks for the info.
-Nan
It's a strange illness, because everyone's experience is different. Wishing you the best.
Don't know much about methotrexate and this illness. My wife took it for years for rheumatoid arthritis. Hard to tell if it did anything. She had a cancer diagnosis which is being treated with Keytruda, and so she stopped the methotrexate 3 years ago. We can't tell any difference on her illness. I have not see mention of methotrexate in literature on MG.
For me the question is, how much exercise can you safely do, to kee what muscle tone there is?
Too much or intense exercise can bring on an MG exacerbation. Heat is a trigger for me, so I try not to break a sweat while exercising, and I mostly walk and do yoga. I try to take Mestinon a bit beforehand. Here's a link to the MG Association of America's pamphlet on living with MG. There's a section on exercise.
https://myasthenia.org/MG-Community/Wellness-Strategies
Try to be kind to yourself while you adjust.
- Nan