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...

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Nanosecond 09/25/2020

Has anyone out there been able to control their seronegative generalized MG with one of the non-steroid immunosuppressant drugs? I had to discontinue both Cellcept (after 8 months) and Imuran (after 21 months) due to side effects. Once my liver enzymes return to normal, my neurologist will decide the next course of action. Last time I talked with him, he was thinking of trying tacrolimus or cyclosporine. Although I have read most of the meager scientific literature on the use of these immunosuppressants in MG, there isn't much research pertaining to seronegative generalized MG. Plasmapheresis is effective in managing my MG, but each treatment only lasts about 8 days before the whole caboodle of symptoms starts creeping back. I am currently taking 10mgs of prednisone per day and having plasma exchange every 10 days.

PeterL 09/26/2020

Hi Nan

Know very little (nothing really) but not sure if you will have seen this

https://pubmed.ncbi.nlm.nih.gov/31385879/

from this main page

https://pubmed.ncbi.nlm.nih.gov/?term=Seronegative+Myasthenia+Gravis

Peter

Nanosecond 09/27/2020

Peter, thank you for the link to that article. No, I hadn't seen it before. Efgartigimod looks particularly interesting as a possible treatment.
- Nan

Newfiemom18 09/27/2020

Hi Nan,
I was dx with seronegative MG in May of 2018 . I can't take prednisone because I also have POTS and it messes with my heart rate so I started with Cellcept. I developed a sensitivity after a few months so I switched to Cyclosporine. I had no side effects and noticed a big improvement on the Cyclopsporine about 2 months later. I stayed on the drug about 15 months and went off in January with success. I tried the decrease in the drug with my doc permission at u of M because I was feeling great and worried about covid . I should also say that I have permanent respiratory weakness of the diaphragm and I use a non invasive vent During the day when needed. I still take one pill of mestinon in the morning usually.
I am now able to exercise most days and enjoy my hobbies ,friends and family. I still get lots of rest ,try and eat healthy . sometimes I have harder days so i rest more but over all I am doing really well. I feel I have found a decent balance as long as I can stay healthy and away.from germs! I hope this helps. Good luck
Cyndi

Nanosecond 09/27/2020

Hi Cyndi, This really helps -- a seronegative patient who improved on cyclosporine!! Who knows if it will work for me, but I now have some hope. Thank you so much.❤️
- Nan

tmarevans 09/30/2020

Have you seen that the Center for Medicare and Medicaid Services (CMS) is proposing to retire the existing Plasmapheresis coverage policy. I received my notice from MG Foundation of America. ( I am also seronegative generalized mg.) they are fighting this proposal. I signed their petition. It is on their website if you are interested. But Monday, Oct. 5 is the deadline. myasthenia.org/Advocacy/CMS-Petition

Nanosecond 09/30/2020

Yikes Martha. My medical insurance is through my husband's employment, but of course I will sign the petition.

I am considering trying IVIG. New research suggests that it may be as effective as plasmapheresis, and then one can go to subcutaneous immunoglobulin which is administered by the patient at home (once a week, I think). Since I no longer drive, it would save time and trouble for me going back and forth to the hospital. I am nervous about trying IVIG and SCIG, but most MG patients don't seem to have a problem with it.

Did you find transportation back and forth to your Plex treatments?
- Nan

Nanosecond 09/30/2020

Hi Martha. I saw in your other post about CMS and the coverage for plasmapheresis that IVIG doesn't work for you. So much for that option. :-(
- Nan

tmarevans 09/30/2020

Yes Nan that is true. But please keep me informed if you try something different like IVIG. I guess I need to research IVIG more but a couple of years ago before I was not as stable as I am now I inquired about IVIG. He said it was not strong enough or fast enough. I was going into mg crisis. It would take being inpatient at the hospital and starting PLEX immediately. Then skip a day and doing 4 more treatments over the next 5 days. After that I was strong enough to swallow, eat soft foods, breathe on my own and walk out of the hospital. When I was admitted I could not do any of those things nor could I talk or have breath to do so. He said IVIG would not work that fast and because my body keeps making the antibodies you cannot gain fast enough. But they keep learning more and more about this mystery. But do let me know what you decide to do. I am just praying that they will reconsider about this especially in a life or death emergency situation.

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