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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Treatment Options

deleted_user
deleted_user
I have had a Thymectomy and I am currently taking mestinon and provigil. I have been on prednisone in the past as well and with the severe side-effects and the unknown long-term effects I don't feel like this is an option any longer.

Plasmaphersis and IVIG are the only other treatments I know of and they are only used for emergency situations. I feel like I am at a dead end! Are there any other treatments that any of you know of? If so have you used them and what was your experience? I appreciate your time and advice!
deleted_user
deleted_user
I have heard that they are trying the drugs they give to transplant recipients, maybe u could check into that. the mg foundation page had the info, I think. I've done so much research that I forget where I got the info now. good luck
deleted_user
deleted_user
I've been on IVIG for over a year. I don't know if I ever counted as an emergency case, but when I looked up the insurance rules for covering it, they said something to the affect of:

"IVIG is warranted for the treatment of MG IF the patient is in myasthenic crisis without it, including difficulty breathing or swallowing OR other treatments have been contraindicated."

If your doctor documents your case correctly, I think you could get IVIG covered, especially if you are having terrible side effects from the prednisone. I think terrible side effects count as a "contraindication".

It couldn't hurt to talk to your insurance carrier and to your doctor - probably your doctor first because you don't want to say the wrong thing to insurance people.
deleted_user
deleted_user
I have read that imminosuppressants such as cyclosporine are used. Go to the website for the Myasthenia Gravis Foundation-has speciic information on treatment Sophia
Sarah100
Sarah100
Please go on the PubMed site. It's the NIH's site listing all medical research on a given topic. If you type in "myasthenia" as the topic and select "PubMed" for the search, you will get abstracts of all medical research/journal articles beginning with the most recently published. The site discusses the effectiveness of so many treatment options that you can consider. Good luck. Sarah100
kristy7116
kristy7116
I'm currently taking cyclosporine. I have been on it for about a month so far at 100mg 2x day. I had no sucess with prednisone or imuran and actually felt much worse when on both. So far so good with the cyclosporine and I haven't had any side effects. Maybe you should ask your doctor about this drug.
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