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Suggest medication for Myasthenia Gravis apart from Mestinon and Prednisone

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Posted on Fri, 13 Oct 2017
Question: Hi. I have had Myasthenia Gravis for 23 years and I am only 39!! My symptoms came on very quickly and very severely and I had a Thymectomy within 6 weeks of getting diagnosed. I have not been taking prednisone or mestinon regularly for about 18 of those years. I don't get major symptoms very often and usually just sleep them off. The last week I have had pretty noticeable symptoms and they don't seem to be going away with just rest. But, the last about 8 times I have taken my Mestinon I actually have felt like they have made my symptoms worse. So I am afraid to take the Mestinon! And I refuse to go on Prednisone!! It was the worst medication of all time and I only will take it if I have pneumonia. What are the newest treatments and medications other than mestinon or prednisone. Please tell me there is something better nowadays than that.
Please Help!!
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Answered by Dr. Olsi Taka (6 hours later)
Brief Answer:
Mestinon and prednisone remain initial options I am afraid

Detailed Answer:
I read your question carefully and I understand your concern regarding medication side effects.

Mestinon and steroids like prednisone remain mainstay of medical therapy even today I am afraid, in particular as initial choices. The other options include mainly immunomodulating therapy. There are several of them, the most commonly employed is azathioprine. Other options are cyclophosphamide, rituximab, cyclosporine and mycophenolate. There are not enough studies about these last options apart from azathioprine, so they are usually used when other traditional options (mestinone, prednisone, azathioprine) fail, not as a first choice.

The issue with immune modulators like azathioprine is that while effective it takes several weeks up to 3 months to achieve full efficacy. So that is why mestinone and prednisone are still the initial options, azathioprine is used to control the symptoms and to reduce/avoid prednisone in long-term. It goes similarly for the other immune suppressors I mentioned, if they are to be used it is for long term control of disease activity, they are to be carefully considered, not used sporadically.

Another option for short term control is intravenous immunoglobulins. They are effective, but are not used in mild cases, only in moderate or severe cases worsening into a crisis to quickly control the disease, not for long term control and do not avoid the use of steroids.

I remain at your disposal for other questions.

Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
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Follow up: Dr. Olsi Taka (9 hours later)
What about my symptoms actually getting worse from Mestinon? Have you ever heard of that happening? What would cause that? Should I be avoiding Mestinon?
doctor
Answered by Dr. Olsi Taka (4 hours later)
Brief Answer:
Read below.

Detailed Answer:
Mestinon shouldn't be making the symptoms worse. While often it is not enough, considering its mechanism of action and everyday experience, there is no reason why it should make the symptoms worse.
Explanations could be that it simply is not enough and the worsening of the disease itself make it look like it was due to mestinon, as you must well know there are a lot of fluctuations in myasthenia. Another explanation might be that symptoms (which you do not mention) are not due to myasthenia (although I am inclined to believe you are able to recognize them after so many years with the condition). Another possibility is that its effect is wearing off to soon and you perceive that transition as worsening. In that case taking sustained released form or smaller more frequent doses might help.

Let me know if I can further assist you.
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
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Dr. Olsi Taka

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Practicing since :2004

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Suggest medication for Myasthenia Gravis apart from Mestinon and Prednisone

Brief Answer: Mestinon and prednisone remain initial options I am afraid Detailed Answer: I read your question carefully and I understand your concern regarding medication side effects. Mestinon and steroids like prednisone remain mainstay of medical therapy even today I am afraid, in particular as initial choices. The other options include mainly immunomodulating therapy. There are several of them, the most commonly employed is azathioprine. Other options are cyclophosphamide, rituximab, cyclosporine and mycophenolate. There are not enough studies about these last options apart from azathioprine, so they are usually used when other traditional options (mestinone, prednisone, azathioprine) fail, not as a first choice. The issue with immune modulators like azathioprine is that while effective it takes several weeks up to 3 months to achieve full efficacy. So that is why mestinone and prednisone are still the initial options, azathioprine is used to control the symptoms and to reduce/avoid prednisone in long-term. It goes similarly for the other immune suppressors I mentioned, if they are to be used it is for long term control of disease activity, they are to be carefully considered, not used sporadically. Another option for short term control is intravenous immunoglobulins. They are effective, but are not used in mild cases, only in moderate or severe cases worsening into a crisis to quickly control the disease, not for long term control and do not avoid the use of steroids. I remain at your disposal for other questions.