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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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07-05-2011, 04:42 PM | #1 | ||
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I started medicare July 1 with rx suppliment and the only two meds listed for MG are mestinon and Mytelase Chloride (ambenonium).
I do not remember Mytelase Chloride ever mentioned on this site or any other web site or in any literature about MG as far as that goes. Tony |
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07-05-2011, 05:30 PM | #2 | ||
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Grand Magnate
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Tony, I have absolutely no experience with this drug and don't know anyone who has. You can download the pdf and compare it to that of Mestinon. It reads just like Mestinon. Is it a generic version? Mrs. D?
Often an "alternative" drug is listed in a formulary because it's cheaper. The insurance company's "co-pay" is, therefore, cheaper. Stick to what you and your doctor have decided is best. http://www.sanofi.us:80/l/us/en/layo...4-5B972A335231 http://www.sanofi.us:80/l/us/en/layo...4-9859D8B2687B Oh, and Sanofi is the company who also brings us Ketek/Telithromycin, which should not be taken by MGers. Ever. Annie |
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07-05-2011, 07:33 PM | #3 | ||
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Senior Member
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It's an acetylcholinesterase inhibitor similar to Mestinon (pyridostigmine):
"Ambenonium is used less commonly than neostigmine or pyridostigmine but may be preferred in patients hypersensitive to the bromide ion. Ambenonium produces fewer muscarinic side effects than neostigmine, but more than pyridostigmine." http://neurolex.org/wiki/Category:Ambenonium Abby just googling around |
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07-05-2011, 10:54 PM | #4 | |||
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It has been used in the past, mostly in Europe.
It has a somewhat different mode of action and pharmacology than mestinon. According to my neurologist it may possibly be more effective in some patients with MuSK. I do not see any reason for someone who is doing well on mestinon to change to it, but it could be an option for someone who is not responding well to mestinon. Like mestinon, it is only symptomatic treatment and not disease-modifying. With the advantages (once you stop it, you lose its effect very rapidly) and dissadvantages of every other symptomatic treatment. I am surprised that those are the only options of treatment for patients under medicare. Aren't patients under medicare given the chance for remission? |
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07-06-2011, 12:06 AM | #5 | |||
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Wisest Elder Ever
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This drug is listed in the FDA Orange book reference with only the brand name MYTELASE.
I don't see a generic approved here. It is probably not a big enough seller to have a generic in US.
__________________
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07-06-2011, 11:40 AM | #6 | ||
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Thanks everybody, I was just curious.
Tony |
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12-09-2011, 02:59 AM | #7 | |||
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Quote:
I don't have any good explanation for this, but as opposed to mestinon (which I stopped taking due to its hechtic effect on my illness) it has a much more stable and predictable effect. It is longer acting and has a somewhat different mode of action than mestinon. For some reason mestinon is preferred by most neurologists (in fact none of my previous neurologists ever mentioned mytelase or suggested trying it). |
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12-10-2011, 04:44 PM | #8 | ||
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Quote:
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12-24-2012, 02:28 AM | #9 | ||
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Some of us can't give up on attaining Mytelase. It is the only drug that works for us. I don't know the reason why Mestinon doesn't work but it never has. In fact, Mytelase has always been more expensive and harder to attain. I would not switch to it if you aren't currently using it. If you are using Mytelase then we have a problem. Right now I am working on attaining it from the DEA or maybe France, if necessary. The drug company doesn't have to allow anyone new to have the drug but those of us who have been using it for years should have access until we die. It seems like the ethical thing to do. As we "oldies" expire then the drug will no longer be available to anyone. But you can't just discontiue it in mid stream. I will have to go back on a respirator full time and not be able to swallow or talk. So the effects for me are severe. I may be able to walk a little and use my arms for part of the day but nothing else works. I know this from past experience. Times are tough.
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