Mytelase Chloride (ambenonium)
 

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

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

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

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?

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.

Thanks everybody, I was just curious.

Tony

By the way, I will find out today when I talk to my pharmicist, if my cellcept and perdnisone are covered.

Tony

I use Medicare and they have covered all my meds and IVIG treatments.
Mike

medicare
 

mike, do you have an insurance supplement with the medicare rto pay for the IVIG and where do you go to receive the IVIG; such as home, hospital, or infusion center?

I have Champus as secondary insurance. I go to an infusion center in Charlotte. They charge $5,000 per treatment. They wanted $3,500 out of pocket for in home, I said no thanks. I'm likely getting my last IVIG on Tues. they haven't helped me very much. I'm also on Imuran and a bunch of Mestinon. I think my neuro is going to try plasmapheresis next.
Mike

I checked with my pharmacist yesterday and found out my mestinon and cellcept is covered. mestinon has a $8.00 co-pay. Cellcept is another story.

I have been taking name brand cellcept and to continue my co-pay will be over $350.00 a month. The generic is $44.00 but I will have to get a new prescription because it was written with do not substitute on my request after one month on the generic that caused more stomach problems than the brand name. I think I'll try the generic again.

Because of the change in status of my insurance, I am still waiting for approval for my infusions that I was supposed to have yesterday and the day before. No idea what to expect. I do not expect it to be as reasonable as my previous insurance that had a $250.00 yearly deductable.

Tony

I confirm that Mythelase is commonly used in France as an alternative to Mestinon.
Neuro's usually start with Mestinon and if there is any problem with it, switch to Mythelase.
Maurice.

I don't know how useful this info. will be and for who, but I recently started taking mytelase, by my neurologist's recommendation based on some observations that it may be better than mestinon in MuSK, and at least for now, this seems to be the case for me.

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).

Thank you for this post for sure because the mestinon gives me erratic results and messes with my stomach big time so this kind of sounds exactly like what I need. My neuro never said anything about this medication and now im moving to a new one after the new year so it would be a good time to maybe try to change up my medication regimen.(my old neuro was hard to get to try new things)

Desperate for Mytelase
 

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.