I have the final word. There will be no more Mytelase in the US. It is still being made in France and you can import it for your own use.

I am sorry. The people I talked to did want to provide it. they were very nice and I greatly appreciate all the work they put in on this. In the end it costs to much to make for the few people who take it.

So there is no more Mytelase.

So another thought. Has anyone tried contacting their Senator to see if there is something that can be done that way? I really hate to just give up on this. There just has to be a way to make this medication for those who need it.

It shouldn't be so hard to import it from one of the countries that still make it.

Mytelase is sold in french drugstores only by prescription.
Would it be possible for one US or canadian MG association to contact a french or belgian drug wholesaler and to import them?
Maybe this could be banned by USDA? There might also be high import taxes?
For your info, the full selling price in France is about 8 (eight) US$ per box of 50...
Maurice.

Neutro said, "...canadian MG association to contact a french or belgian drug wholesaler and to import them? ... "

Nice to see you, Maurice. Mytelase was rare here however, I remember a woman from "Montreal" who said a physician (Prof.) in France prescribed it.

I'm out of the loop, but I like your idea, and I will do what I can to inform some MG Associations, as well as Muscular Dystrophy Canada. It would seem to me that a pharmaceutical company would want to make every effort to sell this drug. It could also be that there was limited demand here. I would suggest that many MGers would be willing to give it try.

As Reynolds mentioned, perhaps an influx of calls or mail to the pharmaceutical company for those wanting this drug?

Cheers....

We have tried calling the company and the US MG foundation and they say just take Mestinon. Well those people I have talked to are allergic to Mestinon and can not take it. I am allergic to Mestinon and dread taking it again. I suffered with it for years because my doctors did know Mytelase even existed. A friend found mention of the drug and suggested I try it. It was life changing. I was told the daily severe diarrhea was just part of taking an acetocholase inhibitor. but it wasn't. I never have that side effect on Mytelase.

Currently the MG foundation has a letter on their site saying it's gone, stop bothering us. Yes, I am paraphrasing.

I am taking the sugestion to call my senator.

Reynolds, sorry for the confusion, I meant 8 US$ per bottle of 50 pills...
Maurice.

wow. that's really reasonable. Santofi said they could not import the drug for the patients who needed it because it was terribly expensive.

out of curiosity I checked their financials. From 2002 to 2012 their profits quadrupled. So it's not like they are hurting for money.

I can't help thinking there is some one out there who can solve this problem.

I guess I just keep working on it.

Thank you for answering my question.

So if that's what it costs you, what would it cost a foreigner per bottle?

Thank you Maurice.

I agree with your resoning. I too wonder why the MG Foundation didn't simply create a drug bank for Mytelase so the few people who needed it could still get the medication.

I did speak to the FDA, they would be the ones in charge of allowing the importation. They were very receptive to letting it be imported. The only thing that makes the drug from France illegal is the label. Put a new label on the bottle and it could be sold in the US.

This problem is so simple to fix, we just have to find the right person to help us fix it.

Maurice when you say it is $8 a bottle for fifty, do you mean pills or bottles?

And please keep in touch, we may need your help. I could use an excuse to visit Paris.