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....

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. :D

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?

As far as mestinon causing diarrhea, you can take imodium (loperimide). It doesn't cross the blood brain barrier, so it doesn't make you drowsy. It has saved my life for sure.

I have Celiac's so I can't take the bromides. I had an awful rash. Mestinon was pure misery for me, and it just never worked right.

I saw my neurolgist yesterday. He put in orders with the pharmacy at his hospital and they are going to try to import mytelase. I had mentioned to my oncologist that I was having trouble getting mytelase and she replied that they imported cancer medications from overseas all the time and there was no reason they couldn't import the Mytelase. First person I met who thought there was a way to do it. My oncologist and neurologist are friends and I know they talked about my case and the problem getting mytelase. Who knew getting cancer would come in handy? :)

So long story short the pharmacy at the hospital does the importing and they are going to see if they can find a way to import mytelase.

What I learned is Neurologist rarely import drugs and have no idea how to do it. Oncologists import cancer medications weekly and know exactly how it's done. So tell your neurologist to contact the oncologist he knows and ask how they do it. The nurse practitioner usually does this, at least in the US. And use the hospital pharmacy or the one the oncologist uses. You want a big pharmacy that imports regularly, not your local pharmacy. Once the drug gets to the big pharmacy they can mail your meds to you.

Your neurologist will need to write a letter saying why you need this drug and that there is no other treatment that will do. That letter will have to go to the out of the country pharmacy to be included in the package with the medication. And they must ship it either UPS or FedEx. If you don't use one of those two shippers the drug will not arrive in a timely mannor.

I have no guarentee this will work. But it does seem worth trying. Everyone will have to try this route for themselves. I wish I had found a way to just straighten out this mess for everyone.

I will keep everyone informed with what I learn.

Reynolds, one reason for the cost of Mytelase in US could lie in high import taxes, protectionism...?
You should also add shipping charges, but that should be miminal.
Maurice.

As I understood it there would not be import fees on the drug. But I could be wrong. It's all very complicated. Like anything that involves going through governments.

Sanofi made Mytelase here and I think my insurance paid almost $200 dollars for the last bottle of 100 I got.

I just hope this attempt to bring the drug in works.