Originally Posted by reynolds_km

I am also on Mytelase. Fabulous drug, changed my life. I am so miserable on Mestinon. I was finally diagnosed with gluten intolerance and my pharmacist pointed out that Mestinon is a bromide and it agrivates my gluten intolerance. Since Mytelase is a chloride it does not bother me. I wonder why doctors don't offer Mytelase to their patients having gastro issues with Mestinon/

Not only did my issues clear up but the medication works so much better. None of that roller coaster up and down. It just works all the time. Wonderful stuff.

Okay. So the year supply Sanofi said was in the market is already used up. I did find a few bottles through Kmart a couple of months back You could try filling your prescription there.
At the time I got my bottle they had some bottles left in their warehouse. It's always been hard to get that medication in my area.

Luckily the medication is still being made in France. which means you can import the drug for your own personal use. I have investigated this. So far I have a verbal agreement from the FDA for an Investigational New Drug acception. (yeah, I know it's not new, it's a long story.) And I have a verbal agreement from Sanofi to accept the IND and import the medication.

Currently I am waiting for my doctor and the pharmacy department at the hospital he works for to submit the IND and get all the formal approvals. Government and paperwork, I don't have to tell you how long that is going to take.

My IND will only cover me. You will need to contact your doctor and ask him/her to submit an IND through the FDA on your behalf.

I don't understand why the Myasthenia Gravis foundation isn't helping on this. I tried to get some help from them. they told me to just switch to Mestinon. When I told them I could't take it they recommended Prostigmin. I told the woman the FDA made that drug illegal three years ago. And that was all the help I got.

I hope this helps you. I am only sorry I can't get a general IND for all the MG patients on this. I bet there aren't more then 20 of us in the US.

Originally Posted by AnnieB3

How about all of us call or send letters to Valeant Pharmaceuticals, who has the Mestinon brand, to see if they can make a deal with Sanofi to take over the production of it.

I highly suggest this AND make sure they are specific and NICE.

These guys make "deals" all of the time.

Annie

Originally Posted by After Midnight

Mytelase is my lifeline. I have been on the drug for 35 years since I was a kid and nothing else works. Mestinon has never worked well for me, nor Prostigmine. I realize there is no money in it for the drug companies because not enough people use it. But is there no recourse? Are those of us who rely on Mytelase to live supposed to suffer or die becasue a drug company doesn't have to manufacture it? We are not talking about aspirin here. It seems that folks on this blog can ban together to resolve this issue for all of us...at least until we die out. No one new needs to be put on this drug but until the last person expires there should be an obligation from the drug company to provide an essential medication. I wonder if this is a legal issue? I know I am not going to have any quality of life with out it. Hope others weigh in with possible options an/or recourses. Let's not give up.

Originally Posted by reynolds_km

I made my call. this time I was listened to.

I wonder if making a Facebook page asking Sanofi to save Mytelase for the few patients who need it might help. I worry about the elderly people who take it and are not wired enough to get help with their drug being taken away.

Originally Posted by sorrentome

I contacted the National MG Foundation today to see if they had made any response to Sanofi regarding the discontinuance of Mytelase. They have made no response and indicated that they have not heard from any Mytelase users expressing concern about the discontinuance. They took my information and noted my concern. I would urge other Mytelase users to call the foundation amd make their voices heard. Their phone number is 800-541-5454. I would also suggest that if you belong to a local MG Chapter to ask them to lend their support by contacting the National Foundation on our behalf.