My dad has been on Mytelase for several years as well. It is quite a scary thought that he will have to go on Mestinon. He has tried Mestinon several times and it simply does not work for him.

We are searching for other alternatives. Will keep you posted.

Its a shame that they take known working drugs off the market, but do no research to replace them with better drugs.

Scared without Mytelase!
 

I have never posted anything online. But, I have been searching the internet for my mom. She has been taking Mytelase also for 60 years. She thought she was the only one. Two days ago she attempted to refill her prescription and was told Mytelase was discontinued. She feels she has only 40 days to live. Has anyone heard of EN101 or Physotigmine? Scared.

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.

re:IND Mytelase
 

Your message regarding submitting an IND to have Mytelase imported is extremely interesting. I have referred my doctor's office to it. Perhaps you could expand on your efforts & give some help.
-Should each person having an IND application submitted talk to the FDA to get their verbal agreement to accept it? Is there a particular dept or person to contact?
-Should Sanofi be requested to accept any shipments? Would they hold it only for a certain person and/or pharmacy?
-If your application is accepted is there a possibility of getting a general idea of the language your doctor's office used in completing the application? This could be quite helpful to others in their filings.
Thank you for all your work, for sharing it and for giving some of us a ray of hope.
PS-I will speak to my local MG chapter & see if they can get the national foundation to help in this matter.

MG meds from UCLA research Neurology
 

I am taking Azathioprine 50 mg 4x per day. I also get IVIG infusions every 2 weeks. I'm in a research group at UCLA. My neuro at UCLA is getting me off prednisone which I was taking for several years along with mestinon. My neuro took me off mestinon. IVIG's are SO expensive but I have good insurance and am on SSDI and long term disability from my work (for 5 years). I'm 62 and started with occular issues at about 56. Had a severe crisis last year and ended up in hospital. That is when they started me on IVIG. It makes a huge difference - don't know if this is a possibility for you or any of the folks posted here. May we find a cure - in our lifetime! :grouphug:

Contacting MG Nat'l Foundation
 

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.

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.

Canadian Pharmacy
 

Did you have any luck getting Mytelase from the Canadian pharmacy that imports from France?

Short answer? No. I tried that, can't be done.

Trying to get help elsewhere.