Quote:
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.
|
Thank you very much for this information and for sharing your efforts here.
I am just beginning to work on this with my father, who is in need of Mytelase for his MG. We will also be following up with Sanofi directly and will share what we learn here.
The IMD may prove to be the most reliable avenue, so we look forward to hearing more about your effort, and perhaps we can work together on this.
I agree that the Myasthenia Gravis Foundation should get behind this effort with us and help facilitate this process. Let's continue to organize here and together perhaps we can have some leverage with the Foundation to request assistance with this effort.
As you express, there are others such as the elderly who are not able to advocate for themselves. Hopefully our efforts will benefit not only ourselves, but those and others who rely upon this medication. Uniting our efforts, may be the best way to insure access to this critical medicine for us all.