well color me frustrated. I had all these problems with Mestinon. Terrible diarrhea daily. It turned out I am gluten intolerant. Which means I have trouble taking the bromide drugs, and Mestinon is a bromide.

So my doctor switched me to Mytelase and my symptoms disapeared. and it works longer. So one pill every 8 hours. life changing drug. I do not know why doctors don't prescribe it more. I have never met anyone who takes it. My pharmacy has had a devil of a time getting it.

then Sanofi announced in May they had stopped making it. So now there is only one acetylcholinesterase inhibitor for MG.

I am so frustrated by this. And I guess I just have to express that.

MG is so rare that it is a wonder that any drug is available for it. There is not a lot of profit if there are not a lot of cases.

Hi, Reynolds_km. Mestinon itself is gluten free. I have celiac disease and have no problems with it. I know that bromide can be an issue for some people.

I looked up using a pharmacy who does compound drugs (making drugs from raw materials, sometimes without additives) and that's not a good idea either. They are not very regulated as of yet.

Mrs. D might know about this. Can you do a new post and ask? Sometimes when you dig up an old post, your questions can get lost in it.

The main reason people have issues with Mestinon and the GI tract is that an increase in acetylcholine will increase stomach acid. You need acetylcholine, gastrin and histamine to make stomach acid. I don't have stomach acid to begin with, so Mestinon does not have that effect on me.

You should make absolutely sure what the cause of your GI distress is. There are MANY causes and a good internist should try to get at the true cause. Things like H-Pylori, lack of stomach acid, a reduced gel coating of the stomach (often from too many NSAID's), etc. can cause problems.

I hope you can find something that will work for you.

Annie

This is a lame excuse. I can give you an example of numerous as rare diseases in which there is a lot of research and development of new medications.

Mytelase and mestinon are not the same. And some people do much better with one or the other. Most neurologists don't even think of trying mytelase when a patient doesn't seem to have the expected benefit from mestinon.

Sanofi stopped producing it in the USA because very few physicians are prescribing it. The MGFA (a patient's organization) doesn't seem to care ( I am not sure they have even heard about it). So, what incentive do they have to keep on supplying it?

And now we have another orphan drug.........