[reynolds_km]

I have continued with my efforts to get Santofi to import Mytelase from France where it is still being made. I am asking for a group IND for everyone who needs it.

I received a call from Santofi. January 22, 2013 they are meeting to try and find a way to import the drug for all the patients who need it.

So what do you need to to? CALL SANTOFI!!! 1-800-981-2491

They need your name. they need to know how many patients need the drug so they can import enough drug.

This is NOT a done deal. Your call saying you need the drug will help those in charge see there is a need for this drug.

So please get on the phone and add your name to the list. Or the name of your loved one.

You need to say you need Mytelase, it seems many people are on it because they are allergic to Bromides, so no mestinon. that is my problem.

And make sure you give your name and a contact number.


I probably made that as clear as mud. Ask if you have questions.

[sugrkiss]

What is this drug? Does it work for people that are on mestinon? And does it work for those that mestinon doesn't help? Sorry for my ignorance on this subject. Also have you alerted the mg of USA to help?
Thank you
Jess

[neutro]

Hi Jess,
Mytelase is the same kind of drug than Mestinon, it works on the symtoms of MG, not on the causes.
In France, where it is still available, neuros usually start with Mestinon and if there is any problem with it, switch it for Mytelase.
Maurice.

[korbi_doc]

Ok, I made the call to add my name to the list....have not been on this drug, but would like to try it since Mestinon does not help me much & my episodes of weakness are getting worse...took the M today with no response as yet & my dypsnea does worsen as the weakness progresses....hope this helps for those of you who are so very reliant on the Mytelase....

Dottie

[reynolds_km]

Originally Posted by sugrkiss

What is this drug? Does it work for people that are on mestinon? And does it work for those that mestinon doesn't help? Sorry for my ignorance on this subject. Also have you alerted the mg of USA to help?
Thank you
Jess

I have asked MG foundation to help several times, they have declined my requests.

so Mytelaste, like Mestinon is a derivitive of Prostigmin. Prostigmin was the first drug for MG, and it was pretty rough on the stomach and didn't work very long. Groups at two different colleges worked to create a better medication. One group created Mestinon, the other came out with Mytelase.

In my research I have found studies showing that when given a choice between the two drugs 70 percent of MG patients preferred Mytelase.

There is less gastrointestinal upset on Mytelase. The effects last much longer and patients don't get the wild swings in strength you often get with Mestinon.

With Mestinon I was taking a pill about every six hours and a timespan at night. I woke up just dragging and had to wait for the pill to kick in before I could do anything.

With Mytelase I take half a tab every 8 hours. I can get up get dressed and go. I am also able to ride my road bike a couple of days most weeks. It's not always good, but most days are pretty darn good.

I don't miss waiting for the Mestinon to start working. The Mytelase is always working, at least it is for me.

For some reason in the 50's all mentions of Mytelase stops. The only thing I find is a couple of notes from Neurologists saying they won't prescribe it because it is an inferior drug. I have no idea how they decided that.

it is really easy to overdose. Since I live in a very rural area I carry the antidote with me. Not any worse then the people who have to give themselves a shot after a bee sting.

I always tell people, Mestinon is an old Ford Pinto, and Mytelase is a Ferrari.

I am a big fan. It changed my life.

[reynolds_km]

Originally Posted by sugrkiss

What is this drug? Does it work for people that are on mestinon? And does it work for those that mestinon doesn't help? Sorry for my ignorance on this subject. Also have you alerted the mg of USA to help?
Thank you
Jess

Whoops. Yes it does work for people who are on Mestinon, but you can NOT take both together.

I don't know if it would work for you if Mestinon does not. I think you would have to try it. I know I read a note by a gentleman who had been on it for years, he claimed Mytelase worked for him, but Mestinon did not.

We are all so different. You just have to keep trying things until you get something that works for you.

[southblues]

What antidote?

[reynolds_km]

Originally Posted by southblues

What antidote?

Atropine. Every hospital ER carries it. But I get into some pretty rural areas.

[reynolds_km]

Originally Posted by korbi_doc

Ok, I made the call to add my name to the list....have not been on this drug, but would like to try it since Mestinon does not help me much & my episodes of weakness are getting worse...took the M today with no response as yet & my dypsnea does worsen as the weakness progresses....hope this helps for those of you who are so very reliant on the Mytelase....

Dottie

I am going to bump this topic back up to the top of the list. and take this opportunity to say Thank you Dottie.

It puzzles me why the MG foundation is letting this drug just fade away without a peep. We have so few treatments. Why would you let one go away?

I have learned that MG patients who are having gastro intestinal problems on mestinon should probably be taking Mytelase.

Also if you are gluten intolerant or have Celiacs along with your MG, then you should be taking Mytelase not Mestinon.

[korbi_doc]

My thanks to you for your efforts here....My neuro needs to see me soon, so I'll try to discuss this drug if I can get thru to him (communication hindered due to language difficulty, on my part, lol) I don't see Dr Bertorini who is the "boss" & the MG specialist, but perhaps he would have some input for this if we could get his attention...anyone out there a patient of his??

Every thing I'm hearing about this drug says it should be available to us, my GI upsets hinder my taking Mestinon & the results are not worth the aggravation, so I've nothing to fall back on, cuz of side effects of the others....

Dottie