Mytelase News!! Take Action!!
 

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.

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

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.

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.

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.

What antidote?

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

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.

I had acid reflux and terrible diarhea on Mestinon. Also stomach issues. All that went away when I started Mytelase.

I called my Neuro's office and asked to try it. But he's really busy, aren't they all. So I and my GP just decided to try it on our own. It's a small town and it's really easy to get ahold of him if I have trouble. and I didn't have any trouble at all.

it did take a while to get the dose right. It just worked so well for me. I was amazed by how little drug it took to do the job.

reynolds_km, let us know how you do on the Mytelase. I am just starting Mestinon and not sure I am at an effective dosing level yet. So I am curious, why are the doctors not prescribing Mytelase? Is it less effective, more side affects? Also, why are they prescribing the short lived mestinon rather than the time-release? Is this all about price?

thanks
kathie

Hi Katie,

I do fabulous on Mytelase. It's the closest I have ever gotten to my pre-disease self. I am taking a pill every 8 hours. My strength remains strong through the entire 8 hours.

I don't know why the doctors don't prescribe Mytelase. My neuro did his residency on an MG ward. He's the go to MG guy in the area. He didn't know about it. He knows I do wonderfully on it. I don't know if he has tried it on any of his other patients or not.

As for Mestinon. The Time release pill is just for night time use. You take it before bed and it slowly gives you medication over night. The effect is pretty uneven, so you don't want to be taking it during the day.

did I answer your questions?

let's see. Everyone is different, and this disease is very different for each person.

So is it less effective then Mestinon? For some people it is. I found a study done around the time it was introduced. The MG patients they used in the study were on Mestinon. they were switched to Mytelase, 70 percent of them preferred Mytelase.

the side effects are about the same as for Mestinon. the only problem is there is a very short skip from side effects to overdose.

I an only guessing here, but maybe that is why doctors stopped prescribing it. If you take too much it's so easy to overdose. and it can get bad very quickly.

that said there are people who have taken it for thirty or more years with no problems at all.

Thanks reynolds_km, I will keep that in mind if I do not do well with the mestinon. So far the only bad thing I noticed if that I get really fatigued before my next dose is due, so maybe I am not on a high enough dose yet. The doctor said to try it for a month, so I will wait and see.

I am glad it works for you.

kathie

Katie that is one of the problems I had with Mestinon. It always stoped working before I could take another dose.

Say I was taking it every six hours. Take the first one and you have to wait as much as two hours for the effect to build up and make it so you can move. then there are two hours of pretty good strength. At that point my strength would begin to ebb. And it would get worse and worse long before I could take another dose. that is the roller coaster effect that doctors and patients talk about.

I never get that up and down with Mytelase. It just works. my strength stays the same pill to pill.

To my delight I found I could ride a recumbent road bike on Mytelase. I could never do that on Mestinon. I don't get very far. I don't go very fast, but I have a wonderful time getting there.

I love Mytelase, it has greatly improved my guality of life. :D

km

Hi Cait,
If the effect of Mestinon wears off before you are due to take the next pill, simply try to take one pill sooner and observe the effect...!
Maurice.

Thanks for Mytelase
 

Kim:

Thank you so much for your effort to get Mytelase. I will call.
I have taken Mytelase for over 50 years and have done extremely well on it.
Mestinon is impossible to get right. With Mytelase, you know exactly where
you are at all times. Therefore I am not taking anything right now. I would
rather go without than struggle with Mestinon's murky assistance.

Dinah

Why MG Fondation doesn't help
 

I've been taking Mytelase for 50-60 years with great success.
If you'd like to know my take on why the MG Foundation of America isn't interested in assisting us in making Mytelase available, see my entry on the "Mytelase Discontinued" thread. It also includes my view on the National MG Walkathon Fundraiser ripoff.