NeuroTalk Support Groups - Mytelase News!! Take Action!!

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NeuroTalk Support Groups (https://www.neurotalk.org/)

- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - Mytelase News!! Take Action!! (https://www.neurotalk.org/myasthenia-gravis/182854-mytelase-news-action.html)

reynolds_km

01-30-2013 01:15 PM

Quote:

Originally Posted by korbi_doc (Post 952491)

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

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.

cait24

01-31-2013 07:13 PM

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

reynolds_km

01-31-2013 10:30 PM

Quote:

Originally Posted by cait24 (Post 953042)

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?

reynolds_km

01-31-2013 10:49 PM

Quote:

Originally Posted by cait24 (Post 953042)

Is it less effective, more side affects?

thanks
kathie

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.

cait24

01-31-2013 11:16 PM

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

reynolds_km

02-01-2013 09:54 AM

Quote:

Originally Posted by cait24 (Post 953087)

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

neutro

02-01-2013 05:54 PM

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.

Dinah Lee

03-03-2013 11:54 PM

Thanks for Mytelase

Quote:

Originally Posted by reynolds_km (Post 950445)

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.

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

sorrentome

03-18-2013 12:33 PM

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.

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