I just realized this question was submitted by Team DS? That is not a person is it?

I think Team DS is the admin. They send out messages and start topics now and then.

Mestinon has been helpful for me at times in managing my symptoms but, like TJ said, it doesn't control the disease. Mestinon's management of my symptoms is inconsistent though. It seems if my symptoms get started mestinon will not alleviate them. It works best for me if I take it every 4 hours, 60mg, and add 30mg if I feel the symptoms starting.

Hi TJ,

Can you describe a bit more about this 6 year remission? Also, if someone only takes Mestinon but not Prednisone or Cellcept, does that mean the MG will definitely get worse if left untreated?

I was under the impression that MG was a disease that comes and goes without much rhyme or reason, and all treatments were temporary solutions. Then again, I feel like I haven't really had a good neuro to explain all this to me yet, so if anyone could clear this up for me, it'd be greatly appreciated!

Thanks in advance.

Hi. I have had severe refractory myasthenia since 2000 and have been on mestinon for almost 11 years now. I take 60mg every 4 hours day and night. I am lucky in that I don't suffer the terrible diarrhoea which I know can be a side effect of mestinon but do find it exceptionally rough on the stomach and have had to take Nexiam for severe heartburn since being on it. I am also on heavy immune-suppression though so perhaps the Mestinon cannot alone be blamed for this. I have found that taking the drug with a little drinking yoghurt has helped to an extent. Like Catnap i find the effects of mestinon variable. I find if I take it when I am symptomatic but still coping it definately makes a difference and I daren't be late with a dose. I have noticed however that the mestinon has little or no effect when I go into crisis though. My neuro has told me that is because at that stage my receptors have been destroyed by the antibodies and so there is nowhere for the added Acetyl choline brought about by the Mestinon to act. When things start settling after PLEX the Mestinon starts to help again.

I have found that the effects of the Mestinon and how much causes side effects also varies. Some days taking my usual dose will cause muscle twitches and cramping whilst other days are fine. I think it has something to do with how much I have eaten that day with the stronger effects on the days I eat very little.

In addition to the Myasthenia I also suffer from Asthma and the Mestinon has on occasion caused severe bronchospasm with higher doses so it is a bit of a juggle and compromise between myasthenic symptoms and asthmatic ones.

Mestinon does provide some relief sometimes and for that I am very grateful but asx the others have said it certainly isn't curative!

Wishing all a healthier and strong 2011!
Ange

Hey Bluebird, there is no factual data to support any claim of any amont of said years to be on Mestinon only. Only testimonies that I have read of people claiming this, and I don't even know how sever their MG was. You may never achieve a remission at all, especially if MG is not suppressed. There are people with MG in this site that have been on Mestinon only for decades with no remission...As I said in so many words, if your MG can be controlled easily with Mestinon only, then maybe you can afford to wait and see IF the disease retreats on its own, and/or comes and goes for you. You then also take the risk of the disease progressing also...All purely symptomatic and situational to ones comfort level. I was stubborn and basically forced into a decision for treatment of MG. I wanted to go with Mestinon only if my MG would've let me..

I am one mestinon 2 tabs every 4 hrs and am slowly weaning the prednisone also on Imuran50mg 3times a day my dr. put me on prylosac 1tab in the am I mhave not had any problems since starting this treatment.
Goodluck

I am on Mestinon Timespan once a day routinely with the option to take another if I need it, which I rarely do now that I have changed my lifestyle to accommodate my MG (I never go out at night and if I shake and wobble then it is in the safety of my own home, etc.) I couldn't take Mestinon because of the horrible side effects. Yes I know that Mestinon T/Span is not a cure but it masks my symptoms to get through most days.

I was diagnosed in 05, surgery in 06 and have been on Mestinon since 09 and my MG has not got any worse in that time, if anything it has improved.

Mama20 - I suppose if the prednisone starts working to turn down your immune system (and the MG), and as a result you don't need as much Mestinon but still take as much as you were taking without the Prednisone, then the combination could cause more weakness. However, Mestinon and Prednisone are standard first-line treatment used in combination for treating generalized MG. I've been on both of them for almost 2 years now. I'd listen to your neuro, not the pharmacist.

Hope that helps some.

I take Mestinon every 7-8 hours. Sometimes when the day is hot or when I do some great physical exertion I usually take it before this time, at about 6 hours.

HI all...
I haven't posted here very much since my initial post a few years ago, but I read occasionally and try to response when I think I have something to contribute.
I have had symptoms of MG from a very early age...4-5yrs old and have had 3 or 4 bouts of extreme weakness a year (arms/legs) where I could not walk, stand up, comb my hair....through early adolescence. (mid to late 1950s).
My more severe symptoms seemed to diminish through high school and when I had problems with strength I mostly was able to mask them by laying low, making excuses, feinting flu...etc. My symptoms only seemed to last a few days to maybe a couple of weeks and since I was in high school it wasn't a big deal...
I joined the Navy in 1967 and was able to get through 10 years of submarine duty without having any negative issues when my symptoms flared.
Married in 1984 and was blessed with 3 beautiful daughters over the next 7 years...but my symptoms of extreme weakness was increasing to the point that I was unable to lift arms/walk/carry babies upstairs, etc. In 1991 I was diagnosed with MG...put on 60 MG of mestinon 4Xdaily. The immediate turnaround in my strength was truly amazing. As background info...I have always been an active person (running, hiking, backpacking, staying active) for most of my adult life.
Since my diagnoses in 1991, I have been taking Mestinon 4 times daily and in 2007 added 180 MG (Timespan) mestinon at night.
I am still very active: I run an average of 80 - 90 miles a month, run 3 half marathon races every year for the last 20 years, and lift weights at a gym 3 - 5 times a week.
I'm 61 now and have controlled my MG using mestinon for 20 years....