My sypmtoms fluctuate depending on the weather , if I have overdone in activity, if my body is fighting infections, stress and other unknown reasons. I take Imuran, I had side effects at first - but it's really helped me. Sometimes the dosage of mestinon has to be increased.

What did you mean when you said "harder to take the mestinon"? At first and if I increase my dose, I eat a couple of cracker and drink a lot of water.

I am sorry you are having a tough time. I hope you find the answers that you need. Hug!

Barbell I think I am so wiped out I either just am way to exhausted & the light issue of swallowing combined & or my brain fog! I hv thought the weather really plays a role in my faiars. But my body all over but always my legs ache like a dull yuky ache. I hve taken UP TO 12 MESTINON A DAY PER DR ORDERS IT HELPED BUT I AM DOWN TO 4-6 now & still spend most my days resting! Just getting a bath or my hair washed is major event!

mellywil - My husband, Bruce, seemed to be doing so well when he came home from the hospital last September. Even went back to work. But since he had pneumonia & the blood clots in his lungs, he is having weakness in his legs now that he didn't have originally. He has to use a walker & his balance is not so good so I try not to leave him for very long. The dr. has increased his prednisone from 10 to 15 & the azathyoprine from 150 to 200. Mestinon is still at 60 x 4 daily. I don't notice that he is getting better.

We are still pretty new at this disease & are still learning. I hope you can find the answers you need. We will be thinking of you & prayers are sent your way.

Shirley

well mellywill i am haveing a very long battle since last thanksgiving with my M.G. tag along and my primary v.a. doc not beleiving me when i told her that my chest xray was not normal even though the doc who read it at the v.a. said it was and then on the 31st of dec. the pulomunary doc told me i had penumonia and was inthe hospital for 3 days after 3 rounds of antibiotics so yes i totaly understand and some days it seams like my mestinon just is not doing its job my neuro told me i could go up on my prednisone to 40 mg a day instead of satying on 20mg but so far i am just to stuborn to do it. just hang in there and it will get better is that waht they always tell us/
take care
Chuck

When you are in. Flare, your muscle receptors are not functional either be ause they are clogged with antibodiex or in the case of MuSk + like problems the receptors ate nonfunctional because they are not being produced properly due to antibody attack. Mestinon keeps acrtylcholine messengers hanging arpund longer so they have a better chance of finding a finctional receptor. It won't do much gpod when antibody production is so high there are few receptors to trigger this prednisone, Imuran, cellcept etc.

oh yea
On mestinon only in the beginning and a flare up had me in hospital for weeks. Took a year for new treatments to get me functional. Mestinon alone couldn't keep me alive.

Wanted to get note in despite hour and double vision, so not entirely clear. Mestinon is not like Popeye's spinach! Although at its best, it seems that way. It works by slowing the breakdown of the messenger from the nerve to the muscle receptor. It helps increase the amount of acetylcholine when there is inadequate amount being produced by the nerve as in some types of congenital myasthenia and when extra is needed for muscle function in autoimmune myasthenia. When the muscle receptors are non functional for any reason, it will have no helpful effect.

Then we need other intervention to stop the antibody production that is interfering. Thus the need for immunomodulators and immunosuppressants, etc. Ideally we need a reset button, so our immune system will go back to making only antibodies needed for health, or a way to target only the "bad" cells. Or a better understanding of why they messed up in the first place and try and prevent that. All our drugs are only treating symptoms and even thymectomy hits the good along with the bad. We do the best we can with balancing risk and response--its not safe, but MG isn't either.
Hang in there, b

When I was diagnosed last year, I started on Mestinon 60mg tablets. I was unable to get any kind of consistent results from it. I switched to Mestinon timespan, and got smoother results, although I think I'm the only one on this site that has had this response. Wishing you all the best going forward.

Hi! I was on mestinon for 2yrs. after my two surgeries last winter the mestinon seemed to not work as well and gave me alot more intestinal issues. Since I had intestinal surgeries I did not want to cause more damage. With my neuro's blessings I stopped mestinon completely.

I take only cellcept 1000mg twice a day and I am soooo much better!! Getting more strength. I can walk up to 40 mins at a slower than normal pace, but I can do it!! I have more stamina, planted all my flowers last week!! I can do more activities with the kids I watch, do grocery shopping etc. I don't have to sit and rest as often or as long.

I may be the exception to the rule here. there is hope for aome at least. Also I found an article that found a third cause for MG (and new meds) I will post a new thread on it. Maybe you have this????

When first diagnosed I was taking Mestinon 60mg only. When that didn't work, I switched to Mestinon Timespan 180mg 2 times a day. Big Difference! Using the Timespan Mestinon keeps it at a steady level in your system and you are not as likely to forget a dose when you only take it in the morning and when you go to bed at night. I keep it right on my nightstand so I won't forget.

Timespan is certainly worth a try and I wish I could have sent you mine, I had to dispose of it so I wuldn't be tempted to EVER try it again. Why in me it is metabolized so quickly and levels go so high and drop so precipitously is idiosyncratic and I felt like an idiot after i tried it more than once. Be sure and take it with food which will help spread out the release. The same goes for the regular Mestinon, it will delay the initial release, but last longer. If you need the Mestinon NOW, chewing it will get it into the bloodstream faster. b.

Mellywil ,

I and my thymectomy in 2000 and for a period of time was on mestinon , imuran and the one and only prednisone ha ha . After a few months i was no longer taking mestinon as it was not doing much of anything so it was all about prednisone , imuran and plasmapheresis for me.

As beweeds has stated as if she's talking to me , immunsuppressants are critical hence the imuran and the thought there is it will decrease how much prednisone you will possibly need. Imuran is based on your body weight and often takes a year to start to feel the effects.

Im sorry of your struggles and can certainly relate to , but on the positive side you can look forward to in the near future of med tapering. As profit currently on 3mg of prednisone every other day and no other meds as m tapering will continue down in two more weeks to 2 mg etc.

So there is hope my friend , Don't ever give up ..Cj

I have heard that Mestinon doesn't always work. Also I read that your body can get resistant to Mestinon.....

Good luck!!

Way to break it down bweeds!

Mel's MG sounds like it is progressing. IVIG to make you feel better and start Cellcept was my choice once I was taking too much mestinon. Ouch the cramps I used to get all the time!

Over time Mestinon has become less effective for me. It may be that my MG has gotten much worse, but I think I read early in my diagnostics period that Mestinon was less effective over time. Like B said, having acetylcholine on hand won't help much when there are just too few receptors. That's where I have been at lately. Mestinon works for the 1 hour surrounding its peak for me; the rest of the time I am waiting for it to kick in or waiting to take more. I didn't quite get why it was hard for you to take it. Sorry if you already explained and if I missed it. Sending you hope for health.