Are you taking the name-brand or generic? It "might" make a difference. They may be using different binders -- the inactive ingredients that "hold" the medicine into the pill form.

Some MGers can only take the syrup form. You might ask if you can try.

Mestinon doesn't work for everyone -- BUT, you DO want to see if you CAN get it to work for you. Even with the somewhat bothersome side effects (that DO tend to subside with time), it is the LEAST damaging of the treatments, in my opinion.

Prednisone "might" help -- but, it can do some major damage to other body systems. It is the "good, bad" drug. Osteoporosis, diabetes, cataracts -- just to name a few of the likely side effects.

Cellcept, Immuran, Sandimmune -- other immune suppressants -- all carry the "possibilities" of cancer or organ damage or...........and there is no guarantee that they will even work!!

Plasmapheresis and IVIG carry their own risks........but, you may eventually need these anyway.

In short, Mestinon can be "uncomfortable" in the beginning -- HECK, it is a pain in the BUTT -- literally!!! You spend a LOT of time in the POTTY, at first!! But, if you can make a go of it, compared to the OTHER treatments, it really is not so bad.

Sorry to be so blunt, DeliaDee. The opinions expressed here are MY OWN -- and may or may not be the same as ALL other MGers. We are "snowflakes" -- different symptoms -- different reactions to meds -- and different approaches to the disorder we call "the beast".

If that puffiness of the lips and tongues continue, you need to get some help! Some drug stores deliver, as do some grocery stores. PLEASE don't wait. I went from your symptoms to full blown severe allergic reaction with hives from head to toe and an inability to breathe many years ago. It's dangerous!!! I hope you'll be okay.

Someone can have a side effect of Mestinon like increased sweating, saliva, etc. You can have overdose symptoms, which it sounds like you may be having, that include increased weakness (and paralysis). Or you can have an allergic reaction to Mestinon, which you may be having too.

When they gave Mestinon to the Gulf War vets, they could not tolerate Mestinon (to keep Sarin gas out of the neuromuscular junction). Why? Because they have a normal amount of acetylcholine. Anyone with a normal amount of acetylcholine would have that reaction. No amount of food taken with it will stop those symptoms. You have to wait until the drug wears off. Or take Benadryl.

And neurologists (I saw your post below, Sue) don't often read all the info about drugs. They can't be bothered.

Sorry guys, but I'm being a downer again. DeliaDee has to have a definitive diagnosis before she even thinks about all these drugs and she hasn't gotten that yet.

Hi DeliaDee,

welcome to the Neuro Talk,

Whew, I checked in yesterday and there was 2 posts I think, then my computer shut down!!!!
I have read, or tried to read all the post here, my brains in a bit of a " I don't feel like concentrating thanks very much" kind of mood, so I might have missed what Iam about to post about.

Has anyone said anything about taking mestinon with food, if I take it on an empty stomach I get very very sick. All the dr's and nurses insist it be taken on an empty stomach, I guess they've never taken it.

Even if is with a small amount of food, just to line the stomach, it helps.

Like I said, I hope I havn't made an idiot of myself, and just repeated what someone has already said!!!
Kate

Kate,
My instructions from pharmacy says to take Mestinon with food to prevent stomach upset. Neuro never said one way or the other. Crazy for such opposite info on same drug.
Sue

Hi
 

There is a thread on the MGA forum here in the UK where someone is experiencing symptoms of an allergic reaction to Mestinon.

They have a rash when they take the mestinon and some people find that they can't tolerate it due to the allergic reaction and not the side effects.

Allergic reaction - swelling of mouth, lips and tongue etc, skin rash

Side effects (although they can be horribly severe) - nausea, vommiting, the runs, stomach cramps, drooling (I've had all these! LOL)

The ingredient that people tend to be allergic to is the BROMIDE.

I would contact your Dr if your mouth/ lips have swelled its not a good sign and your next reaction could be more severe.

Good luck

Love
Rach

Thank you. This makes sense. A few people here have suggested it might be an allergic reaction. After I read your post, I looked up bromide and it does seem like this might be the problem. I had the nausea, runs, cramps, and drooling but what really bothered and scared me was the swelling. Especially combined with the drooling - it felt like I was going to drown in my own drool (and I'm not even a rock star from the 70s!). :cool: My doctor and I need to have a lo-o-o-o-ng talk about all of this.

symptom confusion and the need for a timely fix
 

Delia Dee,
I had alot of these same side effects when I first started the Mestinon. The excessive drooling was the worst! I had days where I literaly vomited from all the saliva. I never have had any of the swelling though which I know is your main concern. I still can't tolerate much Mestinon without it making me weaker than the MG does untreated and it didn't do much to help my droopy eyelid. I have been on Pred for several months now and that controls the eyelid droop but has major side effects. I am in the process of tapering off of it. It is important to eat something when you take the mestinon even if it is just a couple of crackers. Desert Flower told me when I was having so many problems to drink plenty of water and that has also helped tremendously. I don't take any Mestinon until I feel I need it. Some days my first dose is around 7:00 or 8:00 am and other days it is noon. I have found that if I take it when I don't feel like I need it my weakness becomes so much worse. I hope you get some answers soon. I remember how frustrating it was when I first started the Mestinon. I had such high hopes but never really got the results I expected. It truly is a medication that has to be adjusted to what works best for you. My Neuro told me to play around with the dose until I found what worked best for me. You can try smaller doses more often or simply as needed. Hang in there it does take time for the body to adjust to any new medication.
Kendra

About Mestinon,

I love Mestinon even with all the side effects, which I have slowly learned to either live with or minimize. Without Mestinon I am pretty much bedridden...

I can't tolerate Mestinon on an empty stomache, because this seems to quickly bring on the side effects (drooling, diarrhea, twitching, nervousness, cramping, etc). But if I eat a little first and then drink a BIG glass of water afterwards, I tolerate it pretty well. I do have to drink extra water all day as well to keep the side effects tolerable.

I don't have an allergic reaction to Mestinon which is serious and needs immediate attention as Annie said earlier. I worry about becoming allergic to it, since I seem to easily get allergic to medicines, but ok so far.

:hug: