Need Advice
 

Hi all - I need to take advantage of your collective wisdom and experience. Years ago, I was on Mestinon. It worked well for me - as long as I was in the bathroom. It was awful. It made my gut spasm and it wasn't pretty. After a rather embarrassing "accident" I gave up on Mestinon. [Fast forward 3 years] I have now been on steroids, Imuran, Cellcept, had IVIG and Plasma Pheresis and nothing is working. I'm so sick I can barely function. So I started looking online for drugs that I would take with Mestinon to mitigate the affect it has on my gut. I came up with several: Bentyl, Lomotil, Propantheline, Lubiprostone and Questran. I was hopeful one of those would work and allow me to try Mestinon again. I saw my Neuro yesterday and he said that I could not take ANY of those drugs because they are all contra-indicated for MG.

I really need to find a way to try Mestinon again. Do any of you have any suggestions for dealing with the gastric side effects of this drug?

Desperate for answers. Martha:confused:

hi
 

I have problems with mestinon to. Its gives me a diarrohea and nausea. Along with stomach cramps. I take propanthaline 15mg, one to two tablets everytime I have mestinon. Other wise the bowel spasms feel like I have a knife ripping through me. I take loperimide (immodium) to stop the diarrohea.

I believe propanthaline in contr -indicated for MG, but most people I know cope fine with it. You can't be expected to endure what your going through with the mestinon.

Even though I have been taking mestinon for nearly 2 years I still have days despite taking loperimide and propanthaline, that Im either running to the toilet or have hideous cramps. I never know what kind of day Im going to have. Its always worst when I haven't taken mestinon for a couple of days and then re-start it.

Sorry you are having such a tough time.
Love
Rach

I'm sorry but I don't have problems with Mestinon and GI issues; probably because I don't have stomach acid.

I take Mestinon Syrup. It's cumbersome because the bottles are so big but I don't go out much and have it in a small bottle when I do. What I like about it is that it absorbs more quickly because it's a liquid and I can titrate the doses for how I'm doing (down or up, according to what my neuro has said).

I wish I had more info for you. I hope something will help you soon. It must be scary to have gone through all that and still not be doing well.

Annie

I to take propanthanline.
My wonderful pharmacist picked up it was contraindicated for MG!!!
Thankfully it has no adverse affects on me at all.
It really is sooo unfortunate that mestinon makes our muscles work, but leaves us having to stay inside close to the toilet!!!!
Kate

Too new for help... but I'll try
 

Im pretty new to the site and new to MG. I had horrible bouts with Mestinon when I first started taking it. Oddly enough, a glass of apple juice is the only thing that has worked and I have one each time I have to take it. Something on my stomach as made it much better.

Missgomes
We all have our tips & tricks, anything that works is a good thing !
Mestinon has always made me cramp & loose, horrible ! But the positives out weight the negitives for sure.

Hey Martha,

I too suffer with the same side effects especially by the third day. When you last took Mestinon did you try taking Immodium for the diarrhea? That really helps me. Also, did you always take it with food...not just a cracker, but after a meal? This also helps me. I hope you are able to tolorate it better now so you can start feeling better. I know too well what it's like when other meds don't work or you can't take them. Take care.;)

Hugs,
Pat

Pat
Thats what my neuro recommends also immodium, but I find I live on the stuff, just doesn't end ! They should send us MGers coupons, as we keep them in business !

Or some stocks in the company!

I feel for you, that is one of the reasons I can't take mestinon, I could never leave the house and the cramping and bathroom runs would make me so weak I sometimes couldn't make it to the restroom. MG is just so hard to figure out, and although I am doing better than some on here I get ticked that I can't do much but if I take the meds it gets worse.

I hope you can find some med to help you with the stomach problems.