Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
My Mom is newly diagnosed and is finding that Mestinon has side effects that she can't deal with very well. She sees a visiting neurologist and won't see him again until January.
We are wondering if there is another medication that some of you are on?
Right now she is going to stop the medication and deal with the droopy eyelid and the double vision.
Any suggestions would be greatly appreciated!
Thanks in advance for your time!
Goodaughter
sorry about your mom's hesitations
having mg, is not as easy as it sounds, and meds, sometime do not work as one expects.
unfortunatly their is only 2 standart meds for mg, mestidone for mg itseld and prednisone for inflamations and inmune suppressant
both meds as all meds have side effects,and i would suggest that you fallows doctor order untill you mam see him/her in january.
the dise effects of mestidoene and prednisone beetwen all are the least problematic with side effects
i am mg worst classification and under mestiddone and prednisone, just came out of my worst relapse in 8 yrs. and taken mestidone and prednisone,
the side effects are mostly when you tak hi doses for extented period of time.
i just want to enclose i site where you be able to check any and all meds given, look thru it studies the ins and out then make your own decision
this site is the most tourough and honest as follows
www.drugs.com
type the name of the drugs, read the side effexts, and overview then decide what you want to do
best of luck, you are not alone (fighter)
Not a good idea for her to stop taking the medication. At the very least she should talk to the neurologist (office perhaps) and express her concerns. There are some medications that can go some way to alleviate those symptoms. No need to complicate this any further at this stage.
Best Peter
We will check out that site, thanks very much!
My Mom is having a lot of troubles with stomach upsets and diarrhea all night long. she has tried a few over the counter meds to help with those symptoms but they don't always work. She is discouraged and disappointed.
Thanks for your support!
Because I had MG, including double vision, for about twenty years before being diagnosed, I didn't have Mestinon to help me for all those years. The double vision in MG isn't stable, so for safety's sake, I gave up driving. Prismed lenses helped me for a while, but I ended up having to wear an eyepatch nearly all of the time. If your mom ends up wearing an eyepatch, please tell her I said it isn't so bad. Be brave and smile. You can't believe how many kind people will offer their seats on the bus and how many curious children will ask you why you are wearing an eyepatch. (No, although tempting, I don't tell them that I am a pirate.) For me wearing a bit of red lipstick helps a lot. ;-)
As far as the ptosis goes, my drooping eyelids never obscured my vision, so I can't help you with that. But there are ptosis crutches that some people find helpful.
The idea is to take the smallest dose that helps, spaced as far apart as you need. For example, I do best with 120mgs every 4 hours, but my stomach can't handle it (diarrhea). So instead I take 90 mgs
which is the lowest dosage where I see any improvement in my symptoms, and then take 30mgs two hours later -- always with food. Then I usually wait 2 1/2 hours before my next 90 mg dose. Sometimes I can get by without the 30 mg in between doses. We all experiment to determine the best dosage of Mestinon and how far apart to space the doses.
There is a time-release version of Mestinon which could possibly be helpful for your mom.
Mestinon is like aspirin in that it just helps with symptoms, not the underlying problem.
I will help her experiment with the dosage and spacing them.
This forum is so helpful! It gives us hope too!
Thank you for sharing from your experience I know this will encourage my Mom!
As far as her current dosage I don't know the mgs. but she was up to 4 tablets per day. That's when the other side effects got really bad. I like your idea of finding out how much is enough!
- Nan
I had diarrhea, stomach cramps, profuse sweating if I was doing something, and leg cramps at night from it. The first couple of weeks were pretty bad with the side effects.
I learned to always take my mestinon with some food -- maybe just breakfast bar or few crackers,
I took 2 over the counter Immodium (I took the generic loperimide from Walmart) every morning when I got up
I spaced out my dose sometimes taking half a pill at a time twice as often
I did not take it in the later afternoon or evening --figured I didn't need it when I wasn't doing anything and it gave me leg cramps at night. I did calf stretching at night too.
I was glad when prednisone got rid of my need for so much mestinon! I was taking about 6-8 pills from 6am to 5 pm to be able to function. It never got rid of my double vision, but made it so I would walk, do some work, breath while active and sort of live and do stuff. So I figured it was worth the side effects. And, after a few weeks of taking it the side effects were less or I got used to them. Without Mestinon I would have probably just sat and worried rather than continued with life.
I knew that if I took enough prednisone for long enough MG would be controlled and so my view of mestinon was that I would put up with it but get on with the real treatment needed to get this under control. Took about 4-5 months of prednisone, and then I needed only a little mestinon and eventually none.
Finally, some folks have suggested a drug called Huperzine A that is supposed to work like Mestinon without so many side effects. I have never tried it so don't really know about it, but you could ask your MD to see what they thought.
good luck
Russ
Monica
what the Neurologist has prescribed for your mom. But also,
ask the Neurologist about Rituxin.
Good Luck! Dave (2Bcool)
I don’t think they will give your mom rituxan or even imuran with ptosis double vision symptoms reserved for moderate to severe cases. . Mestinon has the least bad side effects. There isn’t a whole lot of meds for MG that dont have serious side effects. I’d say stick with mestinon unless symptoms worsen.
When I was first diagnosed doc gave me some mestinon to try and I did the taper and didn’t get bad stomach upset but then switched to more experienced neuro who gave me an EMG which was negative so I didn’t get any more meds.