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...
I am taking pyirdostigmine bromine 60mg 3 times a day (roughly every five hours). I notice i get headaches after about an hour. My eyes hurt from straining to see correct as well. I use an eye patch. I also have stomach problems now,incontinence which i think is from the MG. Boy this is no fun. Does anyone else get headaches? How long before these drugs take effect . I do notice a improvement already but my double vision is not gone. I start mycophenolate tomorrow, can anyone tell me the side effects from that? I realize we all react different to these drugs. I just need a heads up..thanks
I see a MD on the 8th but these questions weigh heavy on me because no one has told me what to expect,just that i have MG,come back in 3 months. That was my Neuro doctor..shrug
Take this with a large pinch of salt. I'd never heard of mycophenolate being associated with MG. So, I Googled it
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2646649/
I have generalised MG and have done so from the start so that probably explains my ignorance as it would seem to have been the medication of choice for ocular MG. That said there's enough information in that paper to give a couple of good questions to ask on your next visit.
Feeling guilty now as I have heard of Cellcept! This is perhaps easier to read, but perhaps little biased as it comes from users, not scientists.
https://www.drugs.com/comments/mycophenolate-mofetil/for-myasthenia-gravis.html
Mestinon (pyridostigmine) works about like an aspirin -- you take it, half hour later it helps, and then in a few hours it is gone. There is no long term benefit it just helps us get through the next few hours. If you get headaches from it, try half a pill twice as often.
Mestinon causes lots of digestive upset and diarrhea. My doctor suggested I take Imodium (loperimide) == two pills each morning and then to always eat something when I took a pill -- I ate a few crackers or something. After a few weeks, I got used to it and it wasn't so bad. It also caused bad leg cramps so I quit taking it about 6 pm and did calf stretches at night. Mestinon, at large doses (60mg every few hours) made it so I could function while waiting for my immune suppressing medicine, predinsone, to work. I took up to 8 per day.
Since MG is caused by our immune system making bad antibodies that attack our own body, the long term treatment is to slow our immune system. Cellcept, Imuran and Prednisone are commonly used ones. I started with prednisone as it gets to work in a few months or so whereas the others can take up to a year. Long term the others probably have less side effects.
What we have to understand is that MG will probably be with us the rest of our life and so we will have to take immune suppressing medicine the rest of our lives. Generally it takes us a year or two so to get the right medicine balance. I think the first year is worst.
Our medicines all have problems. However in the "good old days" before the current meds about 40% of us with MG died in the first couple of years. Now we just have to live with medication and its side effects, but they do push MG symptoms away.
Good Luck
Russ
I used hand wipes and sanitizer a lot of time in public places and was a less likely to go into ;large crowds, and not so hands on with grandchildren in school. I think the worst place is in the clinic waiting room and doctor's office -- so used their hand sanitizer, as I did at the grocery store etc.
The process in MG treatment is to first get it under control by somewhat over suppressing our immune system, and then tapering off very gradually to determine the lowest effective dose. With most of the immune suppression meds that can take a year or more to figure out.
Most folks with MG do get that balance figured out and do live reasonably active and decent lives. However it takes time and one has to be an active participant in the process -- trying to learn as much as possible and trying to know how our body is doing. Our doctors only really know how we are doing by asking us, and so we have to know how we are doing.
We should be aiming for a return to normal life. And to do that we have to try to make our medications work and live with some side effects so that MG doesn't take over. I much preferred the side effects of medicine to MG.
I don't think our medications have hair loss side effects, but don't know what you are taking.
Good Luck
Russ
ould do 2 things that i have allways been ken, as they are very important for control of med
1) cehck allways meds given with the following site to avoid problems with meds interaction
drugs.com /side effects/overview
2) i have learn not to take mestdone in the same time that i take other meds. since i have learn the hard way that mestidone as the nasty habit to play on mg.
i allway give about 1 hr. before take all others
hope that will help some
best of luck
After 10.5 months on Cellcept, I developed gastric issues (details provided upon request ;-) ) and was changed to azathioprine/Imuran. Both Cellcept and Imuran are commonly used for MG. I prefer the side effect profile of mycophenolate/Cellcept, and although it ultimately didn't work out for me, I was glad to have tried it first and was delighted that my insurance covered most of the price.
Unlike fighter, I do take other medications with pyridostigmine, no problem. But again, it is best to take the Mestinon/ pyridostimine with food.
With the the medications and plasmapheresis helping, my double vision is all over the place these days, and I do sometimes have an eyestrain type eye-headache. If the double vision is just a couple diopters and moving around, I often go without an eyepatch for a while because I want my eye muscles to try to become accustomed to single vision. When it starts to bother me, I just wear the eyepatch again. I am happy to report that one day last week my vision was so st
......one day last week my vision was so single and stable that I felt as if it would be safe for me to drive again. I haven't driven in over 20 years.