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...
Hi! I am frustrarated & si k of docs, but my ?'s are has anyone's mestinon seemed to not do what it used to & MG seems to be worse along w/ the flares also. Wondering if I can take cellcept when I ca nnot take medrall nor prednisone!? Has anyone found t for some unknown reason harder to take your mestinon while in a bad flare when you need it most! Has anyone had stories of MG where its not just a worse day or bad flair but MG has jumped to a new level of bad all the way around? Thx for any &all responses are welcome ! Thx MeLisa
I tend to get complacent with my dose of mestinon at times and underdose. I know to increase it for activity and for antibiotics and pain meds but my bodies needs change in subtle ways and at times I don't recognize I need more. I take Timespan at 7 AM and 7 PM. Right now I need 60 mg of the faster acting at 7, again at 1pm and at 7 pm. I was not taking the 1 pm dose and started having problems with not being able to smile and more difficulty getting up from a chair. I am doing better since I iadded the afternoon dose.
I have had the blood clots in the background and I had been doing better before that and just got used to the BID 60 mg. Not sure why it took so long for me to add this dose in again.
There are some that never do well on mestinon. I was one who had a huge positive change once at first dose. It was like someone flipped on a light switch, For me it has been a miracle drug.
Since I am still not officially diagnosed I can't relate it to receptors being too few or having my body attack on certain antibodies. It may be I have a different sort of process but in some way it magically gives me enough acetylcholine to function.
My problem of late is an undo amount of talking, like in my university interview can render my voice nil.....and any sustained activity will drain away what the mestinon over time. I am celebrating the fact that with the new dose of mestinon in the afternoon I have been able to garden from an hour to two hours again in early morning. I think that also means I am winning the battle against the blood clots....Down to 2L of oxygen in the daytime too! Again, I underdosed. That extra dose of mestinon added in has given me new time in the garden.
Until someone offers me cellcept or some such to try I won't know if that can help me or not. Prednisone helps some but has too many side effects and I can only take 10 mg.
Remember we are all snowflakes. Sharing our stories gives us the ability to see how many variations there are in causes of muscle weakness and in treating it. When in doubt I add more mestinon.
I have been surprised more then once when i was on too low a dose and it helped. Others here who have had the opposite happen have offered very clear ways other treatments work better for them or added in tandem. This is certainly a condition that requires inquiry and adaption.
Hope you are able with your doctors to find what works for you.
Hugs, Marie