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...

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/ Myasthenia Gravis Support Group

IVIG TREATMENTS

alfredsr2
alfredsr2

Hello all.  I have had 6 IVIG treatments and have been on 150mg of Imuran.  I have seen very little improvement.  I also take 5 60mg mestinon and 40 mg of prednsone daily.  My symptoms include hand cramps,difficult breathing,tighteing of the jaw,eye problems.  I need word of encouragement from others in my situaton.  Thanks

xmas25
xmas25
Xthe hand cramps could be mestinon side effect.i have rheum arthritis and i blamed elbow and finger on.had cortisone inj in elbow much better. I take reg mestinon,timed rel mestinon,pred and thats all since everything else didnt work etc. I stopped using tablet so much and surprise!the finger,thumb pain went back to tolerable! Good luck have a great w/e
Rhanson
Rhanson
Sorry to hear you are not progressing well with the MG treatment. Each of us has different responses to the medications, so much of the treatment is somewhat of a trial and error route as the neuro tries to find out what works.
When prednisone started working for me after several months of taking it, Mestinon actually made me worse rather than better, as I didn't need it, and only got the side effects. So you might try not taking it for a day and see if that makes a difference. I got all sorts of cramps from it and actually was quite happy to get off of it, even though it meant taking more prednisone.
Mestinon is very short duration acting, and very quick to work (minutes and hours) so if you skip taking a pill you can take one and 1/2 hour later it will take effect.
Hope things smooth out for you. Persist with pushing your neuro to find solutions as when they don't hear from you they assume you are OK.
Marijke
Marijke
I find that when I get muscle crams, chewing some calcium tablets works (Tums is great for that). Do know however that you can get cramps if your dose of Mestinon is too high. Keep an eye on when they occur, just after you take Mestinon, or after a couple of hours. Good luck with your teratments, IVIG didn't help me either, ended up needing plasma exchange and weeks in hospital. Hopefully you can skip that.