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myasthenia gravis

tams644
tams644 Posts: 73 Member
edited December 2024 in Introduce Yourself
Anybody out there dealing with autoimmune diseases

Replies

  • BoltzDaMeek
    BoltzDaMeek Posts: 3 Member
    Hi I also have Myasthenia Gravis and I'm trying to lose 40 pounds I gained from prednisone
  • Shrinkydinking
    Shrinkydinking Posts: 31 Member
    I know this an old thread but I have Myasthenia Gravis also. Just diagnosed. I tried Mestinon for a month with no change and as of this morning I'm on prednisone every other day.
  • g2renew
    g2renew Posts: 155 Member
    Hi there! I am a 'snowflake', too! Dx last November and this summer was a hard time-pre-crises, no intubation. But have been improving since starting CellCept. Took about 6 months plus to notice real difference, but have had about 6 weeks at a time where I am close to stable. Mestinon-180 time release and prednisone 2 short sessions of low dose when I needed something extra to pull me out of a flare. Dreading this flu season. Not going to gym or pool, but trying to eat clean and lean for awhile. May add steps gradually with light weights if I am not going thru too much. Doing a move and work is sometimes a bear (medical field.), so I watch myself a little more ----ok a LOT more!---closely than before. How are you doing? The first year seems to be tough, but then things start getting more stable.
  • Shrinkydink1977
    Shrinkydink1977 Posts: 197 Member
    I just started cellcept and just had my thymus removed 5/22. I'm hoping to get off prednisone. I still take it every other day (20 mg) and mestinon. Cellcept I have been on for about 2 months now. Hoping that helps. I just signed up for BeachBody. Going to quit the gym because I never get there and I can't do weights most days anyway. Plus...corona.. I'm trying low carb diet trying to get some of this weight off me. Any other suggestions?
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