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@looking2u4more

I am 33 years with MUSK positive Myasthenia gravis...have spent years on low-dose prednisone and ultra low dose pyridostigmine AS NEEDED...had IVIG in January...back at my baseline. Because of diminishing calcium, doctors have suggested decrease in prednisone and start of Cellcept(liquid), I have been on it for 8 days and even with Ranitidine... it is hard to tolerate in my stomach.., AND my head fills Ike an inflated balloon encased in my skull so I take two/ three ibuprofens per day. Today I STOPPED the Cellcept, it’s been debilitating.... between the head pressure and the upset stomach.... I can’t leave my house.... not mention the fact that I am on TWO immune suppressants during cold and flu season.. I am taking 4ml of Cellcept twice a day and alternating prednisone 5/10 mgs a day.

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Replies to "I am 33 years with MUSK positive Myasthenia gravis...have spent years on low-dose prednisone and ultra..."

I am on 2500 mg cellcept and am fortunate I have not experienced your side effects. Often the docs prescribe Immuran when cellcept is not tolerated. Also Ritumab has been successful with MUSK.
Good luck

My prayers to Almighy for your recovery and make life tolerable.HE definitely helps.Just wish to know whether you were on Statins for long time earlier to onset of MG ?

Prayers for your recovery.Om Shanti ie Peace to all.

Hi @looking2u4more and @susiejohn
I would appreciate your sharing your experiences with MuSK positive Myasthenia gravis with Connect members in these discussions:
- Myasthenia Gravis* https://connect.mayoclinic.org/discussion/hi-everyone-let-me-begin-by-telling-you-some-of-my-story/
- Myasthenia gravis (MG) https://connect.mayoclinic.org/discussion/myosthenia-gravis/