Cellcept and Myasthenia

[mary-hudak-collins]

Ashley,

When I was first diagnosed, it was for MG.  I didn’t tolerate Mestinon so I was then placed on Prednisone with minimal relief.  My neuro added Cellcept 500 mg each day, gradually increasing to 2000 mg.  When I reached 1500 mg/day, I couldn’t tolerate (severe nausea and dizziness)  it so we backed down to 1000 mg.  Once we knew that I would be adding Firdapse to my regimen, we weaned off the Prednisone.

I take the Cellcept in the morning and evening now along with Firdapse every 4 hrs round the clock.  I can tell a significant difference between when I take the two together and when I’m only taking the Firdapse.  I do much better with both of them and wish I could take more of the Cellcept.  I wouldn’t be searching for something else to add to my regimen to decrease my symptoms (limitations).

As the article stated, blood tests are needed to make sure blood counts don’t drop and mine have always come back normal.  My neuro advised me to stay out of the sun without a good sunscreen because the Cellcept made me prone to skin cancers.  But, anyone with LEMS knows that you probably aren’t going to do well going out for a day in the sun/heat anyway 🙂

For me, Cellcept gives me several hours of “good” so the risks are worth it to me but each person who is presented with the option of that medicine has to make that decision for him/herself.

[ashley-gregory]

Hey @mhudakcollins

Thanks for sharing your experience with Cellcept with the group!

I’m so glad that Cellcept works well for you! Thanks for reminding us about the adverse effects related to sun exposure and the blood tests! Those are great tips!