I Refused to Let MG Control My Life

I had my first MG symptoms (flare-ups lasting 2-3 months each) in early 2020. It was classified as Late-Onset MG. Immediately I started on Pyridostigmine and prednisone.

I hated how prednisone was relentlessly damaging my body. Finally my neurologist, during another flare-up, prescribed something different: Azathioprine (AKA, Imuran) in May 2024.

By July 2024, the flare-up ended

Based on my liver test results in December 2024, I switched to Mycophenolate mofetil (AKA Cellcept). Imuran and Cellcept are immunosuppressants originally developed as organ-rejection medicines for transplant recipients. I continue to take Cellcept today; originally 2,000 mg daily, and today 1,000 mg daily.

That same July I started weaning off Prednisone (decreasing the dose by 5 mg each month), finally reaching 0 mg in September 2025. I was elated! 5 years of Prednisone had ravaged my body (torn/bruised skin, pre-diabetes, osteoporosis, weight gain, cataracts, high BP, urinary incontinence, anal sphincter weakness, gut microbiome destruction, etc.). I was taking all sorts of drugs to counter the side effects of Prednisone (and many of those drugs had their own side effects!).

Between every flare-up I was in a state of being relatively symptom-free. Medical personnel, I later discovered, like to call that state “MSE” for Minimal Symptom Expression (i.e., a score of 0 or 1 on the MG-ADL), which I had incorrectly thought was full remission.

Since the July 2024 flare-up ended I have been in full remission

So I’m approaching two years of zero symptoms. Was there something I possibly did to reach this symptom-free state? Why, yes, there was!

In late 2023 I decided that, if I could help it, I wasn’t going to let MG continuously control my body. The one thing I could fully control was what I put into my mouth. I spent many weeks learning everything I could about good nutrition.

I created a complete diet, based on my research, that included only fresh, non-processed food (organic whenever possible) and appropriate supplements and minerals. I had my diet’s components reviewed and approved by a licensed Kaiser dietitian. I resisted any cravings I had for junk food (one of the hardest parts of this dieting process).

Almost immediately my body started changing for the better

All the G.I. tract issues disappeared. All the symptoms from Prednisone that I mentioned above disappeared. I stopped all the drugs that I was taking to treat Prednisone’s side effects. Cellcept is now the only prescription drug I currently take, compared to the six I took while on Prednisone.

Even in remission, I continue with the same diet. My body feels so healthy now, minus the normal effects of aging. All the supplements I take for my gut microbiome have made my digestive system, from mouth to anus, pretty much the best it’s ever been in my life. (I wish I had learned all this decades ago.) Because my body is so healthy now, I am convinced it is one of the two reasons I’m in remission (Cellcept being the other reason). MG no longer controls me.

I’m back to living a normal life, and healthier than ever. Fingers crossed!