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What was the first treatment your doctor prescribed for MG?

Tell us how it worked for you. Did treatment help reduce symptoms? Did it bring any unexpected side effects? Your insight can provide valuable perspectives for other navigating similar journeys.

  1. When I was first diagnosed, I received a 5 day course of IVIG. I would also take Pyridostigmine 3x daily and Neostigmine 3x daily.

    Now, I get IVIG every 3 weeks, Rituxan every 6 months, and Mestinon 4x daily.

    1. For me, a 5 day round of IVIG followed by prednisone (I think it was 60mg a day), mestinon (I forget exactly how much I was taking per day), and CellCept (2000mg/day). Got my symptoms under control to where I stopped the mestinon 8 months later, had a thymectomy 11 months after my first crisis and diagnosis. Since then I weaned off the other meds one by one over the next 3 years after my thymectomy and just last month finished the weaning period of CellCept. So far no flare of symptoms 😀

      1. Upon diagnosis of MG, my PCP prescribed 20 mg per day of prednisone until I could see a neurologist. It actually made my muscle weakness worse, to the point of having to go the the ER because I could barely walk. After consultation with a neurologist (telemed in ER), I was immediately hospitalized for three days of IVIG infusions. While in hospital, my neurologist put me on pyridostigmine as well as continuing the prednisone. I was much better when released from the hospital. Prednisone often has that effect on MG before it works positively to control the MG.

        1. We appreciate you taking the time to share your experience! How have your symptoms been recently?
          -Jodi, Team Member

        2. It complicated! (Isn't MG always?) I was doing reasonably well, so, in consultation with my neurology PA, I decided to try weaning off prednisone. That did not work and now I'm trying to get stabilized again.

      2. Prednisone

        1. Hello we appreciate you taking the time join the conversation. Have you found the protocol to be helpful providing some relief from symptoms? I hope so. Wishing you well. -Jessica, Team Member

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