Forum Replies Created

  • Jane Renkiewicz

    Member
    March 8, 2024 at 6:38 pm in reply to: Do you have MuSK MG/MG-causing antibodies? Which treatment works best for you?

    I do and my second flare up in 2019 we did 2 rounds of rituxab and now am on azathiropine and have been symptom free for 3 -4 years. We are slowly now weaning off of azithiropine.

  • Jane Renkiewicz

    Member
    December 24, 2022 at 11:28 am in reply to: Anyone with experience with Rituximab infusions?

    I have 20 years ago with a return 3 years ago.  I have Musk MG and all meds- steroids,Mestinon, IVIG did not touch it.  After 2 rounds of Rituxab(6months apart) , I have been almost symptom free. I have been that way now for 2 1/2 years.  I only take azothiropine but hoping to be weaned off of that this summer.  It was a miracle drug for me.

  • Jane Renkiewicz

    Member
    December 18, 2021 at 2:57 am in reply to: Mayo Clinic, Johns-Hopkins, Cleveland Clinic type centers; experiences/advice?

    I am fortunate and have had a great neurologists in Cincinnati but when my MG was at its worse, I went to Cleveland Clinic.  Dr. Kuensler and team came up with a new treatment plan and I’m symptom free.  I do have both the Musk MG and the general MG with weakness and fatigue in arms and legs.   Would highly recommend and get a complete work up.

    Jane R

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