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    • #19953
      Mark Nafe
      Participant

      <p style=”text-align: center;”>So am curious if anyone knows which is worse for your body – long term steroid use of about 10mg a day or having the immune response constantly attacking your nerves?  Is there a benefit for one over the other?  Debating which I would prefer long term…</p>

    • #19955
      David S
      Participant

      Good question.

    • #19989
      Marguerite Thibeau
      Participant

      I don’t tolerate many drugs so I’m not a fan of prednisone for me. It’s an important tool for MG, and has helped many.  But those of us who didn’t do well on it are more likely to reply. My Dexa Scan showed increased bone loss, and my teeth had increased problems. I regret taking it. Women have more of a problem with bone loss. And I feel my brain function changed.

      Surviving is our goal, so there is that. Here is a recent study on it. I have  young family members being put on it and have real concerns, so this article didn’t help remove my worry.  You’ll have to discuss options with your doctor. It’s been the standard of care and is frequently used. https://www.medicalnewstoday.com/articles/prescription-steroids-affect-brain-structure-study-finds

       

    • #20022
      Alan Bridle
      Participant

      I guess the answer will – like most things about MG – vary from person to person, but my goal is to get my long term prednisone dose slowly down to the lowest at which I can tolerate my MG symptoms.   It will be great if that turns out to be zero but I suspect 5 mg/day may be more realistic.  I am currently on 10 mg/day and about to go down to 7.5 mg/day.

    • #20053
      Claire M Walsh
      Participant

      I am on 5 mg a day, needed to stop Cellcept completely due to side effects. Have had 2 rounds of Vyvgart. First showed no improvement but the second round did ( 4 infusions, 1 per week). Have you tried that? I was on immunoglobulin infusions twice monthly for over a year until starting Vyvgart. Snowflake disease, everybody is different 😱

       

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