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    • #19119
      Jodi Enders

      The FDA has just approved Ultomiris (Ravulizumab-Cwvz). It is effective for adults diagnosed with generalized myasthenia gravis (gMG) who are anti-acetylcholine receptor (AChR) antibody-positive.

      What are your thoughts? Will you be reaching out to your doctor or mentioning if this treatment could be possible for you at your next appointment?

    • #19129
      Charles Karcher

      I am on Soliris.  Saw my neurologist’s NP last week and mentioned Ultomiris.  I also have reached out to my Alexion Onesource rep to get things moving forward for the switch.  Not familiar with the path from FDA approval to Medicare approval.

    • #19141
      Liane Martin

      My dr just recommended it to me, as I am no longer Seronegative. So, hoping my insurance company approves

    • #19172
      Liane Martin

      I saw my dr on Monday. I am now AChR modulating receptor positive. He is very excited for me to start Ultomirus. I have filled out paperwork, and have gotten my first Meningitis vaccine appointment next Thursday. IVIG seems to have little or no effect for me any more. It was working great for a year, but now, not much. Prednisone seems to be the only thing that kind of works now. I probably won’t start until July, maybe August, so crossing my fingers it will be the one for me….the last few months have been very hard.

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