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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.

            • #19198
              Charles Karcher

                Spoke to an Alexion rep yesterday.  I am on Medicare and she said they had already successfully authorized a few patients.  She was going to work on my case.  She said it was unlikely I could switch over for my next Soliris infusion(05/28) but was possible for the infusion after that.  I have some trepidation making the switch because Soliris has worked very well for me.  I do look forward to going to an 8 week schedule.  I have very good veins but avoiding a port is one of my goals in switching.

              • #19206
                Dave Mattenley

                  I also spoke to my Neurologist and will be going on Ultomiris very soon. I have been on Soliris for 6 months. Looking forward to every 8 week infusions. Let us all know if it works better than Soliris for you. Or did everything stay the same . Or worse. Thanks Dave M

                • #20326

                  Who has had any results from Ultomiris infusion ? Any results ?  my husband has had 3 infusions since 9/08/22 . No real results yet .

                  • #20864
                    Greg Josephs

                      After being diagnosed in 2002, I was on 2400 mg of Cellcept daily for 18 years (good Lord, that’s 50,000 pills!) but I switched to Soliris 2/2021 until 12/2022, then greeted the New Year with Ultomiris!

                      I had my third dose last week. No real change.
                      Now it took Soliris 6 months to have a positive effect.

                  • #20860
                    Paul H Conrad

                      Had my first dose of ULTOMIRIS


                      Will let everyone know if it helps. Hopefully I will not get MENINGOCOCCAL Infection

                    • #20861


                      • #20871
                        Craig Whitney

                          Four months after my diagnosis with gMG in August of 2022, taking Prednisone, Mestinon, and Mycophenolate was not enough to keep my symptoms at bay. In early December, my neurologist ordered 5 plasmapheresis treatments in hospital, and that helped me feel much, much better. In January of 2023, I began Ultomiris infusions. Two infusions, two weeks apart, but with no difference in symptoms afterwards. Eight weeks later, I was feeling really terrible and desperate for a positive change when I went in for the next infusion. The two-to-three days immediately after that Ultomiris treatment, my symptoms were SO much improved. The following week, right now, that improvement seems to be fading a bit. But I remain feeling better than before the first two infusions. I’m fortunate to have Medicare and a supplemental policy that cover 100% of the Part A and Part B costs, so getting clearance in advance was not a problem. But the cost of the treatments in January (the amount of Ultomiris prescribed is based in part on patient weight, I’m a big guy) was over $500K. If the next infusion in May  brings improvement, I will be so grateful.

                          Hope this info helps somebody else. My old brain doesn’t work as reliably as before gMG and the many and varied side effects of the drugs I am taking. But let me know if you have a question, perhaps I might be of some assistance. Best wishes to all.

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