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    • #19510
      Patsy Bobb
      Participant

      My neurologist advised me that I was not a candidate for the new treatment Vyvgart. He said that I would have to get IVIG or Plasmapheresis.  I have taken IVIG in the past, so I will go with taking IVIG.

    • #19511
      Kelly Criezis
      Participant

      Hi I am curious if you could share while you were not a candidate. This would be interesting to know in case my husband might need it in the future. Thanks and good luck!

    • #19516
      Marguerite Thibeau
      Participant

      I am currently on  Vyvgart, and doing great. My doctor said that patients that have a  positive reaction to Plasmapherisis tend to do well on Vyvgart. This has been true for me.  I too am curious why he felt it’s not a good match.

      Insurances can play a role in what Meds we can access. Some want other drugs tried before certain treatments.  I had done great on Soliris for several years, then it wasn’t enough. Vyvgart wasn’t approved yet, then there were no infusion centers certified for it. I’m infusing at home and loving that it’s only 2 hours for a month, then nothing until I need another boost in a month or two. Traveling to an infusion center added 4-6 hours to the actual infusion time, so I’m feeling very spoiled.

       

       

    • #19524
      Catherine Mahler
      Participant

      <p style=”text-align: left;”>I understand to be a candidate for Vyvgart, you must be Seropositive. I am Seronegative.</p>

      • #19533
        Annemarie P
        Participant

        I hope the FDA is working on allowing us Seronegative patients access to the new drugs.  It is not fair that we have all the same symptoms.  I am getting off long term {1 yr} high dose,[100mg now down to every other day 20mg] Prednisone, Mestinon doesn’t work for me any more, on 2500 mg Cellcept daily.  I have Ptosis, blurry vision later in the day and muscle weakness after short term activity.  It  appears after a year, the Cellcept isn’t helping me much.

        Please, we seronegative patients need help too!

    • #19527
      Kelly Criezis
      Participant

      Oh I see thank you so much for the clarification and bless you I hope you find some relief

    • #19539
      Gary Lidiak
      Participant

      What was the specific reason you were given that you were not a candidate? I am using it and it is a miracle drug for me. However, that’s why they call MG the “Snowflake Disease”. You never know.

      • #19541
        Annemarie P
        Participant

        I am Seronegative.  My symptoms are the same as yours, but you are probably Seropositive.

    • #19543
      Annemarie P
      Participant

      I am assuming my team will probably put me on IVIG treatments too. Being Seronegative throws a wrench into most common treatments for MG

    • #19546
      Patsy Bobb
      Participant

      Yes, my neurologist said he went all the back to when I was first diagnosed with Myasthenia Gravis. I am Seronegative, not Seropositive. For now I chose to have IVIG, because this double vision comes to me frequent.

    • #19548
      luz d sharpe
      Participant

      I am seronegative and I just finished my first cycle of vyvgart yesterday. I have tried ivig and plasmapheresis and have had serious anaphylactic reactions to both. I have been in a cycle of flare ups/exacerbation/crisis since my diagnosis in March of 2019. I have been intubated eight times!!! I have been on high doses of prednisone since the beginning along with Azathioprine. I am truly amazed how much better I am feeling. Our goal (my doctor and I) is to get a month maybe a month and a half before having to do another 4 infusion cycle. ( I have tried both Mestonin and cellcept and my body couldn’t handle either. ). We did have to jump through hoops with my insurance company, but in the end the did approve it. Hopefully my body will continue to accept it and respond well to it. Hang in there my seronegative friends!!! Hopefully soon it will be approved for us!

      • #19552
        Annemarie P
        Participant

        Wow, I am so happy you are doing well on Vvgart. There is hope for us Seronegative people.

        • #19553
          luz d sharpe
          Participant

          Thank you! Yes there is hope!!! Hopefully it will be available to all seronegative mg patients that are struggling with lack of positive treatments!

    • #19572
      Joe B
      Participant

      Not exactly the topic but…i was on 60 MG of Prednisone and i take a 60 MG Mestinone every 4 hours. Developed diverticulitis and Dr needed to get me off the steroids so went to an IVIG every three weeks. I was able to get of Prednisone fully adter 4 months. My insurance has denied every infusion and the bills are stacking up. Our Dr has sent in appeals to no avail. I have a good insurance but they say there are other methods to treat my disease. Any suggestions would be appreciated.

      • #19573
        luz d sharpe
        Participant

        Have you tried cellcept? Azathioprine? Low doses of prednisone? Has your insurance company made any suggestions, since they are denying your infusions? Are you seronpositive or seronegative?

        • #19580
          Joe B
          Participant

          Thank you, so simple that i have not challeged the insurance to provide an option. Cellcept and Azathioprine arent good options due to my diverticulitis and my high risk for infection. Most other IV treatments seem to be more than my IVIG so its surprising they are being so tough.

        • #19581
          luz d sharpe
          Participant

          I’m very surprised they have denied the ivig…usually that’s the go to when oral medications are not an option. I would reach out and see what their “other options” are. Fingers crossed that you and your doctor find something that works…I understand your frustrations. Hang in there.

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