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    • #19731
      Alice Ulrich
      Participant

      My husband was finally diagnosed with MG in 2017 after several years of trying to figure it out.   He had tried multiple treatments including Plasmapherisis, IViG (had to be stopped because of reactions) then Chemo (had to Be stopped because too sick and liver functions). Now on 3rd treatment of Vyvgart with no change whatsoever.

      Question, he is seronegative and has multiple other diseases.   Anyone else in the same boat? We are completely frustrated.

      thanks very much.

    • #19739
      David S
      Participant

      I am sorry that your treatment road has been so rough.

      I think many of us have multiple disorders.  I am seronepositive.  It seems like seronnegative people also have increased treatment challenges.

      My Neuro started treating my gMG once diagnosed.  He stated that I probably have other disorders, but stated that the treatments are usually the same.  Prednisdone and Mestinon are usually Core medications then an immunosuppressant, such as CellCept or Imuran is often added.  Some also have IVIGs and or Plasmapheresis.

      Fer me, I use Prednisdone, Mestinon, Imuran and monthly IVIGs.

      Have you sought a second opinion?  Sometime different Dr.s use different treatment combinations.

      Hope things get better for you and your Hubby.

      Scott

    • #19745
      Alice Ulrich
      Participant

      Thank you for the response

      he started having symptoms in 2009 but wasn’t diagnosed until 2017.  He has tried all that you have mentioned.  Some he had major reactions.   He did Plasmapherisis with no change.   He did IViG with some improvement but he started having major reactions so the doctor stopped.   After that he tried Chemo but had to stop because of high liver functions.  He is on he’s 4th dose of Vyvgart with no change.

      we actually went to Mayo a few years ago and that doctor gave our doctor high marks do we decided to stay.

      just wondered if anyone out there 1) caught the disease late in the process 2) tried all medicines. 3) seronegative and trying Vyvgart

      Thanks for any input anyone can share

       

       

    • #19754
      Leigh
      Participant

      I am curious how he is able to take vyvgart if he is seronegative. It is not approved for that diagnosis & I was told insurance would not approve.

      I don’t know what other medical diagnosis he has but being seronegative myself, Not a lot of treatments work & there aren’t many to choose from.

    • #19759
      Alice Ulrich
      Participant

      He has exhausted all treatments for his Myastenia Gravis including (celcept, Imuran, Mestinon,    Plasmapherisis, IViG, and most recently Chemo).   Nothing helped or he had reactions .    That’s how he got it approved.

      he’s currently on 60 mg of Prednisone. He is on his 4th dose of Vyvgart with no change so far.

      Hope you get relief.

      • #19782
        Leigh
        Participant

        Thank you for your reply. I was diagnosed about 8 yrs ago & diagnosed within a yr of major symptoms but looking back I had weird stuff off. & on for a couple of yrs before.  Only have 1 more treatment to try. I had reaction to Cellcept initially & stopped it but have now gone back to it & just started on the highest dose. I am the worse I have ever been. Going to see how I do & finally work in a second opinion. I have had to stop working & have lost all control in my life the last yr. I am praying your husband finds some relief & for you as well. This affects the whole family.

    • #19762
      Jonathan A
      Participant

      I have been in REMISSION from my ACUTE OCULAR MG and ACUTE GENERALIZED MYASTHENIA GRAVIS since 11-27-2020 … after I left my fifth hospital of 2020.    No a single doctor was able to diagnose MG  .. despite having every single symptom.   I was finally diagnosed by a third floor nurse,  who had been in the wards long enough to recognize my MG symptoms.  It took me 8 months to be diagnosed. Every doctor was cluelessly educated, I was finally diagnosed and  have been in remission from ACUTE OCULAR MG and ACUTE GENERALIZED MG.

      I had my original five hours of five days of IVIG at the start  … and have been on CELLCEPT 2000 MGs daily and MESTINON 180 MGS daily ever since.

      I was on that NASTY STEROID PREDNISONE at the start  … but it gave me HORRID ONSET INSOMNIA, a huge weight gain (lost 43 lbs in 6 months being undiagnosed beforehand), and the PREDNISONE along with the STATINS drugs   ….  they were giving me   ….  gave me MEDICALLY INDUCED DIABETES II.

      But I am in DIABETES remission, as tapered off PREDNISONE  by 11-27-2020,  and off shooting up with LANTUS shots since they were tapered off on 10-25-2021.

      So my current disease duo is MG and ACUTE ONSET INSOMNIA  … and I am still trying to find a REAL doctor, who will analyze my three in lab sleep studies and fix my insomnia.  My doctor referred me to a sleep study facility  ….. not to a DOCTOR  ….. so my ALL STRIPES RARE DISEASE RESEARCH GROUP has found over 792 missing medical documents  … and my three LAB STUDIES to translate still.  They also located my missing three types of ANTIBODIES tests  …binding, bonding, and modulating  … all were over the ROOF… so I am SUPER POSITIVE MG.

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