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  • Changeover to targeted treatments versus additive to older immunesupressants

    Posted by Anne-Marie on May 24, 2024 at 4:19 pm

    What are anyone’s experiences in changing over from older immunesupressants to the newer compliment inhibitors ( Solaris or ultimoris or ziucoplan ) or FcRn (vygart or rystiggo/rozanolixumab).

    If this was done, how was it done ? I am in Australia where there is limited experience and availability of these. I have gMG with modulating antibodies. Also SLE and hypothyroidism. I saw the recent MGFA conference on u-tube where it was suggested the ideal combination of treatment is addressing both antibodies ( FcRn or other immunesupression or plasmaspharesis/IVIG ) and compliment inhibitors together, but I’m not sure they are doing this yet.

    I take maximal doses of mycophenolate, rituximab, IVIG 4 weekly and Mestinon 180 mg every 3 h and require Mestinon more often in the last week of the IVIG cycle, or to exercise or to work full time at times. I run a mostly 80% normal life, just severely immunosuppressed. I still get droopy eyes when reading/ watching Tv or driving or if I delay Mestinon, and leg greater than arm weakness and fatigue when I overdo it and don’t rest when I need to.

    I’m worried the newer drugs may be no better than what I’m already on, short of less overall immmunosuppressant and thus risk from this by utilizing more targetted therapies.

    Frank Morrow replied 3 days, 11 hours ago 3 Members · 2 Replies
  • 2 Replies
  • Jodi Enders

    July 8, 2024 at 12:47 pm

    Your doctor would most likely have you slowly taper off the current immunosuppressant (mycophenolate) you are on and then may put you on to maintain symptoms during the period the new immunosuppressant may take up to a year to start seeing improvement if they believe the IVIG and mestinon are not going to be enough: prednisone, plasma exchange. Those offer rapid improvement if they work with your body.

    When deciding on which immunosuppressant to try, your doctor will have to consider any conflicts with your SLE and hypothyroidism. The following treatments are all antibody-based biologics like Rituximab you mention you are on:

    • Eculizumab (Soliris®) and efgartigimod (Vyvgart®)
    • Ravulizumab-cwvz (Ultomiris®)
    • Zilucoplan (Zilbrysq®)
    • Rozanolixizumab-noli (Rystiggo®)

    Biologics are drugs made from living organisms and are often administered intravenously. Allergic and infusion reactions are possible, which may require the drug to be stopped. More severe side effects include changes in white blood cell counts, infections such as respiratory tract and urinary tract infections, and changes in liver function.

    Soliris, Ultomiris, and Zilbrysq have a boxed warning. People treated with these drugs have developed life-threatening infections, including meningitis, a deadly bacterial infection of the brain and spinal cord. You should get a meningococcal vaccine at least two weeks before your first dose of Soliris, Ultomiris, or Zilbrysq. Your doctor will also likely have you get regular booster shots, and your doctor may recommend antibiotics to avoid meningococcal disease.

    – Jodi, Team Member

  • Frank Morrow

    July 10, 2024 at 2:46 pm

    Anne-Marie I understand that your current regimen may not be giving you the same results as you had when you first started them.

    I started with immunosuppressive medication called Methotrexate back in 2019 when I was first diagnosed with gMG which seemed to work just fine. However, in 2022 I had a conversation with my Neurologist and she said it was okay to add Vyvgart to my regimen. So in my opinion it is a combination of both immunosuppressive and AChR biological drugs which are doing different things.

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