Myasthenia Gravis News Forums Forums Healthcare and Treatments New FDA-approved Myasthenia gravis treatment: Zilucoplan/Zilbrysq

  • TheresaG

    Member
    January 5, 2024 at 3:26 pm

    I’m currently on vyvgart. I have a decent though not perfect response.

    I would be inclined to ask for this except for the meningitis risk. That just scares me.

    Have any of you tried rysstiggo? Same risk.

  • jerry-johnson

    Member
    January 5, 2024 at 6:06 pm

    I am currently on Ultomiris and having very favorable results. If and when my body builds up an immunity to it, I would consider it. Right now a treatment every eight weeks is working for me. The risk of meningitis is possible but that is why they want you to get vaccinated before starting with it.

  • donald-delano

    Member
    January 6, 2024 at 6:07 pm

    I am on Ultomiris getting infusions every 7 weeks now. I have never had double vision problems, but sever problems with some facial muscles, chewing, swallowing, speech and overall muscle weakness and balance issues. Everyone would ask if I was having a stroke after I had been speaking for more than a few minutes. After the two load in doses I was getting good results and off of Mestinon (but still on CellCept) from the neck up, not so much with walking and balance. I would have to start taking Mestinon at about the 3rd to 4th week as my voice would become strained and I would start to develop chewing and swalowing issues. But it was only 30-60 mg at a time instead of I the 120 every 3-4 hours from before. By the ti I had completed 5 injections, I am now getting relief until about week 5-6. Then an occasional 30 mg Mestinon when they would crop up. So my dr moved infusions to every 7 weeks instead of 8. This coming March will be one year.

  • wayne-eisen

    Member
    January 6, 2024 at 7:17 pm

    Hi, folks –

    I’m about to have my 2nd cycle of Vyvgart in February. I’m not very happy with the results so far. I’m very interested in hearing about results from using <b style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>Zilucoplan. Can anyone share experience with <b style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>Zilucoplan? Thank you! Wayne

  • wayne-eisen

    Member
    January 6, 2024 at 7:24 pm

    Hi, folks –<div>

    I’m posting again because the previous post got distorted.

    I’m about to have my 2nd cycle of Vyvgart in February. I’m not very happy with the results so far. I’m very interested in hearing about results from using Zilucoplan. Can anyone share experience with Zilucoplan? Thank you! Wayne

    </div>

  • wayne-eisen

    Member
    January 10, 2024 at 3:57 pm

    I contacted the makers of Zilucoplan.

    First they emailed me:

    We are sorry to inform you we do not currently have access to the medicine you requested. We apologise for the inconvenience and wish you the best of luck. If anything changes we will reach out to you by email.

    Kind regards,

    TheSocialMedwork Team
    ____________________

    Then they emailed me:

    Thank you for submitting an enquiry and for letting us know that you can get a prescription. Our Patient Support Team will be in touch with you shortly.

    In the meantime, here’s what you need to know to make this process faster:

    That was followed by a bunch of instructions, including how they don’t accept insurance, but how maybe they will. 🤣 I’ve asked how much it will cost for pi r 23 mg a day. No response yet.

    Wayne

  • wayne-eisen

    Member
    January 10, 2024 at 3:58 pm

    I think this is all from some 3rd party Belgian organization.

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