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New FDA-approved Myasthenia gravis treatment: Zilucoplan/Zilbrysq
The FDA in October approved Zilucoplan, a self-administered once-daily under-the-skin injection therapy, to now be marketed under the brand name Zilbrysq for adults with generalized myasthenia gravis (gMG) who are positive for antibodies targeting the acetylcholine receptor (AChR).
Are you excited about this newly approved treatment? Have you talked with your doctor, or plan to, about trying this treatment yourself?
https://myastheniagravisnews.com/news/fda-approves-zilucoplan-now-zilbrysq-treat-achr-positive-gmg/
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9 Replies
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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.
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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.
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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.
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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
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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
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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
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I think this is all from some 3rd party Belgian organization.
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My doctor at the LU Med Center got me enrolled in the program for zilucoplan. Went thru the vaccinations and work with Panther RX (pharmacy for rare disease) for the drug. Daily injections. On my 11th week. I have been on Prednisone for 3 years up to 100mg! Tried cellcept and immuran but my liver did not like them. IVIG every 3 weeks kept it under control for awhile. Did plasma exchange as well. I have had a thymectomy right after diagnosis in 2021. Zilucoplan is the only thing helping me. As I said, on week 11 and off Prednisone and tapering IVIG. If you can do it, I highly recommend. Not all MG types qualify. My doctor has been my miracle. Went from an almost invalid to working out again for an hour daily!
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I have been on Vivgart for over two years now and have had fair results. I started this week on Zylbrysq as an addition to my Vyvgart treatments. The shots are tough but not terrible. Very few side effects early such as headache and stomachache but they are subsiding now. Looking forward to feeling improvement over the next few weeks. Stay tuned. i-am-blessed.com.
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