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Rozanolixizumab/Rystiggo Treatment
Rozanolixizumab, brand name Rystiggo, was approved by the FDA last summer as a treatment for those with generalized Myasthenia gravis and anti-AChR or anti-MuSK antibodies. It is distributed with an under-the-skin infusion with an infusion pump once a week for six weeks, possibly more. https://forumsstg.myastheniagravisnews.com/news/fda-approves-rozanolixizumab-rystiggo-treat-gmg/
Have you started Rozanolixizumab/Rystiggo? Have you noticed any improvement or worsening of your symptoms? Any side effects?
Have you been talking to your doctor about starting this treatment in the future? What possible concerns do you have about it?
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4 Replies
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I was in an 18 week study in which we were testing manual and automatic delivery methods for delivery of the rosanolixizumab. I found the treatment very helpful. I had much more energy physically and mentally and generally felt better.
However, it totally tanked my immune numbers. At one point my IGg level was in the 90s; normal is 565 to 1700. We had to skip an infusion and when my IGg came up we started again. We did that a couple times.
I thought the drug provided a great treatment, except for the immune ramifications. So if you try it, make sure that you have regular check ups on your immune numbers. We checked mine every week.
Good luck! Love and Light,
Frank
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Frank, Albeit a long time ago that you answered this, but my neurologist just suggested I try Rystiggo which is given every 6 weeks by injection. You mentioned an infusion. Was that as it was in the early stages? I first had Vvygart and that did exactly what you stated, lowered my IGG levels and tried ivig but haven’t noticed a difference too much. Hopefully this will work for me, without again lowering my levels, which went into the low 330’s on two occasions. My issues are weakness, extreme fatigue and eye issues.
Thx.
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I’m doing infusions of Vyvgart right now, and you are correct that using the word “infusion” with Rystigio was incorrect. The study I was in was testing delivery methods. I don’t know what they settled on. We tested two methods–one via an electric pump and the other manually. Both were tested in a clinical setting as well as at home. Both methods entailed the delivery of the medicine over 10 minutes. So, it wasn’t really an injection, but I’m not sure it’s correct to call it an infusion, either.
I hope this helps. Best of luck to you!
Love and Light,Frank
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Question. Not totally off the wall, I hope.
What about us seronegative types? Any hope here?
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