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How quickly did Raviluzimab (ultimoris) work once started ?
Hi all, I’ve just started Raviluzimab and was wondering how quickly people have noticed it worked. Also if anyone was on IVIG at the time were the supplemental doses on top of the maintenance doses when given IVIG at the same time or just the maintenance dose. I get a supplemental dose in the middle of the 8 weeks at week 4 as I have IVIG every 4 weeks
Also how long before you could come off the IVIG and how did it go ?
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6 Replies
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It may be hard to get a response because a lot of us here went directly from Soliris to Ultomiris. Since Ultomiris works in the same way as Soliris there is no ramp up period. Taking Ultomiris at the same time as IVIG is puzzling. I went to Soliris from IVIG with no overlap. I would have thought the transition from Ultomiris from IVIG would be the same.
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I have had MG for 10 years. I am 78. The usual medications, including Prednisone for the last 2 years. Usually Mild symptoms. However, recently severe issues with swallowing and speech. Extra meds did not help. Neurologist offered Ultomiris. DURING the 30 minute infusion I was able to take my first full swallow of water in 2 weeks. Now in the program and tapering down prednisone.
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I was on IvIG until it was no longer effective, had a severe flair and was put on plasmapheresis for 10 days, then started on Ultomiris. The effect was almost immediate… had an interim booster of IvIG after 1st dose and have been on Ultomiris for 1.5 years now and I’m about 95% symptom free. I have occasional “air hunger” and tired voice and occasional cramping but that could be the Mestinone. I am down to 3mg of prednisone and hopefully to zero in a couple of months.
Diet, exercise, 7-8 hours of sleep and trying to keep stress to a minimum!
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I actually had my first ultomiris fusion yesterday coming off of vyvgart. I have not felt this good in a year.. I’m still not 100% but dang I am close LOL I think this will be my miracle drug.
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Anne-Marie, best of luck to you!
To all on this site, if you were going to make a change to another gMG medication today, what would it be? Is Ultomiris considered the best option? I get that it’s a snowflake disease and that we’re all somewhat different, but I think I’m hearing somewhat of a consensus that this is the go-to drug at the moment. What’s everyone’s experience?
I’ve been on IVIG for a long time and it works well, but there’s a possibility that insurance may want me to make a change in the coming year. Thanks.
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I did not like Vyvgart, as it wore off quickly. I just started ultomiris. Had one infusion and really feeling good. Hope it lasts.
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