← Return to Anyone on VYVGART Hytrulo, a new treatment for CIDP?

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I have CIDP and am considering trying Vyvgart Hytrulo. Had a relapse a year ago and have been getting IVIG infusions every three weeks but they don’t seem to be helping. I have had blood clots and have been hospitalized last year and the year prior with respiratory infections. If you have been on Vyvgart, have you had trouble with respiratory infections or any of the other problems they mention as being possible to take place? I was diagnosed seven years ago, in the hospital and rehab four and a half months and came home in a wheelchair. Took me two and a half years to walk again on my own, write legibly, etc. I was close to full recovery and got past the five year mark but had this relapse a couple months later. So now trying to find my way back again. I am also on a high dose of mycophenolate (generic for Cellcept) and gabapentin for the horrid neuropathy, numbness and tingling. Steroids actually saved my life first time around but had so much trouble w/tremors that my neurologist was hesitant to use again. So, if anyone could respond regarding Vyvgart, I would surely appreciate it. Thank you.

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Replies to "I have CIDP and am considering trying Vyvgart Hytrulo. Had a relapse a year ago and..."

@mamaskids07
Not formulated for CIDP, it was formulated for MG but sometimes works for CIDP. I’m on weekly IVIG of Privigen and function normally. The shots was sold to me as being able to maintain me at my current level which would have been pretty good. Tried it but by my four dose was in a wheelchair. Took me four weeks of back on IVIG got get me back walking.

@mamaskids07 I started Vyvgart infusions in June 2023 then switched to Vyvgart Hytrulo later that year due to vein problems. I go to a clinic where a nurse gives me my injection. My schedule is 4 weeks on and 4 weeks off. I have had good results with Vyvgart other than somewhat weaker legs. For the past 8 months I have had reoccurring uti's. I have taken numerous antibiotics with no results. At my last video visit with my neurologist he suggested this may be the side effect of Vyvgart. I am beginning to think he may be right. The soonest I can talk with him again is in early June. I want to explore this further - maybe asking about the dosage.
Since I have had good results with Vyvgart I don't like the idea of changing medications unless really necessary.