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Vyvgart Hytrulo Infusions Wearing Off?
I had my first round of weekly infusions of Vyvgart Hytrulo in April 2025. May was the month off. The benefits were tremendous — until about 2 weeks after the last weekly infusion at the end of April.
The double vision, closed eye, weak neck, fatigue, difficulty breathing, imbalance, and more came cascading back in.
My next infusion is June 3, but I will now be on a schedule of 2 weeks on and 2 weeks off.
Has anybody had their symptoms flare up while in the “in-between” period?
Thanks for any info!
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11 Replies
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The combination of Vyvgart and cellcept saved me. Only problem is cellcept takes many many months to start working. I had to do plasma exchanges until it kicked in. But now I’m great . 4 weeks on and 4 off. Cellcept 2 times a day. Good luck to you
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I’ve been on the CellCept since October.
I can’t do the steroids because of Type 1 Diabetes.
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I had the same problem. I called my Vyvgart Pathway and my Doctor and explained the problem. I asked to try every other week dosing so my symptoms would stay suppressed on the same amount of medicine. I’m much more stable on this schedule. I switched to Hytrulo, and am now starting self injections at home as I find the hours of driving to my infusion center tiring. I tend to push myself too hard so I listen to my body and rest when I over do. I’m so grateful to have a near normal life again!
Marge
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Did you make the switch to 1 week on and 1 week off?
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This Reply is to original poster. Problem with Reply button on other msgs.
I’ve been on Vyvgart Hytrulo INJ for over 2 years, prior to that I was on the Infusion Vyvgart for nearly 2 years and initially on IVIG infusions for 2 years. My break time between Vyvgart H injection set (4 weeks, 1 inj./week) is only 1 week. Vyvgart Hytrulo was initially wonderful and eliminated all MG symptoms on this 1 week break schedule. I asked to see if a 2 week break period would work for me. I tried this for 2 cycles and realized that I could not have injections of any longer break duration than 1 week. MG Symptoms were so much worse during the 2nd break week than what I had experience prior to taking Vyvgart. Now, over a 2nd year with Vyvgart Hytrulo, I am finding that I’m experiencing minor MG Symptoms with Facial/Oral & overall Muscle weakness to the point that I have resumed taking Mestinon and occasionally 10 mg. Prednisone on particularly bad days during the Break Week and often until the 2nd Vyvgart Inj week.
So, for now I’m staying on the 1 week Break Week between injections and that seems to work best for me. Hope you fare well with your treatment.
greynold99
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As we know, we are all different. I began VyVgart infusions 3 years ago, I went 1.5 yrs suffering those 3 down weeks. So went to 4 on, 1 off. Did this maybe 8-9 months, then I still was losing the crash on day 10, and needing 2 infusions to get back to baseline. In reality, benefited 3 out of 6 weeks. 2 months ago, I began every other week. It has been amazing! I have quite a tract record, but somewhere in there I think they realized many of us were suffering. My dr/ per this weeks meeting is going to try me on self injection hytrulo. I fear, it will be not absorbed as well as infusion, but we shall see.
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I had a total MG crisis May, 2024 beginning the day following ACDF (anterior cervical dissector fusion) surgery. A week in ICU saved my life but I couldn’t get anywhere near functional in usual Selector & both instant & ER Mestinon. Dr put me on Vyvgart for 7 months. I had many, many side effects and essentially no improvement. Another month passed as we arranged for IVIG. First day’s dose was aborted when I got cardiac symptoms. ER team determined my heart can handle the treatment as long as we irate it slower than normal. I went back for the second day and did fine in slow titration. Yesterday and today I had a second IVIG. I have seen mild improvements and am excited to see what the next weeks bring.
We all are different! I thank God for my husband who is an encouraging helper, and that I have a resilience that has passed many near fatal events in the past 60+ years!
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Today I had my second of four weekly Vyvgart Hytrulo infusions. This is Round TWO for me. 4weekly infusions in April, 4 weeks off in May (with all symptoms returning by mid-May).
We are going to finish this 4-week run, then take 2 weeks off and 2 on to see how it goes.
I’ll update on whether that helps.
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The Vyvgart shots are so much better than the infusions. I’m waiting for my insurance to approve the shots I can do myself. Because of the cellcept I’m doing well 4 weeks on and 4 weeks off. Before the cellcept I could never get under control. All the drugs suck but I’m doing well ,working and living my life.
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Just completed 4 weeks on, five weeks off and starting second round of self injections…am stronger, limited side effects, and can say it has helped. Still weak, with occasional swallowing and balance problems and all the horrors of Prednisone but functioning better.
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I just finished up my second cycle of Vyvgart Hytrulo and experiencing the same short term effectiveness of Hytrulo.
I’m 65 and in my fourth year since my gMG diagnosis… I’ve had multiple gMG symptoms from the beginning. I’m currently on my 4th infusion type of treatments in four years still exploring for better results.
For me, Vyvgart Hytrulo is not only lasting between the full 5 week cycles but it is not meeting the seven day weekly cycles. I’ve become weak on day six of a 7 day weekly injection cycle and nearly unconscious or at least incoherent on injection day seven twice now to where I didn’t have the strength or mind set to inject myself on two occasions of my eight total Hytrulo injections during these last two cycles. On these two particular occasions, I slept for many hours after my wife ended up giving the shot and the same incident also occurred a third time in the 5th week following the first cycle which is very scary each time, so I’m obviously not looking forward to the end of my 2nd five week cycle… We’re currently staying at our summer cabin in the mountains a fair distance from any local Hospitals that have gMG specialists or we would have rushed to a hospital in each case…
In short, my neurologists doctor was honest to admit that their clinic was too busy to give me the quality of attention and treatment needed and has referred me to the Mayo Clinic in Phoenix next week and I will share what they prescribed for me as all our bodies are different coping with gMG to a degree..
Just a little History….
I tried IVIG for my first 6 months in 2022. Worked great for gMG symptoms but couldn’t cope with the severe migraines.
Then I went to Vyvgart infusions for almost 3 years and it also worked great except it would only last 40 days in a 50 cycle and most gMG symptoms returned in those last ten days. Insurance wouldn’t allow my Neurologist to reduce cycle dates.
I then changed to ULTOMIRIS for six months which didn’t feel good in my body from the beginning, it did work on some symptoms but I mostly experienced severe respiratory and muscle decline symptoms that I still haven’t recovered from plus I experienced severe mood swings from depression to rage that are finally gone since I got off and switched to Hytrulo. Knock on wood it’s over cuz I’ve never experienced severe mood swings or depression in my life…
(Again ULTOMIRIS may be a miracle drug for most gMG patients but our bodies and severity of gMG symptoms are different and unfortunately it didn’t work for me with many disappointing set backs.)
For the Last 4 months I’ve been on Vyvgart Hytrulo, it works great in short periods but for me it does not last the full seven days in a weekly cycle nor does it last the 5 week cycles. Again our bodies and severity of gMG are different..?)
I’ve been waiting for this Mayo Clinic appointment for three months now and very hopeful they can figure my body out and what it needs and I will certainly share my progress back on this forum as I move forward with their recommended treatments.
Best Regards,
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