[Debbie]

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

[Wood]

I’ve been on the CellCept since October.

I can’t do the steroids because of Type 1 Diabetes.

[Marguerite Thibeau]

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

[Wood]

Did you make the switch to 1 week on and 1 week off?

[greynold]

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

[TheresaG]

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.

[resilient]

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!

[Wood]

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.