Vyvgart Hytrulo journey
I want to start a thread to post my experience with Vyvgart Hytrulo as a treatment for gMG. It is not easy to get an understanding of what is required and how the treatment works. I have had MG for one an a half years and been hospitalized twice. I'm an older male and take Pyridostigmine and Prednisone and have had five series of IVIG. I have started my first series of four treatments of Vyvgart.
My Neurologist submitted a request for treatment of Vyvgart and within a week I was contacted by them to discuss my treatment. My first concern was cost which could be $16,000 per treatment, well beyond my means. I have a Medicare PPO advantage plan but didn't understand how they would cover it. Also, was it possible to get foundation help?
After discussing this with the Infusion center financial department I found that the cost was limited by my maximum yearly out of pocket limit. They also offered a no interest payment plan. Here is the lesson, start treatment near the beginning of the year. This will reduce your monthly payments and cover all treatments during the year. You will be charged for the whole amount at the first treatment so there is no refund if you have a problem. So, if your copay is $4000 that would cover you for all treatments during the year but starts over on Jan 1 of the next year if you continue. They will tell you what your copay is before your start treatments. I want to update this post with further info as I go through the experience. Your experience may be different.
I had my second Hytrulo injection today. So far no adverse reactions. There is a slight burning feeling while it is being injected which is usually stopped when the nurse slows the injection down. Then, a 30 wait to make sure all is ok. Really far easier than IVIG and only once a week for four weeks. At this point, one week after my first injection, I see no improvement in my symptoms, but that is expected.
David, I thought my post was deleted since I couldn't find it. Your reply brought it back, thanks. Please see my reply to Hiker24 for more of my experience before Vyvgart.
I recently went in to see a specialist for MG, same as you with starting IV treatment with IVIG but the specialist suggested switching to Vyvgart, as a better option, so i'm about to try it as well. IVIG definitely improved my symptoms, before IVIG it got to the point where I could not speak, chew or swallow, and with IVIG all of those symptoms are fairly normal. Now it is just a general lack of strength and get winded very easily, one flight of stairs i'm huffing and puffing. Will see if vyvgart puts me any closer to where i was pre-MG. It is April and i'm already way over my deductibles for the IVIG treatments, so Vyvgart is free. Pretty sure i hit my max deductible in January.
My experience with MG is close to yours except I had to go into the local hospital ICU for a couple of weeks getting IVIG along with Prednisone and Mestonin. I wasn't getting much better and was on Bi-Pap for breathing, so they medivac me to Utah for more IVIG and Plasmapheresis. That went on for about 1 1/2 weeks and I had to be intubated part of the time. Then rehab to regain some strength. The intubation was horrible and I never want to do it again.
I can say that the people at the Utah hospital were wonderful, especially the nurses and Physical therapists. My Medicare plan didn't cover my transportation home so I had to pay a couple to drive me seven hours.
I'm going for my second Hytrulo treatment on 4/16/2025.i had an MG crisis back in January, unlike going hiking with MG where your breathing gets difficult but then you rest and recover, a crisis (was stress induced, my dog died), 100% stopped breathing, couldn't inhale anything just nothing, couldn't speak, no air. I went straight to my cpap and put my mask on, nearly blacked out in the process. My wife called 911, 20 minutes later they arrived. If not for the cpap, i probably wouldn't be here. So anyone with MG, should REALLY consider getting a cpap/bpap machine. The doctor had told me stress can induce a crisis, but i was like... i don't have a lot of stress in my life and didn't take it seriously. But sometimes stress comes out of the blue, and when it does, if you have MG, BEWARE!
Yes, Thank you. I'm very interested in your experiences.
