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 have now finished my first series (4 injections) of Vyvgart Hytrulo. My weakness hasn't changed much so I will now wait to see if there is any improvement. I'm starting to notice feeling better, but I continue to take Prednisone and Mestinon. Feeling better could be a placebo effect. I will update this if I see a good improvement in the next few weeks.
I go for my 4th and last injection (this series) this week. I continue to get weaker and I'm a bit worried that it may get bad enough to need IVIG again. It's a race between Hytrulo being effective and my weakness. I'm still taking Mestinon and Prednisone. I want to thank the PAN foundation for a grant that helps me cover my copay for this treatment.
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.
