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.
Tomorrow, I go for my second injection of Hytrulo (second round too). If I don't see any results soon, I will have to go back to IVIG. I continue to get weaker.
Best of luck. We're watching your results.
Also my group that supplies the Vyvgart helped me to get the payments approved. I have a Medicare advantage plan also. They have been super. Also talk to the Vyvgart manufacturer as they help with a lot of things
I have been in contact with a Vyvgart company nurse from the beginning. She is very helpful and so is the infusion center. My problem was the insurance required the MG-ADL form and my doc travels out of town.
An unrelated problem is my grant from the PAN foundation. They are very slow paying even though they show my co-pay is paid (the infusion center doesn't show it paid). Second, they say I can get reimbursed for my Pyridostigmine, but their requirements are impossible. For example, I need to put my PAN group number on the form but there is no group number. They want a cash register receipt that shows my doctor, pill quantity, and much more. Register receipts don't show those things. They need smarter people.
I tried Hytrulo twice and it worked very well, better than Vyvgart Ivs but unfortunately I got horrible rashes so I went back to IV Vyvgart.
The first round didn't do much, so I hope it works better this time.
6/24/2025: My Neurologist call me and asked a number of questions for the MG-ADL form. They are almost identical to the ones in the Vyvgart Hytrulo journal. Yesterday my Medicare Adv insurance approved another treatment so I will be starting again this week. I am getting quite weak and out of breath easily.
If the idea is to treat someone to make them better, then this is not the way to do it. I shouldn't have to wait until I'm in bad shape to get another treatment, which keeps me bouncing off a bad condition. I should get treatments until I'm much better and then regular treatments to keep me there.
