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.
7/27/2025: I finished my IVIG five day treatment this past week. It takes about three hours for each day treatment. Now to see if I can regain some of my strength again. I do feel a bit better today.
Good to hear.
I finished my second round of Vyvgart Hytrulo and I have not improved just slowly getting weaker. I will start IVIG on Monday 7/21. So this is the end of the Hytrulo journey.
I am so sorry, WMMG. I had my fingers crossed for you and I'm sure others did as well. Your experience narrows my own options. Good luck with IVIG. I think it's a great choice.
Thank you so much for this information. I don't think we do enough discussion of the financial aspects of MG treatment here. I have not taken Vyvgart but my doctor has recommended it if I see further decline. So, I have researched it. My understanding is that:
+ Medicare Pert B will cover 80 percent of the cost of Vyvgart infusions If they are done in a clinical setting. My supplemental insurance will pick up the rest.
+ Medicare Part D (drug coverage) will pick up at least some of the cost of Vyvgart Hytrulo when done at home.
In each case, pre-approval is required and there are some conditions that need to be met.
If you have a Medicare Advantage plan, you are at the mercy of the plan administrator and the plan rules. You will need to research this to avoid a shocking bill.
I have Part B coverage but not Part D, so I would do Vyvgart in my doctor's clinic.
If anyone has a different understanding or experience, I'd like to hear about it.I had my injections at an infusion center which is outpatient. To cover the copay cost, a patient can apply to NORD or PAN foundations if you meet the income rules. NORD requires the Neurologist to fill out a form, but PAN doesn't. PAN is very slow in paying the infusion center and you must agree to have the charge put on a credit card to get started. I went with a payment plan with a monthly charge (recommended). I got on a waiting list with PAN and once approved I asked the Infusion center finance office to stop charging my credit card, which they did. I have not received any refund yet as PAN covered the whole cost of my copay. To keep the payments low it is best to start the treatments early in the year since they are split up by the number of months remaining in the year.
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.
