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.
It has now been over four weeks since my last injection (April 30th). I am still getting weaker each day though mentally I feel better. I may have to give up and get IVIG if this continues.
thank you for keeping us updated. I’m sorry to hear you aren’t noticing much improvement after your last injection. Have you been able to discuss this with your doctor? I’ll be keeping you close in thought, and hope you are able to find relief. -Julie (team member) Interesting, when I went into a crisis with my MG I spent 51/2 months in the hospital. I was given IVIG a couple of times, three FLEX infusions. It stabled me but was still not able to swallow and my speech was horrible. I was being fed through a gruñe fir about 1 year and 3 months. When I was told by my Neurologist that I would never be able to swallow again I refused that notion. I started to research the illness and went to many seminars on the illness. The one treatment that caught my eye was VyvGart. I found another Neurologist that stated the treatment was fairly new but suggested I give it a try. Within 7 infusions I was able to swallow again and my speech came back. I did however, had a flare up where I was not able to swallow again but it was due to some medication prescribed to me. Again, after 3 VyvGart infusions I was able to swallow again. I was getting VyvGart (anti-AChR). Sorry that the treatment didn’t work for you. Question: how many infusions before you stopped? It was a God send for me. Prayers in finding a treatment that will work for you.
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.
Stay with it. It works: Interesting, when I went into a crisis with my MG I spent 51/2 months in the hospital. I was given IVIG a couple of times, three FLEX infusions. It stabled me but was still not able to swallow and my speech was horrible. I was being fed through a gruñe fir about 1 year and 3 months. When I was told by my Neurologist that I would never be able to swallow again I refused that notion. I started to research the illness and went to many seminars on the illness. The one treatment that caught my eye was VyvGart. I found another Neurologist that stated the treatment was fairly new but suggested I give it a try. Within 7 infusions I was able to swallow again and my speech came back. I did however, had a flare up where I was not able to swallow again but it was due to some medication prescribed to me. Again, after 3 VyvGart infusions I was able to swallow again. I was getting VyvGart (anti-AChR). Sorry that the treatment didn’t work for you. Question: how many infusions before you stopped? It was a God send for me.
