Vyvgart
Did anyone get the new Vyvart infusion yet? My dr wants me try to try it but had flair after 13 yrs with no symptoms until Feb of this year. I had 10 treatment of plasma aphersis did not help at all. Finally put on 60 mg steroids and 60 mg mestion seems to be working
right now. I do not trust a new infusion will not try until if pills stop working. Just would like to know others thoughts.
I am about to start taking Vyvgart. Has Vyvgart worked well for others with generalized MG where IVIG has not worked? I've taken IVIG for 6 months with no impact. Steroids worked but I refuse to destroy my body with prednisone. Has Vyvgart worked for others where IVIG did not?
VYVGART keeps getting very high reviews. People are seeing improvement, far more than I have ever seen with any other treatment, including IVIG. I would definitely give it a try!
- Jodi, Team Member
Go for it! Vyvgart has been a minor miracle for me. Stronger and less fatigued! I was hesitant as well, but am glad my neurologist prescribed it. my 2 neruo dr both said not to get it cause I had 2 cancers colon and thymona in 2008. I really didn’t understand why . But don’t need right now I had 10 treatments plasma aphersis helped me after my mg crisis. I’m almost back to doing everything right now I was thinking of the future just in case Thanks for sharing the perspective of your neurologists!
- Jodi, Team Member
Hey! I'm checking in to see how you've been doing with your symptoms and treatment lately.
- Jodi, Team Memberugh! Back on prednisone just had another crisis had 5plasma aphersis now it’s my voice. Sounds like I had a stroke does this go away? Hey! How has the past month been going for you? - Jodi, Team Member
I have had 3 infusion sets so far ( set= infusion once a week for 4 weeks ). I take Pyridostigmine Bromide 60 mg x 4 a day and prednisone 20 mg once a day. I had three Crisis from end of March to mid June. Went to ER for one of those and hospitalization, ICU for the last two. Ivig had no effect. Plasmaphereses had results after third infusion, after fifth infusion completed I felt like a king for a week, then experienced the worse month of my life. Had Vvygart in early July, after I finished my 2nd set of plasmaphereses during second hospital stay. So I wasn't sure how I would have felt with the first Vyvgart infusion, because plasmaphereses in past had great results for a week. But I felt great for the next 5 weeks. Then I felt discomfort around my shoulders and back for the neck. I have some difficulty breathing about two weeks after last infusion, after each set for a couple of days then I feel stronger than the week before breathing problem began. I feel really good and look and sound normal, but I still tire easily. Life from March to end of June was horrible, life before that was hard. I will take hard over horrible.
Thanks for sharing this update. I'm so happy you're finding some relief, especially compared to earlier this year. Do you and the doctors have a plan for how many sessions you will do? -Lauren (Myasthenia-Gravis.com Team) how is your voice now?
