Hope for those who have not responded initially

[David S]

Thanks Bill for your post – update.

I will be starting Vyvgart mid July and am hopeful.

Scott

[Nan]

For me, most of the positive effects of  Vyvgart didn’t manifest until a few days after the fourth infusion of the first round. It was incredible. I have tried Cellcept and Imuran without success and have been taking methotrexate for the past two years without much symptom relief. Vyvgart is even better at treating my severe generalized seronegative MG symptoms than Plex.

[Delia Hernandez]

Lots of encouragement to everyone who suffers from a chronic illness. It’s a daily battle, but we must continue to face it with resilience and not give up.

[Deleted User]

i was a late responder to vyvgart. My first cycle was terrible, i had worsening during the 4 weeks of infusions. I wanted to give up but my neuro convinced me to try a 2nd cycle. Again MG symptoms were worse and much worse than the first cycle. I had already decided to move on to another treatment then 1 month after 4 infusion, i realised i felt better. i thought great, MG is subsiding a bit like it had previously, usually only lasting a week or 2. Each day I kept getting stronger and at some point i could walk without exhaustion. my neuro scheduled another cycle but the gap was about 8 weeks after and for some reason the next infusion cycle also was 8 weeks later. i was feeling great at this point and decided to stay with 4 weeks infusion, 8 weeks off. Eveything has been perfect until my last infusion cycle. first 3 infusions had worsening that lasted a bit longer than usual and with the 4th i have had worsening for 2 weeks. I am still not sure i am fully recovered but i think i am.

[andi_d]

I am in the Vyvgart Hytrulo trial and currently on my 15th cycle. The subcutaneous version has the same success rate as the IV version, just a different administration form. For those of you who are discouraged because you didn’t leave the tap dancing out the door after the first few cycles, give it time. Most of our medications take time for them to be effective and we all react differently. Each cycle has been different for me, some cycles I am dancing out the door and others I want to curl up in bed for a few days. We all have triggers and environmental influences that impact our symptoms and can change the way we respond. Bottom line, give it a chance to work, be patient and look at the big picture. Are you not feeling a zing because you had more energy and have been running around and doing all of the things? You still have MG and need to remember to rest and self care. Now you have another resource in your medicine cabinet to complement your other treatments.

[matt-sereby]

Well there always has to be a naysayer in the group. I guess that’s me. I have had two rounds (8 infusions) of vyvgart. I have weak leg muscles and can’t climb stairs. But my major concern is that both my eyes pretty much closed unless I have Band-Aids holding them open. I saw improvement for about 3 or 4 days. Also had one round of rituxemab. Lost my sense of taste. I could still taste on the first bite but after that everything tasted very very metallic. In conversations with my neurologist I am opting now to have eyelid surgery where they connect the muscle from my forehead before my eyes which only look in the down position get to where they don’t move at all.

[David S]

Hi Matt –

Thanks for your response. So sorry for all of your challenges and that Vyvgart isn’t effective for you. As I am sure you are aware, many are not getting the results that were potentially “promised”.

For many the time between each series is getting shorter and shorter to the point where 4 infusions get you 30 days. I have not seen the statistics, but would be interesting. Our gMG effects us all a bit differently and I think a lot depends upon the severity of the symptoms.

For many, it works great. For me I will wait for a while….

Good luck,

Scott