Myasthenia Gravis News Community › Forums › Healthcare and Treatments › Experience with first Vyvgart treatment – is this normal? › Reply To: Experience with first Vyvgart treatment – is this normal?

  • Community Member

    Member

    I have now been on Vyvgart for a couple of years, and it has been truly life-altering. It has been considerably more effective at controlling my symptoms and has even allowed for some peripheral nerve regrowth and return of sensation and function in my limbs. Best of all, I was starting to show motor function impairment in my breathing with steadily worsening exhalation deficiency that has improved by over 80% since I was switched to Vyvgart.

    Do I sometimes feel tired for 8-24 hours after my weekly injection? Yes – this happens about half the time. Do I get flu-like symptoms? This has happened three times in nearly two years. Do I have horrible bruising at the injection site? Yes – looks like I was shot with a marble from a slingshot at point-blank range for 3-5 days. Do I have to get shots weekly instead of every three weeks with the IVIG? Absolutely — but since they switched me to Vyvgart Hyrtulo, I give myself the injections at home, and it takes less than 10 minutes a week.

    So what didn’t resolve? My chronic fatigue improved but didn’t resolve. Instead of being continuously tired all the time, I now get 3-6 hours in the morning where the fatigue is seriously reduced, allowing me to even return to some forms of exercise if done first thing in the day. Is the brain fog still present? Yes, though not as bad. I now have about 50% recall, where before I was all but guaranteed to forget anything that happened more than 3-5 days ago. There are still some signs of minor neuroinflammation on my brain MRIs.

    All that said, would I recommend Vyvgart over IVIG? I think anyone who had a condition that could possibly be treated with Vyvgart should try it. It didn’t cure my disability, but it gave me enough quality of life back that my life is worth living again.