Forum Replies Created

  • Nikki Meyers

    Member
    February 12, 2023 at 8:55 pm in reply to: Vyvgart side effects

    After trying every drug out there, even the newer ones, I got Vyvert. It changed my life. I feel as good as I can after 5-6 y6ears. It wasn’t overnight like some but by the end of the 4 weeks, I feel really good. At first, I thought I was Superwoman and pushed myself to go overboard. Well, I learned that doesn’t work. But even after that, I usually recover in a day or so. For a week or so starting with the infusion day, I have horrible migraines but that is what happens when I get IVIG or any infusion. To me, a small price to pay. After 2 sessions of 4, I am waiting for about 3 months for the next one (tax season). Not sure if I will make it but willing to try.

    Good luck to all of you

  • Nikki Meyers

    Member
    May 18, 2022 at 8:51 pm in reply to: Can You Tolerate Alcohol?

    Any alcohol more than 1 sip used to make me pass out. It was very exciting to my companions. Not sure what meds caused it. It has been years and now I am not on any meds and I can have a glass of wine but must have some food before I drink.

  • Nikki Meyers

    Member
    May 18, 2022 at 8:56 pm in reply to: Thoughts on Clinical Trials

    I was in the Castesion clinical trial. The first set for safety worked great but wore off after 4-5 months. The second clinical trial for the amount of the drug-I got the infusion monthly did not work at all. They could not get people to try clinical trial so it was extremely small-like 3 people.
    Good luck