Do You Have Seronegative Myasthenia Gravis? What Treatment Has Improved Your Symptoms Best?
Are you diagnosed with seronegative MG?
Which treatments have you been approved for? Which have you tried?
Which form of treatment offered you the most improvement, and what doses?
- Jodi, Team Member
My name is Saul Calderon,
I was diagnosed with seropositive myasthenia on 01/18/2023. At the beginning, my neurologist treated with Mestinon 120 MG 3 times daily but didn't help me much, so he added IV VYVGART infusion one each week 4 weeks stop for 5 to 7 weeks to start again IV VYVGART 4 weeks cycle.
IV VYVGART infusion cycle improved my health and reduced MG symptoms by 65 % so far. I am the beginning of my 4 VYVGART cycle. My neurologist said that MG symptoms could decline up to 100% taking in consideration data from other MG patient in studies.
Could someone please tell me what IVI treatment stand for ?
Thank you and best wishes for all MG community for this Christmas 2023.
Yes I am Seronegative. The Mestinon helps a lot because I can tell if I miss a dose by weakness/heaviness in my arms and legs. Having 3 other autoimmune diseases it’s real hard to pinpoint flares and what the culprit is though. But I also haven’t had the double vision since beginning the mestinon in January of this year. Looking back on things, I have had to have my esophagus stretched twice but always attributed it to either the Lupus or Sjogrens. It could have been the MG all along?
Hey! How have you been doing lately?
Jodi, Team Member
I've recently been diagnosed with generalized seronegative myasthenia Gravis. I tried Mestinon twice but the side effects were too bad to continue. Especially the muscle spasms. I'm on carbamazepine for the spasms now but nothing for the MG. My neurologist wants to try me on IVIG but I'm reluctant. I've heard about terrible side effects including meningitis. It would be helpful to me if I could hear some of the members experiences with IVIG treatment. Thanks for your help!
I am seronegative and tried mension and prednisone.didt help.now on octagam infections every 3 weeks.seems to be helping a little. I had 5 so far.4 hours each time 😕.so far it's only ocular mg
Yes, he's a bit stubborn. He tends to downplay the benefits of IVIG. My son called today and said to him "You just had IVIG, didn't you?" He could hear the more effective diaphragm from across the state! The treatments work--but patience is the key. Juliana (team member.)
