Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people whoโ€™ve been there
  • People who understand what youโ€™re going through
Sign Up Log In
Powered By
Real members of MGteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I am currently on Vyvgart and showing no improvement for 2yrs. at first i was feeling good. now not so much.

March 3
 · 
Reactions

Answer Summary

Members shared encouraging experiences with Rituxan for myasthenia gravis, particularly for those with MuSK antibody or refractory cases not... Read more

Members shared encouraging experiences with Rituxan for myasthenia gravis, particularly for those with MuSK antibody or refractory cases not responding to standard treatments like mestinon or Vyvgart. Several members described achieving near-remission or significant improvement after Rituxan infusions, with manageable side effects like temporary fatigue, and one member successfully transitioned to a biosimilar called Truxcima after two years. A recurring theme was the importance of trusting the treatment process despite scary-sounding side effects, staying patient as MG responds slowly to medication, and keeping detailed records of symptoms to share with doctors while monitoring progress over time.

A MGteam Member

Yes, Janice! I have also written about my Rituxan treatment in answer to other questions regarding treatment so you may have already read them. I have MuSK antibody Myasthenia Gravis and, at the time I was diagnosed, there were no medications specifically approved for MuSK. The only treatment was mestinon, which was totally ineffective no matter how high they went with my dosage. My neurologist also would have tried prednisone but I was on prednisone years before for another problem and had hallucinations on a relatively low dose taking prednisone off the table for me.
I was the only MuSK patient my neurologist ever had so she referred me to Dr. Levin at Cleveland Clinic. He was the one who knew Rituxan was being tried for Myasthenia. I was on 2 Rituxan infusions every six months for two years (4 infusions per year) and achieved what I call near-remission; I still have mild symptoms daily but I can go about my life without thinking too much about MG. I need to rest more than most people, get out of breath a little easier, can experience some swallow problems if I'm tired, etc. All things I live with comfortably considering how ill I was prior to Rituxan. Some people get full remission with Rituxan and some are on a different infusion schedule. The great thing for me is that it was not a forever medication, I'm sure some people do not do well on Rituxan. My only side effect was feeling really tired for about a day after each infusion. Rituxan is not ONLY for people with MuSK. I think it is used for "refractory" patients which means patients not responding, or not responding well to treatment.
Sorry to be so wordy. I think you should probably trust your neurologist's recommendation or at least look further into Rituxan. It is safely used to treat other autoimmune conditions too.

March 6 (edited)
A MGteam Member

I didnโ€™t know that drugs affected people with any type of skin colour difft.How does that happen if we are all biologically the same.

March 15
A MGteam Member

My doctor said they monitor you for at least a year when you start meds. And it can be rigorous. The blood tests alone ๐Ÿ˜” But trust the process.
MG is very slow to react and when it does some symptoms will linger a long time.
If you can keep track of how you are feeling and whether you are seeing any noticeable improvement and inform your doc
My meds were lowered after 2 years. Let it take its time . Don't rush it.
I hope I was helpful ๐Ÿ˜Ž

March 15
A MGteam Member

I was put on Rituxan during a myasthenia crisis, worked well to bring out of the crisis. Was then put on Rituxan twice a year to control the myasthenia and it worked well enough that I could function quite well, still have weakness in legs but no double vision or other issues like swallowing, talking and eating. After two years insurance said since I was having no problems with Rituxan they wanted me to try a biosimiliar of Rituxan called Truxcima and that is working well also.

March 13
A MGteam Member

Alicelloyd
Statistically there are more older white men and African American women 45 & up who have MG. That was one of the first things I ever read about MG back in 2013.
Why ๐Ÿคท๐Ÿพโ€โ™€๏ธ idk

March 17

Related Questions

View All