Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’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.
A MGteam Member asked a question 💭
Vero Beach, FL

Back when my muscles just lost it in 2023, I spent a month in a teaching hospital with the doctors trying every standard MG medication and treatment without results. There was no doubt I had MG. The blood tests showed that clear as day. So they put me on 50mg of Prednisone, classified me as refractory and shipped me off to a nursing home. Now, three years later, with Rituximab having barely moderate results, I'm wondering whether I should try again with all those MG standards that had no effect… read more

June 30
 · 
Be the first to react
MGteam

That's a really important question, and it makes sense to be thinking about this — especially after such a difficult journey. The short answer is: yes, it can absolutely be worth revisiting treatments that didn't work before, but timing and context matter a lot.

MG is a condition that can change over time. How your immune Show Full Answer

That's a really important question, and it makes sense to be thinking about this — especially after such a difficult journey. The short answer is: yes, it can absolutely be worth revisiting treatments that didn't work before, but timing and context matter a lot.

MG is a condition that can change over time. How your immune system responds to treatments in a crisis moment (like a severe episode requiring hospitalization) can be very different from how it responds when your condition is more stable. Some things worth discussing with your next neurologist include:

- Pyridostigmine (Mestinon) — sometimes more effective when MG is in a calmer phase
- Azathioprine or mycophenolate mofetil — these work slowly (sometimes 12–18 months) and may have been abandoned too early during your crisis
- IVIG or plasma exchange — useful for managing flares and can sometimes "reset" responsiveness to other drugs
- Newer targeted therapies like efgartigimod (Vyvgart), zilucoplan (Zilbrysq), or rozanolixizumab (Rystiggo) — these work on very specific parts of the immune system and may be options depending on your antibody type Since Rituximab has shown only moderate results, your neurologist may also consider whether combining it with another agent or switching to a newer biological therapy makes sense for your specific antibody profile.

Finding a new MG specialist sooner rather than later would be a strong move here — this is exactly the kind of complex, refractory case that benefits from a specialist's eyes. An MG center of excellence, if accessible, could be worth exploring.

June 30
A MGteam Member

Hi RobertJaffe
I'd call my neuro if you think you might want to revisit a medication.
Dont take an old one. You never know what the side effects could be.

July 2
A MGteam Member

What is an MG Center of Excellence?

June 30

Related Questions

View All