Reply To: Anti-MAG treatment update

January 8, 2018 at 5:11 pm

Hi everyone and welcome Sundayrush!!
Sorry I was away from email for a few days…after reading all the great information that everyone wrote I wanted to add a few thought/comments/answers to questions. Since I was diagnosed with anti-MAG over two years ago, my neurologist has warned me against a flu shot due to possible triggering of Guillaine-Barre. I had only sporadically gotten it in previous years so I’m not upset about skipping it. I don’t know of any data however that says that folks with CIDP or anti-MAG are more susceptible to GB after inoculation so if you feel you should get it to protect your health, I’d go ahead.

I also feel that there is some muscle weakness associated with this disease even though I’ve read and been told that there shouldn’t be marked weakness with anti-MAG. I don’t know if anti-MAG contributes to muscle weakness or if muscle weakness is a result of anti-MAG but I definitely felt decreased strength. BTW…that seems to have improved a bit on Rituximab. Especially going up/down stairs. I have not had any stress fractures but have had two other fractures due to falls due to my condition (ankle and fibula)-that’s when I started using a cane. I do feel there is something strange that happens in our ligaments-could be a weakening or maybe sensory related that just causes ligaments to feel like rubber bands!

Also, of interest, I am from the Midwest originally (live near Boston now) and have a relative at Mayo. I went there for a full work-up after my initial dx and they confirmed my dx of anti-MAG and their recommendation was Rituximab. I also went to Northwestern (Chicago) where Dr. Burt and Dr. Allen conduct stem cell transplants for people with Multiple Sclerosis and CIDP (I had run into a local person with CIDP in Boston who had good results with a stem cell transplant-she encouraged me to go). They did a thorough assessment and told me that yes, I have anti-MAG (no surprise there) but they also said that they have not had positive results from their stem cell transplant protocol for anti-MAG (they had only done a handful of people with anti-MAG and no one got better). They aren’t sure why it wouldn’t work but it doesn’t at least with how they are doing it. I was grateful for their honesty as it’s a rigorous protocol involving a significant health risk.

Sorry for the length of this post but I do appreciate everyone else’s experiences and hope that I can contribute to the group with what I’ve experienced so far!

Take care everyone,