Reply To: Anti-MAG treatment update

SundayRush,

That must be exciting to see improvement of your symptoms on Rituximab!! I just started IVIG once every 3 weeks but have read that IVIG usually only stabilizes anti-MAG symptoms IF it works, so on my followup with the neurologist in 3 months I am going to push for Rituximab since from my online research Rituximab actually IMPROVES the symptoms as you are experiencing with more toe movement and recovering calf muscles. That must help your walking a lot!

There is some misinformation online about anti-MAG such as it usually only affects sensory function such as causing numbness; loss of vibration, reflexes, hot/cold, etc. senses, etc. But what I am reading on this forum is that is causes significant loss of motor function, too. But with this disease being so rare, it must be hard to find enough participants and get enough data for a statistically significant study.

BTW, in case you haven’t read about this, Polyneuron Pharmaceuticals in Switzerland http://polyneuron.com/ has in their pipeline an anti-MAG treatment that will act as a “sponge” to soak up the bad anti-MAG antibodies without affecting the immune system. Phase 1 trials should begin in 2019. I am considering moving to Switzerland for a few years to participate if they would accept me in the trial. Phase 2 trial will include the USA in conjunction with a neurologist and medical center in California, but that may be 3, 4 years away. But that is more hope for a better treatment.

Peter