Reply To: Anti-MAG treatment update

January 7, 2018 at 2:57 pm

SundayRush,

The Polyneuron link was initially posted here by Jim-LA and after emailing the company directly about the anti-MAG treatment in their pipeline, I made a copy about the drug from polyneuron’s website and gave it to my neurologist who had not heard about it but stated that the concept of the treatment to act as a “sponge” to collect the anti-MAG antibodies sounded VERY promising. Of course, Polyneuron is still years away from getting the drug to market IF it works as they hope.

Ila’s link is an excellent summary of treatments for anti-MAG! Thanks for posting. Several months ago I spent all day searching Google for variants of “Anti-MAG Rituxan” “Anti-MAG Rituximab” etc. and reading all the studies on anti-MAG treatments I could find. The current #1 treatment appears to be Rituxan/Rituximab. IVIG was found to help some anti-MAG patients stabilize or slow progression, but not much disussion about improving the symptoms and the required 3-week infusion intervals are not very practical (as I am finding with my current IVIG treatment in which I get IVIG infusions every three weeks on two consecutive days of 5-6 hours each). But Rituximab seems to improve anti-MAG symptoms for patients and is effective on a higher % of anti-MAG patients than IVIG and has a much longer time interval between infusions than IVIG – plus it works better.

After my online research, I emailed four MGUS experts/researchers at The Mayo Clinic. Although they all correctly stated they could not make a diagnosis through email and all invited me to The Mayo Clinic for a second opinion, ALL four doctors agreed that if I was diagnosed with anti-MAG neuropathy, Rituxan/Rituximab is an effective treatment, with one doctor also stating IVIG is sometimes used. So their input confirmed my “Google research.”

Now I’m really looking forward to the clinical trials of Polyneuron’s anti-MAG drug or for someone in this forum to post another “wonder” drug.

Peter