Reply To: Anti-MAG treatment update

Hi Peter,
I’m glad you found this forum and thanks so much for sharing your information. I had no problems with the IVIG treatments I had (a series of infusions for 6 months). They didn’t seem to help but then again, who knows for sure as it could have slowed progression a bit. I believe my insurance dictated that I needed to do IVIG first before jumping into Rituximab. I’m thinking that there may have been a need to prove a cheaper alternative either effective or not before going to the more expensive Rituximab. BTW….the very first line of treatment I had was high dose steroids which didn’t do anything either. I’ve also been to the Mayo Clinic and Rituximab was their suggestion. I have had two treatments with Rituximab-each 6 months apart. No bad reactions at all and I do feel that it slowed the progression and may have given me a slight improvement. So hard to objectively measure small changes with something like this. You are right that there are so few of us that the most effective treatment hasn’t really been settled on yet. I am also eager to hear when Polyneuron starts trials as I’d be more than willing to sign up! Again, thanks for letting us know your story and best of luck with moving forward.
Heidi