Reply To: Anti-MAG treatment update

December 10, 2017 at 9:12 am

Hi all

This is Micky from Australia I was diagnosed with Anti mag 2 years ago and had 6 cycles of cyclophosimide which worked very well I had almost 12 quality months before my condition returned

I then had IVIG which did nothing so from my experience avoid this treatment insist on Rituximab because my condition got very bad during IVIG to the point I had to resign from work and had 6 months off work

I have had 2 infusions of Rituximab 4 months ago and my condition has improved not as good as the cyclophosimide but I am able to walk and my balance is OK not great but ok

I am now back at work which is a big relief but I worry my condition will return so hope my current treatment continues to work for me

My neurologist advised me that I can get Rituximab for the rest of my life so I am hoping that it works for me and I may need only 1 or two infusions a year to maintain my condition

My advice is research as much as you can and take charge of your situation because many of the treating doctors have little or no experience treating anti mag so I tell them what I want and I dont just go with the flow.

I am hoping that the human version of Rituximab is trailed for Antimag as it might offer some hope for us suffering from the condition

Exercise is important in the management of the condition as well

Good luck everyone and remember one foot in front of the other is a step in the right direction