Reply To: Anti-MAG treatment update
Thanks for sharing your experiences. No worries about the long post, at least from me (who tends to be long-winded LOL).
I have never heard about the connection of flu shots with anti-MAG or that we should avoid them once we have been diagnosed with anti-MAG. At my healthcare provider, a nurse sits at a table in the hallway offering free flu shots and nobody ever asks whether you have an autoimmune disease or not. I got the flu shot last year and still caught the flu over Christmas holidays. I hadn’t realized they are only about 65% effective. So maybe I will heed your warning and just skip the flu shot next year.
So cool about getting a second opinion from Mayo Clinic about your anti-MAG. They actually coined the term “MGUS” and in 2006 performed a clinical trial that showed the efficacy for treatment of anti-MAG with Rituxan/Rituximab.
As far as your comments on muscle weakness, I saw a graph in a study showing the strengthening of ankles and knees after Rituxan/Rituximab treatment for anti-MAG. My neurologist said that when the nerve velocity slows down enough due to anti-MAG antibodies damaging the myelin coating, the muscles no longer get a sufficient “charge” to contract, so they begin to atrophy and weaken. Two years ago I could walk up or down stairs (like at the airport) taking 2 stairs at a time and without touching a hand rail. Now I can’t go up or down stairs without holding the hand rail (or wall) and my legs feel very weak and rubbery. And I am pretty sure it is not just old age!