Your Replies

  • January 10, 2018 at 4:01 pm

    Article on anti mag from study done at Penn State Hershey recommends Rituxan for positive anti mag. Why doesn’t Medicare approve, but other insurance covers it?
    Was not able to forward article, but it is from Annals of Hematology June 2015 Volume 94 Issue 6 Pages 1011-1016
    Hope it helps.

    January 7, 2018 at 2:40 pm

    When I had IVIG it wiped out my white blood cells. Needed Neulasta shots. My new Neuro won’t prescribe.

    January 7, 2018 at 11:23 am

    Thank you for Polyneuron link. Will ask my Neuro and hematologist about it.
    Totally agree with your assessment of atrophy, muscle, etc…
    Ila, thank you for links. I’ll forward anything I find to group.

    January 6, 2018 at 3:07 pm


    The one thing that I noticed since having Rituxan is that I can move my toes and feel muscle move in my calf. That was so exciting for me. In cold right now and toes don’t move as well. Hope this helps others who want to try Rituxan.

    January 6, 2018 at 2:58 pm

    Hi Peter,
    I’m just figuring out how to read these threads and saw your question about foot you I had stress fracture last year. It came out of the blue. This year stress fracture occurred in another bone in same foot, when I was walking more and started going to the gym. Tread mill took off at high speed and catapulted me against a wall. Tendon and sprain in the other foot.
    I don’t know if weak bones that fracture are part of this. Do you have Mgus? Is there a connection?
    Take care.

    January 6, 2018 at 2:22 pm

    To Ile, Heidi, Peter, etc. Thank you for welcoming me. Some of you wanted to know about plasma exchange. Had central Cath and it helped stabilize progression, but wound up hospitalized twice with serious infections. My neurologist then put me on cytoxan. That also stabilize me. For tracking my progress I used walking on a track. My husband recorded and graphed all of my progress during this time. We took it to our neurologist so he could see progress or regression. A few years after the cytoxan my times on the track went down. Neurologist did not want to put me on cytoxan again and that’s when he decided that Rituxan would be the best and that it was a promising treatment for anti mag. And presently waiting to hear if Insurance approved it. I am going to request a nerve conduction study since it has been years since I’ve had one. Good idea from Peter.

    January 6, 2018 at 2:04 pm

    Thank you. I have a long way to go. Am thrilled to share and learn about anti mag.

    January 5, 2018 at 9:03 pm

    This is my first reply. Have had every treatment. Improvement only with plasma pheresis and cytoxan. Have anti mag and started 4 weekly Rituxan treatments ending in October, 2017. Hematologist wants me to have one treatment every 90 days. Was improving so much and trying to get walking without cane on track working up to mile. Broke bone in foot and sprained other foot in accident. Big set back, but feet healed and trying to get back and get next treatment.
    Want to hear from anyone who has this. Was a former runner and this has been a challenge each day. Also a victim of age and on medicare. 😊