Rituxan CURES? AntiMAG????

    • Anonymous
      July 16, 2007 at 12:05 pm

      Hey all! Hope everyone is feeling manageable. I know better than to say feeling great, but I really do wish everyone was feeling wonderful.

      I saw a new neuro the other day since my insurance is changing. She is questioning my dx of AntiMAG but I am pretty confident that the other two doctors were correct. She also said that IVIG really doesn’t “cure” AntiMAG but only temporarily relieves the symptoms and that in order for me to be “cured” I need to be on rituxan infusions.

      While this was music to Charles’ ears, I sat there kinda dumbfounded. I didn’t think there was a cure for AntiMAG? Is anyone else on Rituxan? I have been researching online and really haven’t found anything on it that makes me not want to try it. I am willing to give anything a try to feel better but don’t want to get falsely optimistic that I will suddenly be cured.

      Comments? Suggestions? I am really at a loss. I see her again this Wednesday to go over medications and set up some sort of a treatment schedule.

    • Anonymous
      July 16, 2007 at 7:55 pm

      You might find this thread interesting: CIDP-Rituxan Treatment? The thread was started 5-28-06 and you can locate it by clicking on “search” above and typing in “Rituxan”. Go to page 2 of results to find it. Norb and Allaug (and others) have quite a discussion about Anti-Mag and Rituxan in the thread. I hope this helps you!!! 🙂

    • Anonymous
      July 16, 2007 at 10:43 pm

      Hi Kelly, There is no cure for any of this gbs/cidp/pns stuff. Rituxan is just another type of treatment, just as ivig and pp etc. Actually ivig doesn’t help antimag as much as it helps other variants. Don’t get you hopes up to high, always go with your instinct. As for the question of dx, has your new dr looked over All the test results that your other dr made his dx from? It isn’t unusual for drs to question other drs dx and opinions, it happens quite abit. Sometimes you get a dr who is more knowledgeable about cidp then the next one, just stand up for yourself, don’t let the new dr tell you things that aren’t true, ask questions and speak up when you disagree. Take care.

    • Anonymous
      July 18, 2007 at 3:45 pm

      Dear Kel!

      Hope you have read the thread mentioned by Iowagal. In addition to what I’ve written there, I can tell you that I have continued to improve since then. Ask your neuro if your antiMag is caused by Monoclonal Gammopathy (MGUS), because then the probability of your getting better – or even more or less cured, like me – by Rituxan. If your neuro thinks Rituxan could work for you, I wouldn’t hesitate to try it. You might get some side effects, but they are comparatively mild in comparison to the positive effect it could have. Rituxan combined with another chemo (Fludarabin) has worked wonders for me, and in two years I have gone from having a painful wreck of a body to an 80% “normally” functioning person.

      I wish you all the luck in the world!

    • Anonymous
      July 20, 2007 at 12:57 pm

      Hi Kelly, Do you know what kind of antiMAG you have, IgM or IgG? I got copies of most of my medical records. One of them shows the results of the blood test for antiMAG IgM. The number is quite high and there is no question that this is what I have. I don’t understand that your neuro questions the dx unless he/she does not have results of a test if it actually has been done or the results were inconclusive. It is a special test most labs cannot do. Mine was done at Washington University in St. Louis at the neuromuscular department. It is headed by Dr. Pestronk, an expert in the field who has published about treatments with Rituxan. I just noticed that you live in St. Louis. It shouldn’t have been a problem to have the test done right there.

      Here is what the oncologist I saw last year explained to me. AntiMAG neuropathy is caused by B-cells that don’t expire after their normal life span like they should. Usually this doesn’t matter that much except in our case they keep cranking out antibodies that attack our own MAG which in turn damages the myelin. Rituxan attaches to any of the different B-cells including the bad ones and reduces their number. Whether Rituxan just helps temporarily or actually gets rid of the bad B-cells for good – and this is [B]his[/B] theory – depends on where the B-cells become “bad” (immortal), inside the bone marrow or after they enter the bloodstream. If this happens inside the bone marrow, they’ll keep coming back and Rituxan only helps for a while. If they become bad only after they reach the bloodstream, Rituxan might actually help permanently. Of course – and this is my theory – it might be a combination of both scenarios, some go bad inside the bone marrow, some go bad outside. Rituxan again would only help temporarily.

    • Anonymous
      July 21, 2007 at 1:34 am

      Hi Kelly,

      Rituxan is a treatment for the AntiMag. I tried Rituxan infusions to see if they would work for me, but they didn’t, probably because so far I do not have the Anti Mag form. When I did try the Rituxan treatments I had no side effects at all, and I would not personally hesitate to try it. Unfortunally you have to play around with medications to see what works for you, because what does not work for someone else may work for you. I don’t think you have anything to loose by trying it.


    • Anonymous
      July 22, 2007 at 4:56 pm

      After seeing my new neurologist, she says not only do I not have antiMag, even though the antibodies were present, she feels that whatever neuropathy I do have, is a mystery. She is doing more blood work and I will continue getting my treatments while she’s searching for what I could have, but she’s just not sure now. I left there and just cried. I feel like we’re back at square one and it was nice to have a name for something, even though I didn’t really understand it, a name at least said I am not going nuts.


    • Anonymous
      July 23, 2007 at 9:14 pm

      Hang in there Kelly. You have our support while your dr. tries to figure it all out. Not knowing what is wrong is awful and it is hard to be patient. So many neurological problems have similar symptoms. Come here to vent when you must and let us know what you find out!

    • Anonymous
      July 24, 2007 at 11:44 pm

      I am not an antiMag person,I’m CIDP. But my prayers are for you during this difficult time of not knowing. Put your trust in the Lord , and follow what the doctor orders for you. And keep us posted from time to time.
      Mary Ann