Need help with treatment decisions

    • Anonymous
      January 6, 2008 at 1:14 am

      We really need some input from forum members concerning treatment issues for my husband who has CIDP-MADSAM Lewis Sumner Variant. We live in Canada so that is a big factor in my story. My husband has been doing very well on IVIG since he was diagnosed in July of 2007. He has regained significant use of his right hand since starting IVIG, and he has had no more episodes of foot drop.

      It seems that in Canada the amount and frequency of IVIG treatment is determined by guidelines set forth by the government. Doctors are encouraged to get their patients onto drugs other than IVIG as soon as possible, and then IVIG is only used for flare ups.

      In December, my husband’s neurologist started him on Imuran. Within 2 weeks, he was in hospital with chills and high fever. The ER said he was developing sepsis due to the Imuran. Another doctor said that he had an underlying infection which developed due to his immune system being shut down by the Imuran. My husband has not taken Imuran since the hospitalization in mid-December.

      The neurologist wants him to “re-challenge” the Imuran starting with baby doses and she will monitor him carefully. If he reacts again, she will put him on cellcept.

      I feel that both the Imuran and Cellcept are cytotoxic drugs with mega potentially life threatening side effects. He has to be careful not to be around people with infections, has to try not to cut himself, be careful with dental flossing etc. And then if he gets an infection, he has to see a doctor asap. In effect, he alters his whole life-style to be on one of those drugs. Is my impression about those drugs correct? And I also think that he would have to stay on them for years/indefinitely which would increase his risk of developing things like cancer.

      If I am correct in my impressions, is it unreasonable for him to tell his doctor that he refuses to take either of those drugs and that he wants to carry on with IVIG? Even though our government has set these restrictive guidelines on the use of IVIG, I would like to buck the system and demand that he stay on the drug that is helping him. My husband says if he says that she will likely refuse to treat him saying that she has to follow the government guidelines on IVIG administration. I said I don’t think she can do that, and that she would likely have to treat him anyway and that she couldn’t deny him the drug that he is willing to take. And in effect she would have to support him in this decision.

      I really need some input here. I don’t know if I am being over reactive about him going on these other drugs. I know I am still stressed over the Imuran episode at Christmas, and I am highly negative about him going back on it or even trying the Cellcept. But in a nutshell I think he has the right to stay on IVIG since it works and has much less in the way of side effects. Any Canadian CIDP’ers out there with any advice please.

    • January 6, 2008 at 10:46 am

      I just fought this battle with Kevin’s neuro. Kevin is doing remarkable on ivig and he wanted to try cell cept. I pulled up several abstracts proving the benefits if ivig over cell cept as well as horrendous side effects. Also, interestingly, I also pulled up an abstract that said while short term, ivig is not cost effective, longterm, compared to all of the complications and side affects due to cell cept, ivig is more affective long term than any other form of treatment. IF, ivig is not working, of course cell cept/imuron have to be explored. but ivig is always the first line of defense. I also have some abstracts that prove ivig as immunosuppressants work as modulators of auto antibodies.

      SOOOO….. I do not think it is unreasonable to refuse the cell cept. I do not know the laws and limitations of canada’s medical plans, but it cannot hurt to try and state your case. You can pm me a fax # and I will try to fax info to you w/ all of the abstracts. Good luck in your quest to fight for what you believe in!

      Dawn Kevies mom

    • January 6, 2008 at 10:51 am

      Maybe you can Contact Rhonda, or Suewaters1, they are from Canada, there are a few more, but the names escape me at present.

    • Anonymous
      January 6, 2008 at 11:49 am

      Hi Dawn,
      I just sent you a private email. Thanks for your offer of help. My husband had a relapse after his episode with the Imuran and was in the hospital so I can indeed see that over the long term IVIG would be cheaper if people wind up in hospital after taking those cytotoxic drugs.