IVIG study published in Canada

    • August 31, 2010 at 11:40 am

      The article below was just published today in Open Medicine (it’s an online journal started by the former editorial board of the Canadian Medical Association Journal) on IVIG for treatment of CIDP. It essentially says that IVIG is superior to placebo, but no evidence to suggest it’s better than oral prednisolone or plasma exchange.

      Here is the link to the article. This may not be good news for those of us in Canada attempting to get IVIG treatment paid by the government health plans..


      Kathy From Ottawa, Ont Canada

    • August 31, 2010 at 12:13 pm

      Is it possible they publish such articles to in fact “make” it more difficult for patients to get ivig? Maybe they are trying to start a paper trail to justify the substitution of ivig with pred based on their publication? I pray that it will not make things difficult for those in need. Best wishes. Every day I wonder if it will be our last day on ivig. It is not bad enough having to wake up every day and wonder if there is some new symptom or pain. Now on both sides of the pond we have to worry about our life sustaining treatments being taken away. I am continuing to try to go on 1 day at a time. It is getting harder!

    • Anonymous
      August 31, 2010 at 9:52 pm

      The last few times I’ve seen my neuro he was greatly concerned about his patients getting the medications they direly needed. He even used the word “threatening” as being used in the letters he’s received from insurance–reimbursement companies.The immense paper work to validate each and every step for one patient to even receive the most basic of necessary services.

      I know IVIG is expensive and since my State Employee coverage started demanding cost lowering of “Specialty Drugs ie IVIG”–my IVIG supplier drug company cut the charge in HALF. So they were making 200% off of me and at this price now still making a profit.Think this will continue and does make sense to somewhat control medicine costs. Medicare was paying $ 2,200.00 for 50 grams of IVIG and my specialty drug supplier was charging $ 10,000.00 for the same amount in 2008.Every insurance coverage differs but this is just an example that happened to me.

      We need existing documented medical evidence in our neurologists files that IVIG does the best of the three to control, improve and best all around for each of us CIDPers on it to continue getting it.

    • GAT
      September 1, 2010 at 9:37 pm

      I think most of us realize that similar can happen here with the new health care bill. My hope is someone would realize that those affected may know best. My hope is a strong response to the survey that was sent out by this foundation and the documentation of success will be used appropreatly. I had my IVIG this afternoon and know how much it does for me and how I look forward to it as the relief I get. My Neuro told me she won’t want to take steriods unless absolutely necessary and doesn’t want it for me. This said. Thank you GBS/CIDP foundation for you efforts in what you do.