Why not MS drugs for CIDP??

    • Anonymous
      December 2, 2006 at 12:03 pm

      Just curious as to why can’t MS drugs be used for us. I know MS is in the central nervous system and CIDP is not but both are affected by the demyelinating process of T-cells attacking. I guess my frustration is they can take their’s at home (injections) and we have to go to IVIG for hours many times of the week/month.

      Im curious if any clinical trials have been done with MS drugs (avonex,betaseron,copaxone,tysabri etc..) on CIDP… Maybe doc david can relate or anyone else with thoughts on this…

      thanks ericc !

    • Anonymous
      December 3, 2006 at 2:44 am

      There is at least one paper reporting a clinical trial of interferon beta-1 (avonex) on neurology.org. My understanding is that the success rate of interferon and the cost compared to other treatment options make it somewhat unattractive for CIDP. Maybe after a few more studies are completed this will change — for now there are only the treatments for which a body of research exists, in spite of the fact that other immunomodulators and anti-inflammatories may be effective.

      I don’t know about the other drugs — maybe someone else who better knows what they are talking about can fill that gap.

    • Anonymous
      December 3, 2006 at 7:52 am

      Here is information from Wurzburg Germany.

      The pathogenesis of CIDP
      Rationale for treatment with immunomodulatory agents
      Klaus V. Toyka, MD and Ralf Gold, MD
      From the Department of Neurology, Clinical Research Unit for Multiple Sclerosis and Neuroimmunology, Julius-Maximilians University, Würzburg, Germany.

      Address correspondence and reprint requests to Dr. Klaus V. Toyka, Department of Neurology, Julius-Maximilians University, Josef-Schneider-Strasse 11, D-97080 Würzburg, Germany; e-mail: [email]kv.toyka@mail.uni-wuerzburg.de[/email]

      Current knowledge about the pathogenic mechanisms involved in chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) supports an autoimmune etiology. Some of the cell and humorally mediated immune responses that contribute to the development of CIDP resemble those implicated in multiple sclerosis (MS). The effector role of circulating antibodies has recently been revisited. In addition, similar to the situation in MS, histopathologic studies support the heterogeneity of disease mechanisms in CIDP, with variants showing axon damage. In addition to intravenous immunoglobulin (IVIg), prednisone, and plasma exchange, immunomodulatory drugs also were used to treat CIDP, although no definitive trial data are available. One class of immunomodulators, interferon beta formulations, has proven efficacy in the treatment of MS, and because of clinical similarities between the two diseases it is attractive to investigate whether some agents that are effective in the treatment of MS would also be effective in CIDP. Preliminary studies have evaluated the effects of interferon beta formulations in the treatment of CIDP, one of which has shown promising results and warrants further investigation.

    • Anonymous
      December 3, 2006 at 4:13 pm

      Keith and Jfitzen….thanks for the info on these trials and also the neurology.org site. Its good to see someone(s) (researchers) is thinking outside the box a little on the simularities of our diseases…

      take care!!…..ericc..

    • Anonymous
      December 4, 2006 at 11:11 am


      I was taking the Avonex injection for my CIDP. My pcp said it was worth a try so I agreed. I started the Avonex ($1500 for one month supply) in September of 2005. Luckily my insurance covered it, except for the co-pay. Prior to this I was in the hospital every 4-5 months with relapses, getting 5 days of IVIG. It was after the third time that we decided to try Avonex.

      The upside of the Avonex is that it did seem to work. I did not have another episode for 9 months.

      The down side is the side effects are terrible. It is like having a very bad case of the flu. Body aches, chills, headache, nausea. I took the shot on Friday night and was sick all weekend. One of the side effects is that it can affect your kidneys, I ended up with a bad kidney infection. I honestly do not think the side effects make it worth taking, but everyone is different.

      The other thing is that when I did have another attack in June 2006, it was sooo much worse than ever before. I went from fine to on a vent within 45 minutes. I cant honestly say it was worse from the Avonex, but I think of it as a pressure cooker. The Avonex kept it at bay for longer, but when it blew it really blew.

      Everyone has their opinion, but after weighting the pros & cons, I personally would not recommend Avonex.


    • Anonymous
      December 5, 2006 at 12:26 am


      I am happy that somebody is thinking outside the box as well. My fear regarding the medical community and finding a cure for CIDP or for that matter GBS is this: look at the incidence rate. 1 or 2 per 100,000. How many people are going to take this “cure” when,(or if) they ever find it. Compare that to the thousands of dollars we have to pay for treatment. which is better for the pharmaceutical companies?

      I guess I am a bit cynical today.

      The way we will get a cure is if they find a way to crack the code for one of the autoimmune diseases. Any of them. Once they figure out a way to rid the body of T-cells that attack self continuously, and self replicate, etc. we would have a chance. As it is, as long as one abberant T-cell remains following each relapse, there will be another.

      Have a great day

      Dick S

    • Anonymous
      December 5, 2006 at 11:27 am

      Eric, Dick,

      Yes, they are coming closer to cracking the code. See: [url]http://www.upi.com/NewsTrack/view.php?StoryID=20061204-111143-5372r[/url]
      (Finding the molecule responsible for autoimmune relapses)

      They are working on it from the angle of MS and AR because it affects such a large population, but further research shows they have been working on the “big picture”. See also:

      A search using [B]osteopontin autoimmune [/B]keywords in PubMed will provide you with specific studies pointing to similar actions of this cytokine across many chronic autoimmune illnesses.

      Peace on Earth, Goodwill towards Men.

    • Anonymous
      December 6, 2006 at 7:22 pm

      Damaged Nerves, Dick S and Compact Disk.. thanks guys for more info and your experience with avonex and other info as its good to see someone out there is at least trying….

      Take Care !! Ericc….

    • Anonymous
      December 10, 2006 at 8:49 pm

      My 17 year old son, with CIDP, has been injecting avonex weekly for 4 months now. He is still taking prednisone, but that is to be decreased soon.

      We were told by the neuro.to try avonex for a 6 month period and then we will reevaluate. Side effects, which had been severe (flu symptoms for 20 hours), have decreased substantially. He has found by altering the injection time, that has made a great deal of difference. He know injects himself at 3 p.m. on Friday after noons. Side effects are now minimal. If he gets the injection at night, side effects are severe again.

      The jury is still out on gaining benefits, but we will continue until we revisit the md. in Feb. IVIG monthly for one year did nothing. Cellcept did nothing. For now, we have hope.