New experimental drug for Autonomic Attack on top of CIDP, & also Stem Cell Research

    • Anonymous
      October 3, 2006 at 2:05 am

      Below is an email I sent to DavidBod, (Dr.Dave).
      I don’t know if many of you remember, but some on the site had replied to my request, about if any had heard of something that could be used for autonomic neuropathy, (small fiber atrophy), on top of CIDP.
      Well, my neurologist is going to try an experimental drug for CIDP, on me.
      I also want to let people know about that stem cell research with CIDP, going on in Chicago, that it is not a government sposored research, in that each patient would have to cover all costs, or insurance companies would, {yeah, right}.
      Hope this info helps anyone interested, and I will advise to any or all, my responses to this drug, once I start on it. My insurance just approved it, and I have to get a blood test tomorrow first, before starting it.
      Ta ta for now…
      KEDASO

      Hi David,
      Thank you for your repsonses. It looks like my original post on the small fiber neuropathy (autonomic attack) on top of the CIDP, was wiped out when the site went down.
      But, I remember you said you were curious, as to which after-kidney-transplant drug was going to be used for the attack on the autonomic system.
      Well, it looks like my insurance company approved it, even though it is being used as an experimental use for this problem. The name is “CellCept”. I have just been reading about the med, and all it’s side effects. He wants me to have constant bloodwork, to keep watch on the drug. Have you tried this one yet?

      Also,
      I have since been in contact with the people at Northwestern University School of Medicine, the people doing the stem cell research on C.I.D.P.
      Being that it was a government study being done, I was under the assumption that the costs would be covered by the government.
      Silly me!
      It turns out, that each patient has to cover all costs involved. And since insurance companies don’t like to play with experimental stuff, I wonder how many apply to the insurance companies, and get turned down. And who would be able to cover these atronomical costs for the procedure, if the insurance companies decline–only the wealthy…
      But, I thought I would let you, as well as everybody else on the site, know about this new technology.
      Hope things are going well for you, though it’s doesn’t sound like your having fun.
      KEDASO
      (KEn DAvid SOden)

      Hi Ken,
      Unfortunately, there is no government funding for this study.
      Our division has treated over 170 people with refractory autoimmune
      diseases, but only one CIDP.
      I am attaching more information, if you are interested in coming to
      Chicago for evaluation, please complete the forms and send the requested
      medical records.
      You do not need to try and fail chemotherapy for CIDP.
      Let me know if you have any questions,

      Kim
      312-503-1435

      —–Original Message—–
      From: Ken Soden [mailto:vip-tvlrs@vip-tvlrs.algxmail.com]
      Sent: Monday, October 02, 2006 10:15 AM
      To: Yaung, Kimberly
      Cc: Ken Soden
      Subject: Re: NCT00278629, NU FDA CIDP.AUTO2003: – Hematopoietic Stem
      Cell Support in Chronic Inflammatory Demyelinating Polyneuropathy

      Dear Kimberly,
      I thought, being that it was a government sponsored trial, that it, (the

      stem cell transplant), would be covered by the program. Please do let
      me
      know on this, so I can mention this on the “C.I.D.P. Foundation”
      Website.
      We are all watching this study!
      I currently have C.I.D.P. with Lewis-Summers variant; with small fiber
      atrophy, (autonomic neuropathy); with Horner’s Syndrome. I have failed
      with
      the high-dose steroids, and I have failed with IVIg. I am currently on
      plasmaphereses, of which it is helping my seral and motor nerves, but
      NOT
      the attack on the autonomic system. I have not had a full meal in 26
      days.
      It is ravaging the autonomic system, and I keep getting put on meds for
      each
      problem. My current problem, is that I cannot swallow well. My neuro.
      is
      waiting to use chemotx until last resort.
      Thank you for your reply.
      Ken
      —– Original Message —–
      From: “Yaung, Kimberly”
      To:
      Cc:
      Sent: Monday, October 02, 2006 7:37 AM
      Subject: FW: NCT00278629, NU FDA CIDP.AUTO2003: – Hematopoietic Stem
      Cell
      Support in Chronic Inflammatory Demyelinating Polyneuropathy

      Dear Mr. Soden,
      I am one of the transplant coordinators at Northwestern and had your
      email forwarded to me.
      We have had one person who had stem cell transplant for CIDP. There are
      two others awaiting insurance approval.
      Feel free to call me if you have any other questions.

      Thank you,

      Kimberly Yaung
      Clinical Nurse Research Coordinator
      Northwestern University School of Medicine
      Division of Immune Therapy and Autoimmune Diseases
      750 North Lake Shore Drive, suite 649
      Chicago, Illinois 60611
      312-503-1435 (O)
      312-908-0064 (F)
      312-695-7313 (P)

      ==============Original message text===============
      From: “Ken Soden”
      Date: Fri, 29 Sep 2006 10:44:01 am +0100
      Subject: NCT00278629, NU FDA CIDP.AUTO2003: – Hematopoietic Stem Cell
      Support in Chronic
      Inflammatory Demyelinating Polyneuropathy

      I would be a cadidate, but how many do you have recruited so far?
      Ken Soden
      Oceanside, CA
      ===========End of original message text===========

    • Anonymous
      October 3, 2006 at 5:16 am

      Ken, cellcept (mycophenolate) is not really experimental for CIDP. It is part of the normal armamentarium. I took it for about 6 months with no ill efects routine bloods are to detect early unwanted changes which reverse when the drug is stopped. I kmow many people who take it for a year following renal transplant where it is almost standard treatment. DocDavid

    • Anonymous
      October 3, 2006 at 6:28 am

      [QUOTE=DavidBod]Ken, cellcept (mycophenolate) is not really experimental for CIDP. It is part of the normal armamentarium. I took it for about 6 months with no ill efects routine bloods are to detect early unwanted changes which reverse when the drug is stopped. I kmow many people who take it for a year following renal transplant where it is almost standard treatment. DocDavid[/QUOTE]
      Hi DocDavid,
      But did it help you at all?
      -KEDASO

    • Anonymous
      October 4, 2006 at 4:48 am

      Kedaso, no but it has helped others. I was stabilised by Rituxan used as a last resort. In order to promote its use I wrote it up in ‘Practical Neurology’ a neurological periodical. DocDavid

    • Anonymous
      October 4, 2006 at 6:40 pm

      Ken,

      I have been taking Cellcept 1000mg 2xs per day since Nov. 2005. I also get IVIG every 30 days. I am functioning well. I agree with Doc David, it seems to be somewhat standard treatment for CIDP to prescribe an immunosuppresant drug like Cellcept or Imuran. Cellcept is newer and has less side effects, so it is more expensive. Some insurance companies do not approve it so people take Imuran. The immunosuppressant drugs can take 3 to 6 months to have there full effect appreciated.

      Hope it works well for you!

      Pam K

    • Anonymous
      October 15, 2006 at 4:56 pm

      I just started taking Cellcept after being on the IVIG every three weeks for over a year. My doctor finally agreed to send me to the Cleveland Clinic in August where I was finally diagnosed with CIDP. The neuorologist there recommended the Cellcept. He said after 3-4 months we would start to wean me off the IVIG with the hope of getting off the IVIG. He said I would probably have to take the Cellcept for the rest of my life. Have they tried to wean you off the IVIG or do they think you will continue to need to get it?
      Dennis