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Thread: Ore. man gets results from stem cell transplant

  1. #11
    It appears CIDP does relapse or maybe this site is not correct.
    http://www.ninds.nih.gov/disorders/cidp/cidp.htm

  2. #12
    Unfortunately most CIDP sites found by googling are very outdated. And they quote one another ad lib.

    Generally speaking 70% CIDP are progressive. Most of the rest start out remitting/relapsing or waxing/waning before eventually turning into the progressive form. A lucky few may enter spontaneous remission, but most of those are children.

    Usually the ones seeking HSCT are the ones who now have a progressive course and refractory disease.

    It is a little understood disease. Some do very well (live almost a normal life) with minimal medication. Others go straight to a ventilator within a year.
    Last edited by CIDP_LEMS; 08-10-2014 at 04:36 AM.

  3. #13
    The site was updated April 2014 and has a link to clinical trials. Not sure if they are of interest to you. I have seen Gullain-Barre over the years and most responds well to the initial treatment. Several have had episodes where it returned with a vengence.

    Quote Originally Posted by CIDP_LEMS View Post
    Unfortunately most CIDP sites found by googling are very outdated. And they quote one another ad lib.

    Generally speaking 70% CIDP are progressive. Most of the rest start out remitting/relapsing or waxing/waning before eventually turning into the progressive form. A lucky few may enter spontaneous remission, but most of those are children.

    Usually the ones seeking HSCT are the ones who now have a progressive course and refractory disease.

    It is a little understood disease. Some do very well (live almost a normal life) with minimal medication. Others go straight to a ventilator within a year.

  4. #14
    GBS is different from CIDP in that CIDP is chronic. GBS attacks once and then it stops. CIDP is closer to MS. The autoimmune attack is on going so the primary need is to stop the attack first. Then there comes the healing.

    Thank you for the article. I have seen this page before. I have pretty read just about any CIDP literature I can find. Most of them are not new or updated per se, if you know what I mean. They just repeat the old stuff. Sad truth when it is a rare condition.

    there are and have been many clinical trials for CIDP before. A few are piggyback off MS trials. Unfortunately most are at a dead end.

    But I do have hope the autologous stem cells transplant will stop the autoimmune attack. Which will essentially make me a GBS sufferer, not CIDP. GBS can slowly heal. Hope it makes sense.

    I am checked in the hospital right as we speak. Let's see what happens. I will let you know if the attacks stop or not. It will take a few months to up to a year to tell.

    Final word, Damn flu shot. Lol
    Last edited by CIDP_LEMS; 08-10-2014 at 01:13 PM.

  5. #15
    Btw, these are the clinical trials I am talking about. My insurance is paying for it. $125,000. Which is reassuring in a way. Insurance companies usually don't like to pay for expensive elective procedures unless they believe in it.

    It is a phase 2/3 clinical trial in Northwestern University in Chicago, by Dr Richard Burt. The success rate is 80 to 90% I was told. But the official data won't be out until 2015. So don't quote me. Lol. There is a Facebook group about it too, saying this treatment for RRMS is expected to go mainstream around 2022 to 2024 optimistically speaking. Unless fast tracked.


    For my disease CIDP: still in phase 2, so no randomization. I will get the full treatment.


    http://clinicaltrials.gov/show/NCT00278629


    For MS: phase 3, you run the risk of being in the control arm. Sort of Double blind.


    http://clinicaltrials.gov/show/NCT00273364

  6. #16
    Best wishes for success

    Quote Originally Posted by CIDP_LEMS View Post
    Btw, these are the clinical trials I am talking about. My insurance is paying for it. $125,000. Which is reassuring in a way. Insurance companies usually don't like to pay for expensive elective procedures unless they believe in it.

    It is a phase 2/3 clinical trial in Northwestern University in Chicago, by Dr Richard Burt. The success rate is 80 to 90% I was told. But the official data won't be out until 2015. So don't quote me. Lol. There is a Facebook group about it too, saying this treatment for RRMS is expected to go mainstream around 2022 to 2024 optimistically speaking. Unless fast tracked.


    For my disease CIDP: still in phase 2, so no randomization. I will get the full treatment.


    http://clinicaltrials.gov/show/NCT00278629


    For MS: phase 3, you run the risk of being in the control arm. Sort of Double blind.


    http://clinicaltrials.gov/show/NCT00273364

  7. #17
    Thank you, c473s. I know I am a lab rat in a way. All in the name of science and progress.

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