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This topic contains 7 replies, has 0 voices, and was last updated by  gloria1960 3 years, 5 months ago.

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  • #7926

    gloria1960
    Member

    After reading everything I could regarding the cure for CIDP I am so happy there is a cure but I am extremely upset about the criteria you have to meet before receiving it. If there is a treatment for any disease it seems to me to be a huge waste of money. a lot of unnecessary pain and poor quality of life to make a patient try several treatments that they know will not cure the disease, all it can do is hopefully either put them into remission or ease their suffering when the doctors could offer them the cure from the onset and save all this money, time and pain. I have had CIDP since April 2005 but did not receive a diagnosis until July 2006. I have had no treatments whatsoever because I had absolutely no insurance coverage of any kind. I did not even have the steroid treatments. Now that I have Medicare that would at least pay for part of the treatments why would I want to go through all of that when there is an actual cure out there. This is crazy. I am about 90% better than I was at onset. But I still have to use a walker and wheelchair to get around. I can take a few steps but do to the foot drop it is easy for me to trip, which I did over a month ago and hit my head. I ended up with a black eye, some scrapes and bruises. I don’t just want to be in remission I want the cure. This just doesn’t seem fair to me and as I said before alot of unnecessary pain and expense.

    #98198

    exosurf
    Member

    Are you talking about the stem cell therapy as a cure? I don’t understand why one has to fail 2 protocols before one is qualified as a candidate. I think this SCT should be done early in the disease process before any more damage is done and the suffering we have to go through. IVIG, plasma pheresis are temporary treatments; corticosteriods are hard on the body; and all those chemo immunosuppressants are toxic too. This is just my opinion.

    #98199

    gloria1960
    Member

    Yes I was talking about the stem cell. I believe that as soon as a person is diagnosed with CIDP their first option should be the stem cell and let the patient decided if thats what they want to do.

    #98203

    jeanbell1
    Member

    Statistics??? anyone….survival rate??? cure rate??? I would really like to know.

    #98212

    Anonymous

    I may get blasted for this…but I’m going out on a limb here & hope we can all be civil…

    The stem cell transplant program is a trial right now. I believe it recently went to a stage 3 trial…there are 5 stages before a treatment can go for FDA approval.

    Because it is a trial there are no statistics being released. We can only know about the people who come here. I do not believe criteria has been set as to how to determine when a person is cured. We’ve had this argument here before & it didn’t go well but I will state again that I believe criteria needs to be placed on when a person is cured…such as with cancer. (I also want to add that I hope EVERYONE who has gone through the stem cell program is cured & will never have to deal with CIDP again)

    Also part of the process is to receive a VERY high dose of cytoxan…I want to watch what the long term effects of that are.

    Keep in mind that the stem cell transplant may not ever be the 1st line treatment for CIDP because people do go into remission with IVIG. We just don’t hear about them here because they are out living their lives. But studies do show that people can get off of all treatments.

    Gloria1960, I am very sorry to read that you have gone so long without getting any treatments. It’s just not acceptable that someone would have to suffer so long when there are treatments available.

    Again, I hope I don’t get blasted. I’m just stating my opinion.

    Kelly

    #98239

    Anastasia52
    Member

    I believe that stem cell transplantation will be the standard treatment/cure for CIDP as well as a host of other autoimmune diseases, when the studies are concluded and the data is in. Right now, stem cell transplantation is still in the clinical trial phase, and that means that, to prove its efficacy over other, standard, treatments, one must run the gauntlet of currently accepted protocols and fail each one.

    I understand that Dr. Burt is soon going to publish his findings on SCT for CIDP patients. Given the huge success of this protocol, Dr. Burt’s publication should go a long way toward persuading the medical community to accept SCT as the treatment of choice.

    Sharon

    #98243

    alice
    Member

    [FONT="Microsoft Sans Serif"]i agree with you sharon, well put.

    further, there are numerous among us stem cell transplant recipients for autoimmune conditions that are 10-12 years out with out any signs of illness–the vast majority in fact. that’s good enough for me. i think the analogy of cancer when it comes to cure criteria is not, in fact, analogous. if one studies the actual mechanism of action of the treatment protocol, i believe a better analogy would be the use of antibiotics for pneumonia — both use an agent to kill that which is causing disease and when it this is accomplished, that person is no more likely to get pneumonia than the next.

    the discussion of cure went poorly in the past not because of differing opinions, but rather because my personal cure was being disputed which is beyond opinion– i would no more accept a dispute about my being cured than i would dispute a disease process in another.

    and gloria– i do agree that one shouldn’t have to jump through so many hoops to obtain the treatment… this issue has often reminded me of the 80′s when folks were dying of aids and not allowed progressive new treatments because they had not made it through the lengthy fda process– meanwhile they were dying. well, most of us may not be dying– but awful disability is certainly horror enough, especially when at some point, damage is often irreversible.

    peace–[/FONT]

    #98251

    Anonymous

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