September 23, 2019 at 3:45 pm #117155
Has anyone here discussed total stem cell replacement for CIDP with your neurologist? I know it’s seen as a cure — stops the disease completely — but I also know Medicare and most other insurance won’t cover it for CIDP. Medicare covers it for leukemia treatment. The cost, from what I’ve read, is $125,000 to $150,000 or more, and not many hospitals in the US are equipped to do the procedure, which requires destroying the patient’s bone marrow in a sterile environment before injecting new stem cells. I’ve encountered a couple of people in support groups who seem to think all CIDP patients should be having this done NOW, and they’re giving people the idea that it’s an easy cure and easy to get. After looking into it, I know that’s not true. But I wonder if any of you have discussed total stem cell replacement (not just stem cell treatment) with your doctors and insurance companies. Is it something you would consider if you had to pay all or most of the cost out of pocket?September 23, 2019 at 3:48 pm #117156
I should add that this treatment doesn’t repair any nerve damage you’ve already suffered. It only stops the progress of the disease so that you no longer need treatment of any kind.September 26, 2019 at 10:40 am #117164
I have looked into the STEM Cell treatment. I was in contact with the Hospital in Chicago where the research is being done. I was thinking about applying and got all the necessary forms. But after more research I decided it was not for me at this time. My current neurologist at the U of MN was one of the doctors who worked on the research at the hospital in Chicago. He talked me out of the therapy at this time. He said that it is really grueling and hard on your body in so many ways. They use high doses of chemotherapy drugs to kill off all of your immune system. He said there is not enough evidence that long-term your immune system won’t just go back to attacking. He also said a lot of people have the CIDP cured but end up with a whole host of bad side effects from the STEM cell treatment drugs. So he said he wouldn’t do it unless your disease was so bad and you had no other options. I am hoping with more research they will find ways to make the therapy safer in the future.September 26, 2019 at 11:11 pm #117167
I realize it works for some but at a local CIDP seminar a couple of tears ago, 2 of the core presnters said to not do stem cells…it can kill you.September 28, 2019 at 6:50 pm #117172
I’ve read that some people have relapsed after a period of time. And yes, it is a grueling process. I’ve also read that doctors prefer to do it in younger, otherwise healthy patients because of the dangers involved. I would definitely not be a candidate.
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