CIDP – HSCT Clinical Trial, Dr. Burt Chicago

This topic contains 14 replies, has 11 voices, and was last updated by  ChicagoCIDP 4 weeks ago.

Viewing 15 posts - 1 through 15 (of 15 total)
  • Author
    Posts
  • #111180

    BridgeB
    Participant

    Hi, Been dealing with CIDP for a little over 5 years. So many treatments, would feel like writing a book to describe everything tried and everything that’s happened to me. Don’t want to do that. I recently was evaluated and accepted into the HSCT clinical trial being done by Dr. Burt at Northwestern in Chicago; stem cell transplant using your own stem cells. Though I’ve been accepted, insurance denied and working on fighting the battle to get this treatment. I am IVIG dependent & and get regular solu-medrol (steroid)…weekly routine I certainly am hoping one day to leave behind. Speaking to others that have undergone this treatment, there is new hope for us CIDP-ers.

    #111181

    Jim-LA
    Participant

    I was essentially accepted into the SCT trial in Seattle but Medicare disallowed it. More details are here:
    https://forum.gbs-cidp.org/topic/sct/

    You might want to look into Rituxan as an alternative treatment while you are trying to get HSCT funded. Some info about it is here:
    https://forum.gbs-cidp.org/topic/anemia-due-to-cidp/page/2/

    #111182

    BridgeB
    Participant

    Thank you Jim-LA. Sorry Medicare disallowed it for you. Heard recently some were being allowed and had an out of pocket of about $2500. Know all of us respond different to treatment options, our CIDP experiences can differ too, besides all the insurance hurdles/denials that happen.

    #111448

    Marty Lemons
    Member

    My Neurologist said if this really worked, it would be featured on the front cover of Neurology Today magazine.

    #111452

    GH
    Participant

    Marty, it is still in trials so may not be ready for publication. Some patients have reported success on this site.

    #111463

    John Masi
    Member

    My neurologist asked me if I would consider being in a trial. He had to check and see if I fit the criteria. He stated that there would be no costs associated with the trial and they would pay me travel expenses. A trial typically means that someone has funding (e.g NIH) to perform the trial and collect and process the data. I don’t understand why costs are associated in the comments above.

    #111465

    jk
    Participant

    Because the Clinical Trial conducted by Dr. Burt in Chicago does not pay the participant(s) expenses.

    #112673

    chirpybirdy
    Participant

    I was thinking about applying for the SCT program. I emailed them and they sent me the patient intake package. I have had CIDP for 6 years now. I tried Pred and it made me miserable. I have been on IVIG now every 4-5 weeks and i do really good on IVIG but i can’t stop it. If i stop my symptoms come right back so I am still have active CIDP. The criteria is that you have tried two drugs and failed to stop progression. So I think I fall under that category. I discussed the program with my current neurologist and he said he thinks that I should not go through with it at this time. He knows a lot about the program because he is one of the doctors that works on the program at Northwestern. Anyway, he said that it is such a drastic approach to treat CIDP that he thinks since I am doing ok on IVIG that I should stay my course. He said that he evaluates patients and thinks it should be used only for patients that are at the end of trying everything and are very sick. I disagree a bit. I think maybe I should do it now while I am still healthy so that I don’t progress to be that sick. Why wait until i have nerve and axon damage and then try and put my CIDP into remission. By then I will be miserable. I would rather go through a horrible, grueling procedure for a few weeks and then be done with infusions and meds. Maybe my life would go back to normal and I would not progress to being wheelchair bound or having to use a cane. But he still thinks I should not do it at this point. Too many risks involved. Has anyone else had the SCT and were not extremely sick but had active CIDP? Was it worth it? My neurologist said that some of the people go through the treatment and then regress and have CIDP again. Most people that post blogs are successful and did not regress but there are patients that go through it and regress. I did a lot of reading on SCT and I see some risks but more benefits than risk. I have shelved this for now but it is still in the back of my mind. I would like to explore it more. Any comments would help.

    #112677

    Jim-LA
    Participant

    Hi Chirpy, glad to see you active here again, you always have insightful commentary!

    You may wish to review the following thread and add some of what you have learned to share with the rest of us:
    https://forum.gbs-cidp.org/topic/sct

    #112691

    MarkEns
    Participant

    Chirpybirdy,

    As I read your description, it seems that you did not fail two drugs. You said IVIg keeps things in check, which would generally be called a success. As it is working, you probably are suffering very little axon damage, and the damage to the myelin is likely minimal too. Yes, it is a drag to be on IVIg, but at least it works. You seem to be concerned about having to use assistance; I am too. Are you noticing increasing deficits at the end of your cycle? If so, then you might consider IVIg either more often or in a bigger dose. Yes, it’s even more of a drag, but more IVIg might prevent any significant decline.

    Be that as it may, another reason to consider delaying HSCT is to allow for refinement in the technique. I was reading the other day of a man with MS in the UK who did HSCT. His disease progression was severe and nothing was helping. That is why he did HSCT. It worked miraculously for him. However, after 5 1/2 years, his symptoms came back and are now pretty bad. Did it give him 5 good years, essentially resetting the clock? Yes, it did. But, given the damage done by the chemotherapy, it is doubtful is he can ever do HSCT again. So unless some new MS come along, he will only get worse. If your CIDP is reasonably well controlled, it might be a good idea to wait a few years for the process to get better.

    If your doctor is working with Northwestern and is advising against it, my guess is that you would not meet the acceptance criterion.

    I know I have been pretty negative about HSCT in the post. In general, I think it is a great idea, but it is still a more a last-resort option than a go-to one. Still, you know you best, so if you see thing that convince you that IVIg is not effective, go for it.

    Godspeed in your decision,
    MarkEns

    #112986

    Finbarr
    Participant

    I am about to hit the 3 month mark of my “re-booted” immune system. After 4 years of dealing with CIDP, I am very glad I went to Northwestern. My Neurologist was against it. IVIG worked for me, it in combination with Prednisone and Solumedrol kept me almost normal. But the occasional fight with insurance and a missed or delayed dose would bring back my symptoms quickly. I decided a year and one half ago I was going to do the trial. I had been accepted the previous November and after attending a large work event caught a nasty bug and the insurance company at the same time did not approve my IVIG dose, I ended up in the hospital for 4 days unable to walk. It only took 10 days from fully capable to unable to get out of bed on my own power. I agree the treatment will continue to get better and there is some risk in having chemotherapy in your body but I am off Prednisone and Solumedrol, I have the 4-5 hours back every two weeks that I had to sit and have an infusion. Dr. Burt plans on publishing this year so hopefully that will open up the insurance companies to approving more patients. I believe his success rate with CIDP patients is very high and if he accepts you it is because he thinks he can help you. It is a very personal choice but my only regret is I didn’t do it sooner.

    Good luck to all,

    Finbarr

    #113860

    kostaskavas
    Participant

    Finbarr,

    How are you doing after your HSCT? Since I came across this forum, I’ve been interested in pursuing. My CIDPO continues to get worse after IVIG, Prednisolone, sand Plasma Exchange. The bi-weekly IVIG keeps the neuropathy at bay, for the most part, but I continue to get worse over time. at 37, I feel I can fight this fight and live a more normal life and would be curious to see how everyone is doing who has tried it. I plan to reach out to the team at Northwestern to apply and learn more to ultimately see if its right for me. I’ve read the requirements and feel like I’d be a perfect candidate if all roads lead me to that decision.

    #116378

    ChicagoCIDP
    Participant

    Has anyone here who has gone through HSCT have an update?? I have been recently diagnosed and want to take aggressive action. Been on Prednisone for 5 weeks, better for the most part but I can tell it isn’t shut down completely. Also just started taking Cellcept. From my understanding, this is something I’ll have to take forever! Not a fan of how this is looking to play out and want to rest my immune system!

    Any commentary would be greatly appreciated!

    #116380

    Jim-LA
    Participant

    Dr Burt’s clinical trial has been ongoing since 2006. He made some updates last month, but has not posted any results. You can view the latest here:
    https://clinicaltrials.gov/ct2/show/NCT00278629

    Dr George’s clinical trial from 2008 is still recruiting and has a planned completion the end of 2021. You can view the status here:
    https://clinicaltrials.gov/ct2/show/NCT00716066

    Dr Burt has a website with some updates, but the updates are not necessarily proven scientific fact as far as I can tell: https://www.stemcellresearchfacts.org

    #116381

    ChicagoCIDP
    Participant

    Thank you for the reply Jim!

Viewing 15 posts - 1 through 15 (of 15 total)

You must be logged in to reply to this topic.