Home Forums General Discussion There is hope!

This topic contains 1 reply, has 2 voices, and was last updated by  Lynne G.SD 2 years, 7 months ago.

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  • #308683
    JustDiagnosedChris
    Participant

    I am so glad I found all you guys! It was truly a God send. I had really bad heart problems since I was about 15 and they’re finally gone!!! But I realize deep down I won’t be able to use AP forever, I think it will end up having complications with my body that outweigh the SD. But the good news is, I think I will probably be able to stay on MINO long enough until some different treatments come out. I’ve already been in contact with a couple people who got put into permanent remission with adult stem cell therapy (I was blown away that I hadn’t been told a thing about it!), and then, there’s also a compound waiting on approval for clinical trials at the University of Michigan that reverses SD fibrosis in human tissue and in lab mice. I realize this forum is supposed to only discuss the antibiotic protocol for rheumatic disease, but seeing as eventually I think we would all agree that, if something even better should come along, we would want to take that route instead. I can’t say how thankful I am to roadback.org though, it ACTUALLY saved my life. A special thanks to all of the volunteers and admin here who reach out to people with so much love and selflessness. I am so indebted to you all. Thank you.

    I have my next appoint Dr. F. in a little over 2 weeks, so I’ll be hearing the latest updates on my labs, hoping they will be good.

    #374735
    Lynne G.SD
    Participant

    Hi Chris;
    If you go to the SD foundation’s Inspire site you will find a lot of info about Stem cell therapy.It’s biggest drawback are the cost(over 200,00$ and a death rate of 6%.On top of that they won’t look at you if there is anything wrong with the heart or if you are not sick enough.There is also a Facebook group but I never looked at it but I hear it can give you a lot more information as only people who have been on this therapy or are planning it are in the group.
    The research being done at MSU is about 10 years down the road and looks like just an other immune suppressant from what I have read.I keep my eyes wide open and read ALL info on expected therapies.For now the best is IVIG and Photopheresis that have had amazing results but you have to stay on it and it is very costly.Insurances will always try to not pay for anything expensive so it is best to talk to them before even looking at these therapies

    #374736
    Lynne G.SD
    Participant

    Hi Chris;
    In my rush to do other things I forgot to mention that this research only centers on fibrosis and we already have mino that does exactly that so I don’t see that this new med,if it ever happens,will be any better than what we already have.

    #374737
    Lynne G.SD
    Participant

    Hi Chris;
    have you read the Scleroderma Education Project written by Ed. Harris? He wrote the original FAQ for the SDF many years ago and has all the updated info on this site.
    this is of particular interest
    http://sclerodermainfo.org/wp-content/uploads/Hyperviscosity-Technical-Article-US.pdf

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