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    • #24133
      Dave Sabatelli
      Participant

      Yes pass this on.  My pulmonologist said “As far as I know this has only been demonstrated in mice.  No human studies have replicated this, and as such no actual medication exists that is FDA approved for use in IPF.”  My next visit is June 2 I will dig a little deeper with him.

      Thanks for your help

      dave

       

    • #24141

      Hi Dave,

      Will do — I’ll connect with the science writers about this, and see if they can produce a PF News article summarizing it. Stay tuned! Let us know what you find out from your June appointment with your physician, this article is definitely circulating various news/social media channels now. Thanks for sharing it.

      Charlene.

    • #24144

      Hi @alberto,

      Dave: turns out PF News did an article on this back in September per our science writers. Check it out:

      https://pulmonaryfibrosisnews.com/2019/09/30/blocking-il-11-reverses-lung-scarring-ipf-mice/

    • #24166
      joe hick
      Participant

      I guess my question is with this disease and the known eventuality why wouldn’t someone with advanced IPF be willing to  test some of these drugs. I know I would sign over any liability to anyone or Co. that was willing to use me, knowing I had little options.

    • #24172
      Mark Koziol
      Keymaster

      Hello Joe, thank you for commenting. Joe I have often wondered the same thing. My best guess is the powers that be don’t want to take responsibility for negative outcomes. Inevitably it does stop with the government. All we can do is hope for scientists to one day find a cure. Take care, Mark.

    • #24201
      Steve Dragoo
      Participant

      @joehick0529 I’m with you Joe and that is why I have tried a lot of stuff. Some has helped others didn’t hurt but I can’t prove any efficacy which is subjective anyway since I self administer.

      The list is ever-growing especially since the ccp virus has arrived. A doctor I have followed since January is an Internist and Pulmonologist (or at least works pulmonology substantially) working on virus cases. He takes a few things that I have seen mentioned here in the past year or so. BUT in various combinations, some of this stuff can be counter-intuitive.

      For example, taking Quercetin and zinc may slow down the absorption of the trace mineral we need – copper. Also if you ever take Hydroxychloroquine with the suggested Z-pak (Azithromycin), you need to stop the Quercetin for at least a day first. But there are still plenty of things we can do.  Hope this helps… – Steve

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