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    • #29655
      Nigel Wright
      Participant

      Research into PF & IPF is restricted by the lack of Funding and Resources due to the relative low numbers of sufferers and therefore classified as a Rare Disease.  Also when treatments are developed they tend to be very expensive and can cause patient distress. However with millions around the world now suffering from Covid 19 it is predicted that 2% of these patients will have suffered a degree of fibrotic lung scarring. This produces a huge population of PF patients which will drive the research and treatments for this devastating disease.
      A new potential PF treatment was reported in the UK news today for the treatment Covid 19 PF patients at London’s Guy’s & St Thomas’s Hospital. They simply collect a bag of blood from the patient then spin it in the lab to separate a type of white blood called a Macrophage. This is then infused back into the patient to dissolve the lung scarring ! It states 5 patients to date have been treated  and a larger trial is planned. Sounds so simple and too good to be true. Has this method ever been tried in the USA .

      Even if this trial does not deliver the expected results the large population of Covid PF suffers will drive the research forward in years to come giving us the spin off benefits

    • #29657
      Nigel Wright
      Participant

      The name of the study is
      The MONACO Cell Therapy Study: Monocytes as an Anti-fibrotic Treatment After COVID-19 (MONACO) and is listed in the US National; Library of Medicine

      • This reply was modified 3 months ago by Charlene Marshall. Reason: formatting to remove code
    • #29656
      Nigel Wright
      Participant
    • #29662
      Bob
      Participant

      London’s Guy’s & St Thomas’s experiment with Covid lung scarred patients seems to offer some help. Can we expect that the trial will not be limited to just Covid victims but will also include the IPF patients who have been in the awaiting treatment queue for many years…

      • #29719

        I’m with you @bob-osborne and sure hope so! Of course COVID is awful, but I’m hopeful the research that comes from it is a silver lining to PF patients who have long awaited some concrete research for our hideous disease.
        Char.

    • #29676
      jim nox
      Participant

      Nigel,

      Regarding the UK treatment of removing, centrifuging, and then reinjecting the concentrated macrophanges/white plasma.

      This sounds indentical to the proceedure being done for years by the Lung Health Institute of Tampa FL and Dallas Tx. It is a two day deal. Each day they do the extraction/spin/re-inject procedure.

      I underwent this procedure twice early in my course of IPF (about 2 years ago). Although I experienced no adverse effects, I experienced no noticable benefit or improvement. After the second time, about 6 months apart. I declined to continue, as it cost several thousand each two day treatment,was not covered by insurance/medicare, and appeared to me to be non-efficacious, at least in my case. Just my ancedotal experience.

       

    • #29683
      Nigel Wright
      Participant

      Hi Jim I thought it had been done somewhere else and I am sure in their background research they would be aware of the work already carried out in this field. It maybe they have modified the process in someway. However  the  exciting bit is that COVID related Fibrosis affecting huge populations around the world should  generate a massive increase in research funding on a fast track basis It is this big increase in research that is required to solve our complex fibrotic medical problems.

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