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    • #31310
      Jeff Taylor-Jackson
      Participant

      Hi All,

      Yesterday I had a meeting with my consultant where she said I could now take OFEV.

      Ok, that’s good I thought, but whilst this is putting the brakes on, I want to be even more selfish and want to find something that will stop or even reverse IPF.

      Not much to ask for is it?

      I have seen trials taking place of ENV-101, now at phase 2.

      But tonight I discovered Pamrevlumab.

      I even found a site where I could buy it! Has anyone been prescibed Pamrevlumab? Has it helped?

      Curious to find out anything about it.

      Kind regards

      Jeff in a very windy England.

    • #31312
      Diane B
      Participant

      I thought that was still in trials.

       

    • #31329
      Bert Maidment
      Participant

      Jeff – I am in the Phase 3 clinical study for Pamrevlumab sponsored by Fibrogen. It is not FDA approved yet, the NDA will probably be filed in a year or so after the second Phase 3 study is completed and the data compiled and analyzed. Since FDA approval pending, it can’t be sold so I would be very leery of anyone claiming to sell it. Check with your Pulmonologist to see if they could connect you with a clinical site that is still recruiting. Good luck…BERT

    • #31337
      Jeff Taylor-Jackson
      Participant

      Hi Bert,

      Thanks for taking th etime to respond, it’s much appreciated.

      Looking at the small print on that website I found it was only for sale to clinicians and researchers not to plebs like me.

      How are you on the drug? Do you feel any benefit? Or do you think you may have had the placebo?

      Sorry for the questions, but if it does what it says on the tin it could be a game changer.

      Look after yourself,

      Kind regards

      Jeff in England.

    • #31820
      Jeff Taylor-Jackson
      Participant

      Hi all,

      Sorry to resurrect this post, but I wondered if anyone on the Forum has any information on the Pamrevlumab trial?

      What I do know that the recruitment for the stage three trial has now closed.

      So does that mean stage three is going ahead, or does it mean it’s closed becasue they couldn’t get enough people on it?

      Just me exploring any avenue that leads to a cure!

      Kind regards

      Jeff.

    • #31840
      Bert Maidment
      Participant

      Jeff – There are two ZEPHYRUS clinical trials: Z-1 is closed (no longer recruiting: target number of subjects has been achieved) and Z-2 is still recruiting. Check the following links for more information:  http://www.fibrogen.com  and http://www.clinicaltrials.gov  (NCT04419558).  Z-1 recruited patients that were previously with Esbriet or Ofev. Z-2 allows recruitment of patients that had be on Esbriet or Ofev.  I have copied the clinical sites for Z-2 in the UK for your information. Hopes this helps…BERT

      • #31846
        Bert Maidment
        Participant

        Sorry for the typos in previous response :  subjects in Z-1 did not have previous treatments with Ofev or Esbriet.  Z-2 subject can have had been on Ofev or Esbriet.  The table of recruitment site is England did not post.  Check the clinicaltrials.gov site for NCT04419558 for clinical sites…BERT

    • #31854
      Scott B Burns
      Participant

      Does it reverse or arrest the development of fibrotic tissue?

    • #31858
      Bert Maidment
      Participant

      Jeff – the data are blinded so no there are definitive results available yet. We have to wait until the trials are completed and data unblinded snd analyzed….anxiously awaiting BERT

    • #31859
      Bob
      Participant
    • #31880
      Bert Maidment
      Participant

      I was in the Zephyrus 1 (Z-1) trial which has just completed protocol enrollment. I finished the first year (placebo versus pamrevlumab) and am currently in the following on Open Label Extension (OLE) phase.  Those subjects in Z-1 study have the option to participate in the OLE phase which administers pamrevlumab every three weeks by IV infusion. Try searching google for zephyrus II, pamrevlumab, Fibrogen for more appropriate links…BERT

    • #31882
      Bob
      Participant

      To answer your question using scientific research:

      https://www.nejm.org/doi/10.1056/NEJMc1915189

      https://www.sciencedirect.com/science/article/pii/S1567576921008481

      and there are others.

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