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    • #20666
      linda waldschmidt
      Participant

      Why are most of the clinical trials for new drugs to stop fibrsis for people with just ipf? Are there clinical trials being done for new meds for someone that is taking cellcept and predisone for there fibrosis? It seems that the ones you read about are always for the people taking Ofev or Esbriet.

    • #20673
      Mark Koziol
      Keymaster

      Hello Linda, this is my opinion. Two of the largest pharmaceutical companies are two of the benefactors for these clinical trials and other research programs. Boehringer Ingelheim produces OFEV and Genentech produces Esbriet. There are other clinical trials in process as well. Hope this helped. Sounds like a good topic could be written on your question. This way I could possibly explain your answer more in depth. Mark

    • #20684
      Robert Morgan
      Participant

      There are clinical trials for just about every disease. PFF has a clinical trial finder for pulmonary fibrosis here:
      https://trials.pulmonaryfibrosis.org. You can find sources for other types of clinical trials through Google or other search engine.

    • #20696

      Hi Linda,

      I agree with @mark-koziol regarding his answer, and also wanted to add my thoughts to your question. It is a good one – thanks for asking it!

      I think a lot of the research/focus on drugs to help manage IPF vs. pulmonary fibrosis (the latter is whereby a cause has been determined or identified as the reason a patient is diagnosed with PF) is because there may be an option to help manage or reduce the symptoms of PF if it is a secondary disease. For example, if an auto-immune condition is a primary cause of PF, treating that auto-immune disease may help reduce the symptoms of PF. Sometimes if the primary illness that caused PF can be better managed, the PF can as well, however, idiopathic (the I in IPF) means that there is no known cause and therefore research has been focused on treatment of IPF because there isn’t a primary disease to manage first. Does this make sense? I am pretty tired so I may not be explaining this well. That could be another theory about why the research/anti-fibrotics are focused IPF vs. PF.

      Charlene.

    • #20701
      Cynthia
      Participant

      Linda, there are some clinical trials that are ending now combining Ofev and Cellcept for PF that’s autoimmune related. The results have been very encouraging. I’m on Ofev now because my official diagnosis is IPF, but autoimmune issues haven’t been ruled out. The doctors on my team think this combination of drugs could be very effective for me. I have no idea how long it will take for FDA approval.

    • #20705
      leontis teryazos
      Participant

      Wanted to let everybody know about below Phase 3 trial. It is being done in 200 sites so if you check it out you may find a site where you live:
      “GLPG1690 inhibits GPR84, a pro-inflammatory protein that promotes chronic inflammation in IPF. It was granted orphan drug designation by the U.S. Food and Drug Administration in June 2017, and by the European Commission in September 2016 as a treatment for IPF”.

      The candidate therapy is currently being evaluated in a worldwide Phase 3 program, called ISABELA. For more information about the trials and how to participate, visit the program webpage here. The Phase 3 program includes two identically designed trials, called ISABELA 1 (NCT03711162) and ISABELA 2 (NCT03733444). The trials are expected to enroll a total of 1,500 patients, ages 40 years or older, who have received an IPF diagnosis within five years of trial initiation. The trials will take place at more than 200 clinical sites worldwide, including at locations in the U.S, and Europe.

      • This reply was modified 1 year, 1 month ago by Charlene Marshall. Reason: formatting
    • #20707
      Mark Koziol
      Keymaster

      Hello Leontis, thank you for notifying the forum members of the clinical trial. Hopefully this trial will be successful and offer pf patients hope. Mark

    • #20709
      linda waldschmidt
      Participant

      Charlene, I under stand what you are saying. They believe my lung disease was caused from an antibiotic used for UTI infections. I was on predisone for 2 months until middle of June. Right now I’m not taking anything. I go see my doctor at KU Med in Kansas City, Ks. at the end of Sept. to see how I’m doing. If I need to be put on a med my doctor said it would be cellcept. My concern which I will mention to my doctor is I read it takes 6 to 12 weeks for it to take effect. I’m just thinking of the progression of the disease getting worse if cellcept takes that long to take effect. I know they prefer not use use predisone or less they have to because of the bad side effects

    • #20711

      Hi Linda,

      Thanks for your reply, and I can certainly understand your concern about the length of time Cellcept might take to be effective. Good questions to ask the physician, hopefully they can provide some answers that are helpful for you. Goodluck with the doctors appointment at the end of September! You’re right re: prednisone, it sure can be an effective drug, but the side effects are sometimes intolerable.

      Charlene.

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