Pulmonary Fibrosis News Forums Forums Treatments and Science Dextromethorphan as cure for lung fibrosis?

Tagged: 

  • Samuel Kirton

    Member
    January 24, 2025 at 10:35 am

    Maurice,

    Thanks for sharing this information. Have you discussed this with your mother’s care team? In the US, another antitussive, Tessalon Perles, is commonly prescribed. Its active ingredient is benzonatate. I quickly searched for studies using Dextromethorphan and could not find one related to pulmonary fibrosis. As you learn more please come back and share the information/source.

    Sam…

    • maurice77

      Member
      January 25, 2025 at 3:04 pm

      Hi Samuel,

      The Benzonataat is only used as cough represssent and doesn’t improve the fibrosis as far as I can see.

      The pneumologist is not very open for discussion. They just follow protocol, and you should be happy to receive the costly anti-fibrotic medication.

      We checked any cross interference with other medication she is on, and there isn’t.

      It is also no option to wait for the Heidelberg phase 2 trial, it hasn’t started yet and you still have the chance that you end up in the placebo group.

      My mother just turned 75 and is 24/7 on 4,5L/mi of oxygen.

      We just give it a try for the coming months with 15 or 30mg per day. This is quite a low dose since the max daily dose is 120mg/day. She has a check up every 3 months, we’ll see how it goes.

  • Steve Dragoo

    Member
    January 24, 2025 at 2:51 pm

    Regards Dextromethorphan – it is is some cough syrup OTC and I use it almost daily for 2+ years but have zero insight for stopping/slowing (I)PF. A quick AI search indicates it may help buttttt – it is AI saying that..

    Interested in the German study…

    Stay well,

    Steve

  • Bruce F.

    Member
    January 24, 2025 at 2:53 pm

    Thanks, Maurice! I also recently noticed the mention of dextrometgorphan as a possible tool against fibrosis, and it sounds like something to ask your pulmonologist about. I am not a scientist or a dosctor, but from what I can tell this may be of some promise.

    Read more in this recent publication from the NIH (and trust that the freeze on federal medical communications announced this week is temporary): https://pubmed.ncbi.nlm.nih.gov/39693409/#:~:text=Excessive%20deposition%20of%20fibrillar%20collagen,coinciding%20with%20their%20secretion%20block.

    • maurice77

      Member
      January 25, 2025 at 3:07 pm

      Thanks,

      I read a lot of the news articles from the past weeks.

      The one from china I posted is also quite interesting, however it is based on a small group of patients.

  • Sally

    Member
    January 28, 2025 at 10:58 am
  • Larry70

    Member
    January 28, 2025 at 5:40 pm

    I’ve found several NIH articles over the years discussing small studies that suggest a particular treatment may have some benefits with the treatment of PF or IPF. My pulmonologist cautioned that while these studies and papers may sound promising, until larger studies and clinical trials are done, that it isn’t something to take much stock in. I read about a study saying certain Cannabinoids might also have promise with IPF. I had been taking Dr. Noble’s (from Cedar Sinai Medical Center) Zinc protocol for the past year (NAD+, Zinc, and Resveratrol), which has a similar hype about how it may help with IPF. However, can’t say it’s helped me much at all after several months being on it – and plan to stop soon. We all want something more effective now but we may need to wait a bit longer before something is available that is proven to be effective in a large study, like Ofev was.

    • maurice77

      Member
      January 29, 2025 at 11:42 am

      Hi Larry,

      You are right, some preliminary results of small tests are often hyped in the media. And one should better wait until the results of large trials are done.

      However my mother doesn’t have the time to wait a couple of years. And probably the pharmaceutical industry is not very eager to spend millions of dollars on research on pills which costs nearly nothing. Or they take it from the market and sell it again for a fortune afterwards, if proven effective.

  • Patricia Meadows

    Member
    January 31, 2025 at 10:15 am

    Hi everyone.

    Maurice, if it doesn’t harm your mother, it’s worth trying the dextromethorphan and I hope it helps her.

    On another tangent, and not to be pedantic, I think we should use the words “cure” and “amelioration” with caution. My understanding as someone diagnosed with PF in 2013 is that once the lung tissue is scarred it cannot be “unscarred”; that is, restored to its former condition. However, there’s lots of encouraging research and experience out there with treatments that can/might slow down the fibrosing so there’s always room for hope.

    – Patricia

  • Robert

    Member
    January 31, 2025 at 1:45 pm

    Thanks for the info Maurice77,

    I have been an IPF patient on Ofev for close to 3 years but worsening with each passing year.

    I just started using dextromethorphan 60mg tablets twice a day now along with my prescribed Nintedanib 150mg twice a day to see how it works. Coughing and lack of oxygen are my two major problems nowadays, let’s see if there are some improvements.

    Can’t wait to see Fibroneer FDA-approved for IPF patients within the 2025 time frame!

Log in to reply.