• Charlene Marshall

    Member
    March 5, 2020 at 9:22 pm

    You’re most welcome @kathy-hamblin-phillips ! If you have any questions about the SCENIC study ( ipfcough.com ) let me know, and I can put you in touch with a contact who can give you more information on it, if your husband is interested in seeing if he qualifies for the study. I was lucky to spend time at the Respivant offices in California last weekend, and learn more about the study and understand it a bit better. It really has amazing potential to help improve patients quality of life if they can eliminate this pesky cough! Really smart, compassionate and dedicated folks working on this…
    Charlene.

  • Charlene Marshall

    Member
    March 6, 2020 at 10:33 am

    @dejones8576

    Hi Doug,

    Thanks so much for sharing this article, the abstract was really interesting and I am looking forward to pulling it in full and having a read through it. So much more research is needed to help address the ILD cough, which so deeply compromises a patients quality of life. I talked about this last week when I joined a biotech company recruiting for a clinical trial to address/stop the IPF cough – the first one (to my knowledge) focused on eliminating a symptom that will improve QoL for patients, not just try to cure the disease. Both are so important, but I’d love to see something on the market to help the cough! Their study can be found at: ipfcough.com … I am going to take a read through this article now. Thanks for sharing!
    Charlene.

  • Charlene Marshall

    Member
    March 6, 2020 at 10:46 am

    Hi Kathy,

    Thanks so much for writing to us and letting us know what works to help your husband get a bit of relief from the pesky IPF cough. It is just a terrible side effect of this disease! I’ve heard other patients being helped by the cough drops you mentioned, and some oils as well. Glad these work for him.

    I hope the increase in his cough isn’t due to some viral/bacterial infection, I am still coughing from this and it is taking a long time to recover from. It is increased my cough overall I believe, which is frustrating. I have a bit more “mucus” now too (as opposed to just the dry cough) which is frustrating and my pulmonologist did recommend a NETI pot to help with this, so hopefully he is willing to give it a try 🙂

    Thanks for writing to us and I hope your husband continues to do well. Keep in touch!

  • jaanetmczach

    Member
    September 5, 2022 at 4:31 pm

    I used to have a dry cough with my IPF, but in the past couple of months I have had a sticky saliva mouth and cough up white phlegm, especially in mornings and at night, although I had a huge coughing, spitting choking fit today mid-day. I end up gasping for breath, mouth wheezing, tears streaming down my face, coughing more — it sounds awful and makes me panic. I can barely get a sip of water down for a while after the worst is over. Nothing I have tried helps much, including codeine cough syrup and benzonatate capsule. In the throws of an attack I can’t even hold a cough drop in my mouth or sip water. I will ask my pulmonologist about alternatives at my next visit.

  • pauline-korol

    Member
    September 6, 2022 at 2:09 pm

    In regards to coughing, I find Fisherman’s Friend to be quiet effective and cheap. .  Might not work for everyone, but certainly worth a try.

  • pfcaregiver

    Member
    September 6, 2022 at 4:22 pm

    My mom has IPF and has had a wet cough for months and constantly coughing up phlegm. I’m convinced that coughing it up and out is the best thing to do.

    Cough drops is the best thing she has found for relief. She used to take Benzonatate but stopped taking them not finding them helpful. She thinks Zarbee’s cough and Mucus syrup helps.

  • w-terry-schoener

    Member
    September 7, 2022 at 9:47 am

    Hi Everyone. After trying a couple of things to settle down my coughing I found ordinary over the CVS counter Tussin DM to be effective. Hope this helps.

  • roger-cummins

    Member
    September 8, 2022 at 5:12 pm

    Benzonatate did nothing for me, but Gabapentin has been a life-saver.  300 mg three times a day for 2 years now and absolutely no side effects.

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