• Cough help

    Posted by Malcolm Mann on September 21, 2024 at 4:18 am

    Hi I’ve been diagnosed with IPF since 2015, I’m on pirfenidone, I’m on O for exertion only with an ingen poc, and I am pretty lucky with my slow steady rate of decline.

    However I have a really gross cough, (disgusting), but have found something that really helps me, codeine linctus, I take 2.5ml with a syringe orally, and hold it in my mouth for a half a minute or so, and the dreaded cough stops.

    Today I’ve been coughing all afternoon, and after one squirt, no more cough.

    I don’t like using it as it is a opioid medicine, ie addictive, I only take it a couple of times a month, when the coughing gets too bad.

    For me it stops the cough,

    Temple Mayo replied 2 months, 2 weeks ago 14 Members · 15 Replies
  • 15 Replies
  • John Fraze

    Member
    September 25, 2024 at 9:34 am

    I have been able to stop most of the coughing with a 5 day treatment of prednisone. Ask your physician about that.

    • Allison

      Member
      October 4, 2024 at 4:45 pm

      My mom takes a small dose of prednisone daily. What dosage do you receive for those 5 days. Mom is only on O2 at night. She does really well except for the dry cough lately.

  • mimi423

    Member
    September 26, 2024 at 2:12 pm

    Thank you, Malcolm, I’m going to print this information for the rare instances that I can’t control the cough. Since diagnosis, two and a half years ago, my DR has me on amitriptyline, it’s a low dose antidepressant that is a low enough dose for cough but too low for depression, has made a significant change in my coughing, I take 3 pills a day. As far as someone else mentioned prednisone, run in the other direction, pred is a necessary evil at times but should never be a steady diet, just read up on the side effects of pred.

    • papa

      Member
      October 1, 2024 at 9:30 pm

      I also have this dry cough that turns into sneezing. It is getting worse as the days go by. Hope to hear from my ent tomorrow.It is hard to be in open company and start a coughing spasm.It started on my second go around with Esbriet,and is really demoralizing.Sometimes I wake up coughing and disrupts my sleep.Help is needed.

  • Steve Dragoo

    Member
    September 26, 2024 at 5:06 pm

    I assume you are in the USA and did that with a prescription? I am 8 years in and holding my own but the cough is increasing. Only been using OTC Robitussin DM which helps – slightly…

    Stay well…

    Steve

  • Marty57

    Member
    September 26, 2024 at 6:08 pm

    My coughing lasted for about a year and for some reason it just quit. I very seldom have a cough that last for over a couple of minutes.

  • Richard Staveley

    Member
    September 26, 2024 at 10:31 pm

    Recently got covid and was prescribed paxlovid for covid and Benzonatate 100 mg for cough. The benzonatate works by numbing inside your lungs and elsewhere I understand. When I have that nagging tickle that provokes cough benzonatate works like a miracle for me. I use it sparingly, although my prescription was for 3 per day. Have been taking prednisone for over a year now (down to 10 mg per day now) and the only noticable side effect is weight gain that is more than welcome because I have lost over 50 lbs since first diagnose of IPF over 6 years ago. Covid is gone too.

    Richard

    PS I am 85 years old

    • Temple Mayo

      Member
      October 8, 2024 at 3:30 pm

      I absolutely second Benzonatate. I had an uncontrollable cough. My first pulmo put me on Augmentin and prednisone along with Tussionex (opioid). It would help, but when I stopped, the cough would come back and we start the carousel all over again. My second pulmo put me on benzonatate and arithromycin. The arithromycin is only takem Monday, Wednesday, and Friday. No issues since.

  • Sandyman

    Member
    September 27, 2024 at 12:00 pm

    codeine linctus is not available in the U.S. It is only available now in the UK and Australia.

  • Robert Gross

    Member
    September 27, 2024 at 12:25 pm

    I’ve had IPF since 2016 and have had two types of cough. The first was what got me to a diagnosis and lasted several years, and was a low level nagging cough. It finally got controlled when my pulmonologist prescribed benzonatate (Tessalon Perles.) That worked like a charm.

    Last year I got pneumonia and the cough went away, to be replace by a deep liquid cough that particularly bothered me at night. My pulmonologist prescribed gabapentin which worked. I no longer need the benzonate and am saving a bundle on cough drops and cough syrup.

    • Allison

      Member
      October 4, 2024 at 4:47 pm

      How did the gabapentin make you feel? I mean differently than normal? I’m looking for a solution for my mom.

  • Bruce F.

    Member
    October 1, 2024 at 7:28 pm

    Hi Malcolm—

    I would treat your cough aggressively, and hope you and your pulmonologist track it closely. I was diagnosed and symptom-free for two years until this spring, when I experienced a nagging cough which evolved into a very dramatic and damaging exacerbation of my fibrosis. I communicated with my pulmonologist via the portal and he prescribed a series of remedies, but things worsened and I ended up in the ICU, and the exacerbation cost me over half of my lung function (measured with a PFT). I am now on oxygen and will always wonder if things would have gone better had I treated the cough more aggressively.

    Sorry for the bummer of a story! Best wishes to you. Hope the cougg settles soon without growing into something damaging.

    Cheers, Bruce

  • cpfeln

    Member
    October 2, 2024 at 11:53 am

    I was prescribed Trelegy and it was a game changer for me. Within a week the cough was completely gone. I started at the 100 mg inhaler for about one year and am now on 200 mg. It’s been a game changer for the wracking cough I had. It is an inhaled medication that you use once a day. It lasts the full 24 hours.

    • Allison

      Member
      October 4, 2024 at 4:49 pm

      I’ve been wondering about an inhaler of some type for my mom. I’m going to ask at her appointment next week.

  • david posner

    Member
    October 3, 2024 at 2:14 pm

    for those of you who have benefited by using steroids for your cough, or inhaled medications; i hope you have been not diagnosed with Usual Interstitial pneumonitis form of pulmonary fibrosis UIP. those forms of PF are not steroid responsive in any fashion and you should check to see if the diagnosis was correct.

    other forms of PF such as hypersensitivity pneumonitis, NSIP, sarcoidosis would respond to steroids on occasion, even perhaps an inhaler. But not UIP

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