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    • #23155
      Muhammad Akram Ali
      Participant

      What medications are helpful in controlling and curbing the recurring fits of coughing.

    • #23161

      Hi Muhammad,

      Thanks for writing to us about this very important topic – the pesky cough associated with IPF sure is terrible! Unfortunately, there is nothing yet on the market to suppress the cough, and some patients find things that work whereas others don’t. Feel free to search the forums using the search bar at the top right of the forums page, typing in “cough” or “dry cough” and a number of different conversations should come up. In those conversations patients talk about some things that help them — Gabapentin works sometimes, others talk about soda water (and the carbonation) being helpful, etc. Also check out ipfcough.com and see if you can register for that clinical trial. Hope this helps a bit!

      Charlene.

       

       

       

       

    • #23172
      Virginia Currie
      Participant

      Gabapentin works for me.  I’m able to be functional at work and at home.  I take 3 cap 300 mg TID.  Before then, I cough excessively at work and has difficulty sleeping at night.

      • #23181

        Hi Virginia,

        Thanks so much for connecting and letting us know Gabapentin works for you. I know a lot of patients have been having luck with it! Happy to hear it is helpful with that pesky cough.

        Charlene.

    • #23175
      JillT
      Participant

      I find codeine to be generally very effective and it doesn’t have a sedating effect on me, so I’m still able to drive and do all daily activities without having to worry about safety. Of course, nothing works 100% so every now and again, I’ll still have a nasty bout of coughing. It’s very exhausting 🙁

    • #23177
      Vickie Verser
      Participant

      My pulm0nologist prescribes Tussionex cough medicine when I am having lots of trouble with coughing.  I only use it at night because it makes me drowsy.  It is the only thing that helps me!  I have tried all the home remedies and all the over the counter cough medications.

    • #23178
      Richard L Shelby
      Participant

      There are many items (both prescription and OTC) available to combat cough but a physician warned me that although any of them might help, none of them work for everyone, and most won’t work for given individual. So, he said, try one and then another until you learn what works best for you. Your physician can give guidance on what to try based on his/her knowledge of your disease and specific situation, so begin by asking your physician. In the meantime, here’s what helps me.

      Sipping water or club soda keeps the cough down fairly well. This is a tactic I use at home or when dining out or in a social situation with others. It does have the downside of more frequent bathroom trips.

      Something which works very well for me is chewing gum. Cinnamon flavor is my favorite as it keeps saliva flowing and the flavor seems to last longer. Since continuous chewing looks unattractive and can be disruptive to others, I chew a few times and then “park” the gum in my cheek until I feel my throat start to dry. In situations where chewing the gum may be awkward, for example at church, I explain to people why I’m doing so. (I was not able to attend a full church service due to disruptive coughing until I started chewing gum. My fellow parishioners are now quite accepting of my “habit” and I think that most of them no longer notice it.)

      Water and chewing gum work for the intermittent cough. However, I used to also have coughing “fits”. They would hit during the day or night, awakening me as many as three times in a night. These would come on despite my sipping club soda or chewing gum tactics. I would continue coughing for two minutes or so and get short of breath. On the recommendation of a friend who is a physician (but not my physician) I tried NAC (N-Acetyl Cysteine or Acetylcysteine). It is available without a prescription in the US. I stated taking 600 mg each evening and the coughing fits stopped almost immediately. After taking it for about a year, I stopped to give my body some “time off” and the nighttime coughing fits started back after a few days. I restarted the NAC and the fits stopped again.

      That’s my experience but what works for me may not work for you, and vice versa. Talk to you physician and try a remedy. If it doesn’t work, try another one.

      Richard

       

    • #23180
      Susan Zimmerman
      Participant

      My husband uses benzonatate capsules, 200 mg, up to 3 times per day, prescribed by his pulmonologist. This is the generic for Tessalon Pearls. It works very well to suppress the persistent dry IPF cough and he has no side effects. If he does start coughing, he finds that Ricola Sugar Free cough drops help to stop the cough.

    • #23182
      Susan Zimmerman
      Participant

      And a P.S. His Medicare Part D prescription medication plan doesn’t cover benzonatate, so it was very expensive. So we used a GoodRx coupon and were able to get a 90-day supply (270 200-mg capsules) for $85.

    • #23183

      I completely agree it is Jill! And it is painful – at least, I find it is painful in my chest and back muscles when I have a coughing fit. I won’t qualify because I am <40 but check out the ipfcough.com study by Respivant (sponsored banners now on the forums) to see if you qualify for the clinical trial aimed at reducing the cough. Have you checked this out already?

      Charlene.

    • #23184
      JillT
      Participant

      I don’t think research has the emphasis here in Australia that it has in the US or elsewhere. I’ve tried to contact two different lung research bodies here using the ‘contact us’ pages on their websites after your previous post about patient registries. Had no response from either. I would very happily donate my DNA, lungs, whatever to research but the lack of interest so far has been pretty underwhelming. Same deal when I spoke to one of the hospital consultants prior to moving to a private practitioner.

      I’ll admit though that I’m less willing to engage in research while I’m still alive – because almost all would require constant lung function tests, something I’m absolutely unwilling to do as I’ve developed an almost phobia about the tests and the debilitating coughing involved over the past 10 years. I finally just said I didn’t consent to any more tests besides 6 minute walk tests and scans.

      By chance, the PF Youtube channel have just posted a whole series of talks from the recent conference on patient registries and I’m currently watching them.

      • This reply was modified 1 month, 1 week ago by JillT.
    • #23189
      john styles
      Participant

      I find menthol cough drops work. The prescription cough syrup helps and the benzonatate prescription pills help. the real shocker for me was finding modifying the diet helped most. I would have coughing fits sitting up and laying down and standing. I never had gerd or thought I did not have gerd but when I stopped eating at night, eliminated food that was fried or higher fat and eleimated spicy food my cough went away. Now if I have a glass of wine I take a pepcid and this is in addition to nexium twice a day. Basically follow the gerd diet.

    • #23190
      Mark Koziol
      Keymaster

      Hello John, thank you for sharing your experience on the coughing fit topic. Your suggestions can be quite helpful for the forum members. It’s always nice to know about another persons perspective. Best wishes, mark.

    • #23193

      Hi Vickie,

      Thanks so much for writing and sharing your experience with us on how your doctor helps you manage the cough. I’m sure your experience will help other patients, as this is a topic people are desperate in finding answers for. I appreciate the time you took to post this for all of us.
      Charlene.

    • #23199

      Hi Richard,

      Wow, thank you so much for the thought that went into this post for all of us to benefit. The recommendations you’ve tried (and sounds like, had some successes with) to stop the fit of cough are easy enough for many of us to try to see if it works for us too. Here’s hoping! The gum idea and water I’d heard before, but now I’m hearing a lot about tonic water benefits helping others. I will keep this in mind too.
      Many thanks – I have no doubt that other members will benefit from your informative post.
      Charlene.

    • #23200

      Hi Suzanne,

      Many thanks for sharing what helps your husband with the pesky IPF cough! I have it more now (since my setback) than I ever did before and it can be horrible. Glad to hear your husband gets relief with this prescription, although I’m sorry it isn’t covered. Hopefully others can find some relief with this same treatment too. Thanks for sharing.
      Charlene.

    • #23201

      @jill-tanner

      Hi Jill,

      Thanks for connecting with us, although so sorry to hear that no one has returned your inquiries about patient care registries. I can’t remember which part of Australia you are in, but I know a friend who had a transplant at The Alfred in Melbourne for IPF, and he is very active in both that center now (I believe as an advocate) and also the Lung Foundation Australia. Did you connect with both of them? I wonder if they could help point you in the right direction….

      Thanks for reminding folks about the PF YouTube channel too. Lots of information on those webinars!
      Charlene.

    • #23215
      Muhammad Akram Ali
      Participant

      Thank you colleagues of the forum for posting so many experiences in managing the coughing fits.

      I will certainly try out most of them and adopt the one that is the best fit and will post you on it.

    • #23264
      Kathy Phillips
      Participant

      What helps my husband is Thieves Cough drops.  I break them up and put pieces in a jar for him.  No other cough drops works like these.  I also have a blend for our diffuser with Eucalyptus Globuhis, Wintergreen and peppermint.  He carries a bottle of RC oil with him every where.  He rubs that on his chest / throat area when he gets a coughing fit.

      I think his cough has gotten worse the past few days but he was doing a little wood working for me and I think that saw dust, even with a mask, triggered that tickle.

      But we are reading on this thread and PatientsLikeMe on the IPF forum that many are having issues with cough now more so than a few months ago.    We also boost the immune system daily.

      Possibly a saline rinse would help but he won’t do that – chicken.  But a nettie pot or the Saline Nasal rinse kit from Amazon would help, it sure helps me when I get clogged up.

      Boost those immune systems!!!

    • #23281
      Ed
      Participant

      Gabapentin stopped my wife’s terrible cough in 1 day.

      • This reply was modified 1 month, 1 week ago by Ed. Reason: duplicate
      • This reply was modified 1 month, 1 week ago by Ed. Reason: duplicate
    • #23291

      This was a really good thread to start Muhammad, thanks for doing that for us – I have no doubts others benefitted from this topic too. Have you checked out the study being done to try and stop the cough yet, @makramali ?  It can be found on: ipfcough.com 🙂
      Charlene.

    • #23301

      Hi Ed,

      Thanks so much for sharing this with us – I’ve heard a lot of patients having success with Gabapentin. I’m so glad your wife got relief from the dreaded cough. I hope this continues for her!
      Charlene.

    • #23314
      Wendy Dirks
      Participant

      Hi, Muhammad and others on this thread – Coughing fits are so annoying! I tend to get them at bedtime for some reason and sometimes cough until I have muscle spasms around my ribs. Strangely enough, the only thing that helps is honey. I keep a bottle of honey next to the bed now. I take a teaspoonful to start and hold my head back so it goes down the back of my throat. My coughing seems to start in my throat rather than deep in my lungs, although that’s where it ends up. Sometimes if it happens during the day I make the traditional mixture of honey and lemon juice, which also helps a lot. I don’t take any medication for it at all.

    • #23319
      Susan Howitt
      Participant

      I have the double whammy of a PF cough plus a Bronchectasis one, latter being worse most of the time.  I do have Gababentine but take that as little as possible, prednisolone helps with the PF cough plus Bronchocod syrup but that may not be helpful for IPF, I also chew gum, was told that peppermint is not recommended for lung complaints, no idea why but I use spearmint variety and that seems to calm the throat tickle, funny but honey produces a cough in me, love the stuff but have had to severely reduce my intake. I also use the same blend of oils as Kathy as a chest rub, eases the night time cough and I find it very soothing for the muscle and throat pain that constant coughing brings periodically.

    • #23332
      Kathy Phillips
      Participant

      @Wendy-dirks , My husbands cough also gets worse when he lays down.  That is the only time use uses oxygen.  He’s wondering if there is some relation.  He does cough during the day but at night it’s more from his throat than lungs.  He stopped by the O2 place today and they are coming to check the air filter on the machine.  Typically they change it every 6 months or so and we just realized it had not been changed in a year or more.

      @Susanhowitt, since you use the same oils as my husband, do you diffuse as well?  Have you tried RC for the cough or the cough drops mentioned?    Breathe Again is another amazing blend to help loosen up the lungs.  I’ve never read an article about peppermint being bad for the lungs, may I ask where you read this or in what context?  Always looking to learn more.

      Toby does not want to take a prescription if possible.  I see all the comments about “Gaba” working but he’s not to the point he wants to go that route.  We are seeing so much improvement in his overall health doing the alternatives that he feels confident it will work rather than the prescription.  but if there comes a time that is needed he will do is necessary.

      @Charlene thank you for the link……ipfcough.com !

    • #23335
      Doug Jones
      Participant

      For those interested in the formal recommendations from the American College of Chest Physicians, you may want to check out this article from CHEST–their official, refereed publication from 2018; below is an abstract of the article..

      Doug Jones

      Treatment of Interstitial Lung Disease Associated Cough:  CHEST Guideline and Expert Panel Report.   Surinder S. Birring, MD; Joanne E. Kavanagh, MBChB; Richard S. Irwin, MD, Master FCCP; Karina A. Keogh, MD, FCCP; Kaiser G. Lim, MD, FCCP; Jay H. Ryu, MD, FCCP BACKGROUND: Chronic cough in interstitial lung disease (ILD) causes significant impairment in quality of life. Effective treatment approaches are needed for cough associated with ILD. METHODS: This systematic review asked: Is there evidence of clinically relevant treatment effects for therapies for cough in ILD? Studies of adults aged > 18 years with a chronic cough $ 8 weeks’ duration were included and assessed for relevance and quality. Based on the systematic review, guideline suggestions were developed and voted on by using CHEST guideline methodology. RESULTS: Eight randomized controlled trials and two case series (10 patients) were included that reported data on patients with idiopathic pulmonary fibrosis, sarcoidosis, and scleroderma-related ILD who received a variety of interventions. Study quality was high in all eight randomized controlled trials. Inhaled corticosteroids were not supported for cough associated with sarcoidosis. Cyclophosphamide and mycophenolate were not supported for solely treating cough associated with scleroderma-associated ILD. A recommendation for thalidomide to treat cough associated with idiopathic pulmonary fibrosis did not pass the panel vote. In view of the paucity of antitussive treatment options for refractory cough in ILD, the guideline panel suggested that the CHEST unexplained chronic cough guideline be followed by considering options such as the neuromodulator gabapentin and speech pathology management. Opiates were also suggested for patients with cough refractory to alternative therapies. CONCLUSIONS: The evidence supporting the management of chronic cough in ILD is limited. This guideline presents suggestions for managing and treating cough on the best available evidence, but future research is clearly needed. CHEST 2018; 154(4):904-917

      https://doi.org/10.1016/J.CHEST.2018.06.038

    • #23345

      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.

    • #23350

      @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.

    • #23353

      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!

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