Toward a Better Understanding of the IPF Cough

Toward a Better Understanding of the IPF Cough
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While I don’t have a medical background or degree, I have learned a lot in the past few years about idiopathic pulmonary fibrosis (IPF).

Much of that learning comes from other patients, either via the Pulmonary Fibrosis News Forums or in conversations at events and virtual support groups. Since being diagnosed with this life-threatening lung disease four years ago, learning about IPF from other patients has been invaluable.

Regardless of the platform we use to connect, one topic that consistently is discussed among patients is the IPF cough. Whether discussion focuses on tips to suppress the cough, what an IPF cough feels like (which differs among patients), or what causes it, it’s clear that patients have many questions and need clarifying information.

Understanding the physiological mechanics of an IPF cough is a complex topic that should be left to medical experts, many of whom can be found at the Pulmonary Fibrosis Foundation’s Care Center Network.

My experience with the IPF cough seems to differ from most, as it wasn’t the primary symptom I struggled with upon seeking a diagnosis. In fact, I was rarely bothered by a cough in the beginning, even after I was told I had IPF.

It wasn’t until an exacerbation in the spring of 2017 that my cough seemed to rear its ugly head. Before that, I had struggled mostly with shortness of breath and fatigue, whereas other people were plagued by the dreaded IPF cough, which led them to seek medical attention. Unfortunately, I now deal with a dry cough and have to clear my throat regularly.

I consider myself privileged to correspond and connect with many patients living with this disease, and to hear their stories. What regularly surprises me is just how different each of our experiences with IPF is. Despite this, there are commonalities, and for many of us, better understanding the IPF cough, what causes it, and how to deal with it are among the priorities.

To help others better understand some of the causes of the IPF cough, I’ve spent time reflecting on conversations I’ve had with patients about this pesky symptom of our chronic lung disease.

Following are some of the known causes of the IPF cough, along with a couple descriptions from patients about what the cough feels like.

Acid reflux

Not only is this a popular topic of discussion on various patient platforms, but also an abundance of literature is available about the relationship between acid reflux or GERD (gastroesophageal reflux disease) and pulmonary fibrosis. While it needs to be further researched, a 2019 study published in the journal Therapeutics and Clinical Risk Management ponders whether gastric material plays a role in fibrotic transformation of the lungs in those living with IPF.

While many patients unfortunately live with both GERD and IPF, I’ve heard of patients working with their physicians to get their GERD symptoms better under control, which subsequently helps them manage their cough. If you deal with GERD or reflux, or previously have in your life, speak with your physician about how it may influence your IPF cough.

Scarring

The medical term for scarring in the lungs is fibrosis. While trying to better understand the IPF cough, I’ve been encouraged to think about the fibrosis in my lungs like a scar from a healing injury. When an injury is healing, or even after a scar has developed, it is often itchy. A cough can be described as the lungs’ way of “scratching an itch” due to the scarring. This could be why the cough is constant in IPF patients and often worsens as the disease progresses, causing more scarring.

Postnasal drip

When you have a cold, even if you aren’t a patient with IPF, you can identify with how irritating postnasal drip can be. It often forces a person to cough, or at the very least, to clear their throat. You can imagine the frequency of coughing or throat-clearing that someone with IPF and postnasal drip might experience.

Reduced oxygen or breathlessness

Common among most IPF patients is the feeling of dyspnea. Unfortunately, some patients living with this life-threatening lung disease also experience heart palpitations or abnormal rhythms due to the pressure on the heart from weakened lungs. All of these symptoms contribute to a need to cough or to clear the throat regularly, especially if it makes the patient feel as though their airway has been cleared for optimal oxygen intake.

As a patient living with IPF, has your doctor shared additional explanations or descriptions for your cough? Please share in the comments below.

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Charlene is a fiercely independent 30-something woman who can’t sit still. She loves coffee, wine tasting, playing with her dog, and spending time on the beach with her family. She’s a lover of all things travel, and never passes up an opportunity for a dip in the ocean! A proud Canadian, Charlene was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016 after 13 months of investigation into sudden shortness of breath, a chronic cough, and unusual fatigue. IPF has forced her to slow down, but she’s slowly learning the value of quality versus quantity in everything she does.
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Charlene is a fiercely independent 30-something woman who can’t sit still. She loves coffee, wine tasting, playing with her dog, and spending time on the beach with her family. She’s a lover of all things travel, and never passes up an opportunity for a dip in the ocean! A proud Canadian, Charlene was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016 after 13 months of investigation into sudden shortness of breath, a chronic cough, and unusual fatigue. IPF has forced her to slow down, but she’s slowly learning the value of quality versus quantity in everything she does.
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18 comments

  1. I have a raspy caugh that seems to go on and on. But if I take 10mg of Prednisone daily, it really settles it down. I was only getting it if the caugh was bad, so I told my lung doc that if I could have it daily, I wouldn’t be caughing so much. So I am now taking it daily. First thing up in the morning is the worse. I caugh up yuk and it sounds like my lung is leaving me. But after a few minutes, I am okay most of the day.

    • Charlene Marshall says:

      Hi Randall,

      Thanks so much for reading my column and reaching out via the comments. I’m so sorry to hear you’re dealing with the cough! I’m glad to hear the daily Prednisone is helping suppress it for you, a lot of members share that it does the same for them in the PF forums as well. Thanks for writing!
      Char.

  2. AE says:

    Charlene,
    Thank you for your article.
    A great way to help me to explain to family and friends who ask about my cough.
    Cheers,
    Amanda

    • Charlene Marshall says:

      Hi Amanda,

      Thank you so much for reading my columns and reaching out via the comments. I’m glad my column is helpful, and can help explain the cough to relatives… navigating that can be tough! Take good care and stay safe, Charlene.

  3. Charlene
    Good day. I was reading your IPF and cough syndrome. I have experienced different coughs since my 2016 diagnosis of IPF. I now have the phlegm cough proceeded my nasal drip, especially if I get low on O2.The “itch reaction” you spoke of is a thought. Best to all. On a good note I hope to be put on the donor list for a single left or right lung on Feb 11, 2021

    • Charlene Marshall says:

      Hi Eileen,

      It’s so nice to hear from you my friend, thanks for writing! As always, I appreciate hearing from you.

      Isn’t it interesting how our cough can change throughout the years? Sometimes when I have the “phlegmy” cough, I don’t know if it is my IPF progression or an acute viral infection, because normally I have the annoying dry cough that requires me to clear my throat all the time. Please keep me posted on your listing status, that is exciting news (albeit likely nerve-wracking for you too) 🙂 I’ll be thinking of you and sending my love. Take good care! Char.

  4. Susan Ferreira Atencio says:

    Thank you for the information.
    I cannot believe you have IPF at 30.
    I was diagnosed at the very end of this past October.
    I am 73.
    I started the Ofev today!. I wanted until the holidays
    were over because of the possible side effects ….
    Are you on a medication?….Ofev or the other one or none?,
    I had an appointment last week with Pulmonologist who asked if I would consider a lung transplant. At my age I seriously doubt I would be considered. Have you given any thought to this? Quite honestly even if I were somewhat younger I am so scared of the whole ordeal. Obviously at less than 30, I would imagine you are thinking about it.
    I would love to hear from you or anyone else…..this is my first post to this site….or any IPF site.

    • Charlene Marshall says:

      Hi Susan,

      Thank you so much for reading my column and reaching out via the comments. It’s nice to hear from you, though so sorry you’re dealing with this cruel lung disease too. I was diagnosed at 28 after an extensive thirteen months of trying to sort out the cause of my shortness of breath and fatigue. How did the start of Ofev go for you? It was a hard drug for me to adjust to, and I have to go off it and slowly taper back on it 2-3 times before I tolerated it, but it ended up going well. If you’re struggling, let me know and I can share a few tips I’ve learnt with you. That is also a popular topic of discussion on our PF forums if you wanted to join us: https://pulmonaryfibrosisnews.com/forums/. Most definitely transplant is for me.

      Take good care, and feel free to join us on the forums (link above)… it’s a great group of people who are kind, supportive and full of information about IPF.

      Warm regards
      Char.

  5. Susan Ferreira Atencio says:

    Thank you for your response….
    My first day of Ofev..went well and so far today.
    I imagine it takes a little while longer for the body to realize it
    does not like this drug.
    Thank you for the link to the PF forum…..I will most
    definitely go to it.

    • Charlene Marshall says:

      Hi Susan,

      So sorry for the delay in getting back to you — I’m glad you’re wanting to join our forums. I am a bit bias, but there are some amazing people on there willing to support others and ask questions 🙂
      I hope you continue to tolerate Ofev okay? Fingers crossed!
      Take care,
      Char.

  6. Dawana Andrews says:

    Hello, Charlene,
    This is my first time on this site. Your information has given me much needed answers to my questions.
    I am 59 years old, and was diagnosed on October 6, 2020; following a lung biopsy. I started on OFEV right away. The first month was difficult for me. I was taking 150mg twice a day. After some uncomfortable side effects and bloodwork, my dose was lowered to 100mg twice a day. I have little side effects as of today.
    Yes, the coughing I have can also be embarrassing because of the pandemic we’re in, I do explain to family and friends I’m not contagious.
    After reading what everyone is saying, I’m feeling better knowing I’m not alone.

    • Charlene Marshall says:

      Hi Dawana (your name is beautiful, btw!)

      Thanks so much for reading my columns and reaching out via the comments. Sorry to hear you were also diagnosed with this cruel lung disease back in October, and I hope your experience with the lung biopsy wasn’t too painful. I know it can be tough for some! I’m really glad to hear you’re now tolerating Ofev at the 100mg. Your experience sounds very similar to mine; I had to go off the drug then back on a couple times before tolerating it as the side effects were really bad but now managing 100mg.

      Do know that you aren’t alone in navigating this disease, so many wonderful people are here to support you. If you haven’t checked it out already, the PF News forums: https://pulmonaryfibrosisnews.com/forums/ is a wonderful community of people who will further help you feel less alone. Write us anytime and stay safe!
      Charlene.

  7. Bert Maidment says:

    Charlene – Thank you for your discussion about the dreaded IPF cough. I have 6 years experience with the cough and still struggle with it. I am 74. I cough mostly in the morning and then again at night with no apparent trigger. Although the cough has triggers: cold air (I can’t go outside when the temperature goes below 50 F or the cough is triggered). There are other triggers too: hot, humid air; unfortunately, laughing; and some odors/flowers/perfumes/chemicals. The worst part of the cough is 02 desaturation (I can plummet to 71% after coughing), phlegm, chest/lung pain and fatigue. I have tried most everything over the last 6 years and find that I can manage better (Although I still cough, but less intense) with the following plan: acid reflux medicine daily (pantoprazole), guaifenesin (to reduce lung wheezing and post-nasal drip and promethazine/codeine cough syrup three times daily or prn, sometimes meditation when coughing bouts are prolonged. I go through a box of Klenex every other day. The worst is when a coughing bout starts when I am driving my car and I have to pull off the road quickly and rest until it passes. I wish I could provide IPF coughers with a remedy that works 100% of the time but I am sure that others have found additional meds or treatments that work for them. Sharing these real life experiences are most important. Be well, get vaccinated, stay happy, healthy and sane….BERT

    • Charlene Marshall says:

      Hi Bert,

      Thanks so much for reading my columns and reaching out via the comments. I so appreciate hearing the strategies that work (as well as possible) for you to combat the IPF cough. This is such a popular topic of discussion among patients, because like you, many of us have coughing triggers like temperature changes, scents etc. It’s hard to navigate! Thanks for sharing and stay safe… I would imagine the list of options that help you with the cough will help others who read this!
      Char.

    • Harletta Carthel says:

      Bert, my first post also. My lungs were damaged with Bleomycin I was taking for Hodgkins Lymphoma in 2016. The cure was as bad as the disease I was taking it for! I am like you, coughing in morning, tapers off and then returns for some reason when it starts to get dark (late evening), and yes laughing. Ipratropium Bromide nasal spray .06 percent really helps my runny nose. I love everyone sharing ideas that help them. I was a super active person before IPF and I have to admit I am not adjusting well (attitude wise) to my new normal. I am also kind of vain and hesitant to wear my portable oxygen in public. I appreciate all the things everyone suggests and tries and knowing I am not the only one with this terrible disease ( I live in a very small town) Harletta

  8. Harletta Carthel says:

    Bert, my first post also. My lungs were damaged with Bleomycin I was taking for Hodgkins Lymphoma in 2016. The cure was as bad as the disease I was taking it for! I am like you, coughing in morning, tapers off and then returns for some reason when it starts to get dark (late evening), and yes laughing. Ipratropium Bromide nasal spray .06 percent really helps my runny nose. I love everyone sharing ideas that help them. I was a super active person before IPF and I have to admit I am not adjusting well (attitude wise) to my new normal. I am also kind of vain and hesitant to wear my portable oxygen in public. I appreciate all the things everyone suggests and tries and knowing I am not the only one with this terrible disease ( I live in a very small town) Harletta

  9. DOCTOR DON says:

    Good AM Charlene. I can’t thank you enough for your posts. As a retired physician I reminisce about how effective I was communicating valuable information and compassion to my patients. I am 66 and was diagnosed/symptomatic with IPF three years ago. I am on OFEV and side effects (GI) wax and wane. I am constantly hoarse from phlegm and have to clear my throat. Cough is minimal. It always amazes me how each patient reacts to given therapies—no person is the same. Even with stable PFTs I sense my fatigue has worsened and I’m winded easier now. I came across this device that is used for Obstructive lung diseases (called AirPhysio) that supposedly has some benefits (mucous) with IPF despite it being a restrictive LD. I am blessed with minimal coughing, minimal SOB at rest and no oxygen needs (yet)! Thank you for all you do. Lung transplant is on my radar (as long as the donor doesn’t have COVID!!!). Any comments on these bio markers (e.g.(Calprotectin) used to predict how advanced one’s IPF is? Don Salzberg MD

    • Charlene Marshall says:

      Hi Don,

      Thanks so much for reading my columns and reaching out via the comments. I’m really grateful for your kind words!

      I appreciate hearing some of your reflections, and your experience with this cruel disease so far. Yes, that has been one of my greatest learnings from interacting with other patients: everyone seems to be so different on this journey! Sorry to hear you’re feeling increasingly fatigued and more short of breath. So frustrating for us patients to deal with that. Keep us posted on your lung transplant experience, also one that is so different for many patients, and we can all learn from one another.

      Regarding biomarkers, I don’t unfortunately have enough knowledge to comment. Might be a good thing to ask on the forums though if anyone has experience discussing these with their doctors and/or researching them.

      Take care,
      Char

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