Monday, August 10, 2015

I have PF. What can I do about my cough?

Cough is one of the most troublesome symptoms for people living with pulmonary fibrosis. I would like to share my thoughts about treatments that seem to help cough in many of my patients with PF.

First, remember that I can't give medical advice here. Always discuss this information with your doctor before starting, stopping, or changing any of your treatments.

Most people with PF who have cough suffer from a bothersome and persistent cough without much phlegm (also known as sputum, which is any liquidy stuff you cough up). When there is phlegm, it tends to be thin and clear or white. Many people with PF report that the cough occurs in the morning (when the phlegm may be thicker) and might be worse with talking (particularly on the phone) or after exertion. Be sure to talk to your doctor if you cough up thick or yellow sputum, or if you cough up blood or blood clots, or if you have fever or chills, or if your cough changes all of a sudden.



Here are the things that seem to help my patients with PF. Nothing works 100% of the time. Some people respond to some treatments better than others. And, remember, discuss all of this with your doctor first.

1. Appropriate oxygen use. Many people with PF cough when their oxygen levels drop (particularly below 90%) during exertion or talking. See my previous posts about monitoring oxygen levels.

2. Treatment of postnasal drip. Postnasal drip (or chronic rhinosinusitis) is extremely common even in otherwise health people, and in my experience the vast majority of my patients with PF have postnasal drip. Typical symptoms include a sensation of mucous in the throat, tickling in the throat, frequent throat clearing, and the need to frequently swallow mucous. In my experience, one of the most effective treatments for this is a saline nasal wash (which is inexpensive, safe, and available over the counter in the cold and flu aisle of your pharmacy). Saline nasal washes can be administered with a netipot or a squeeze bottle. Your doctor might also recommend that you combine a saline nasal wash with a nasal steroid spray and/or an over the counter non-sedating antihistamine.

3. Treatment of acid reflux. Acid reflux (also known as gastroesophageal disease, or GERD) is pretty common among folks with PF -- even without symptoms, and is a common cause of cough in folks with or without PF. Talk to your doctor about whether you should take medication for GER. Also check out WebMD's section on treating GER without medication.

More than half of my patients have significant improvement in their cough with one or more of the above treatments. Of course, the scarring and/or inflammation still contributes to the cough. Some people with inflammatory forms of ILD have improvement in their cough after treatment with prednisone. For some folks, the cough improves only marginally or not at all. 

I've heard some of my patients tell me that N-acetylcysteine (NAC) has helped their cough. I'd be interested in hearing what has worked best for you.

26 comments :

  1. Thank you doctor for new blog post. I just want ask about being diagnosed with PF and never having had a cough is that a sign of being misdiagnosed? I have been on prednisone since my diagnosis in 2012. My condition is stable since then. I have no cough, no pain ; I don't need supplemental oxygen. My only symptom is fatigue and SOB on exertion

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    1. Hi Lala. Some people with PF do not have a cough. Maybe that's your silver lining.

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    2. Thank you doctor for you response, and sorry to disturb you again; but I want to know if PF resulting from Sarcoidosis is considered PF or IPF.

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    3. When sarcoidosis causes PF, it is considered "PF" and not "IPF".

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  2. Dr. Lederer, you mentioned that if your phlegm is thick or yellow you should tell your doctor.
    I have told several pulmonologists that mine is, and even a dark color, that seems to come and go in cycles. They never addressed this issue. What in your opinion is this indicative of and how should it be treated. Thank you.

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    1. Hi Joanne. It is hard for me to know what to make of your phlegm. The important thing is that you told your doctors. If this problem persists, you could talk to your doctor about it again.

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  3. Excellent blog Dr. Lederer. My cough had gotten so bad I could not even talk. I had all the testing done and it was recommended I have the Nissen Fundoplacation surgery which I had done in April. My cough has decreased considerably! Sometimes it's a combination of issues and not just one and I still have some cough after I eat or bad days (post nasal drip) but nothing like before. I did not realize that reflux could cause such a horrible cough but in my case that was a big part of it. I'm hoping this helps slow down my IPF a bit.
    Thanks for the blog!
    Laura

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    1. Thank you Laur for your post. My father has PF, (don't know what type) and his cough is uncontrollable. It's worse in the morning, and is frequent throughout his entire day and evening. He states it gets better at night while on his Cpap. His GERD medicine is not helping at all now. He is getting an endoscopy tomorrow because his GERD is so bad. I'm wondering if he would be a candidate for the Nissen Fundoplacation? He's 78, and otherwise pretty healthy. Although he has been a 5 year patient at Duke University Pulmonary clinic, I haven't seen any effort to do anything but put him on predisone for treatment of his PF. I'm wondering if we should change Dr.'s?

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  4. With only a PF diagnosis I used to cough mostly just during exertion, even though my O2 didn't desaturate below 95% when exerting. Then I caught mycoplasma pneumonia and developed bronchiectasis as a result. What previously was a nonproductive cough now requires I be on a steroid inhaler (Flovent) and long term antibiotic. After adding the Flovent it helped quite a bit.

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  5. Hi Doc
    What do you think of this new drug that is said to reverse lung scaring
    http://www.myeasttex.com/news/local-news/local-doctors-discover-new-drug-to-reverse-lung-scarring?searchType=ALL&compId=186996333
    Looking forward to hearing your response Doc

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    1. Sounds like these scientists found something that works in the lab. It's ok to be optimistic that this research might eventually lead to a new treatment. But you should know that there are dozens and dozens of molecules that have worked in a lab but then were found to not work (or not be safe) for people. Fingers crossed for this molecule and all the others!

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    2. Thanks for you reply. May God help YOU in your researches Doctor; know that thousands of PFers are looking forward to hopeful outcomes the sooner the better.

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  6. Hello Dr. Lederer,
    A family member was recently diagnosed with IPF and I am having a hard time understanding what he is dealing with. It seemed like all of a sudden he got a Pseudomonas) worse. His coughing was worse and he became short of breath. Prior to this, he was not on oxygen. After some testing, he was told he has a bacterial infection (Pseudomonas). Could this be the cause of his seemingly rapid decline? Once the antibiotics kick in, will/can his oxygen levels go back up? Or is this infection part of the progression of IPF? Thank you?

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    1. Bacterial infections in the lungs -- either acute bronchitis or pneumonia -- can indeed cause worsening shortness of breath, oxygen levels, and cough. I do hope that your family member improves with treatment of his infection. Different people experience different amounts of improvement with treatment, however. Sometimes things go back to the way they were, and sometimes people improve, but remain a bit sicker than they were before the infection began. Infection is not always seen in IPF -- that is, infection is not part of the progression of IPF in all or even most cases.

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  7. Dr Lederer,

    Have you heard of anyone being prescribed Pregabalin (Lyrica) for the cough? If so, were there any substantial benefits? Would you recommend it?

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    1. Drugs like Pregabalin (Lyrica) and Gabapentin (Neurontin) are used to treat cough. This is a reasonable option if (1) prescribed by your doctor, and (2) other causes of cough are being managed with other medications or interventions.

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  8. Hi am nab am 46 and was diagnosed 3 years ago I deteriorated rapidly and am on a watch and wait transplant list . My worst symptom is the coughing I have had torn muscles fractured rib due to the severity! It's a very difficult and lonely place reading about others in the same boat really helps not that I would wish this on my worst enemy !

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    1. Hi Nab. I am very sorry to hear that you are suffering in this way. I hope your doctors can come up with a solution to ease your cough.

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  9. Hi Dr. Lederer,

    Might might be the concerns when a cough is worsened by episodic chills, fever and headaches that lasts for about half a day?

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    1. Any fever or new concerning symptom should prompt evaluation by your doctor. Please visit a medical professional for evaluation of your cough and other symptoms.

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  10. Hi Dr. Lederer,

    WHat about coughing when talking? the oxygen level remains 85-90 usually when coughing starts when talking

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    1. Many of my patients with PF tell me that they suffer from coughing while talking (such as talking on the phone or during a long conversation), and that their oxygen level drops in some cases. Please do talk to your doctor to see if you need oxygen treatment.

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