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Hi, Augusta – I have a different form of PF (CHP), but the symptoms are similar. My coughing has been steadily getting worse over the last couple of years and is worse when I get up and just before I go to bed. I also cough when I laugh or sometimes when eating. At this point, the coughing can rapidly turn into convulsive, gut wrenching episodes that make me feel as if I am going to vomit. It’s pretty awful. I also take allergy medication and use cough sweets to sooth it and the best remedy by far is simply swallowing a spoonful of honey. I have been keeping a diary of my symptoms for a couple of months and I notice that the coughing seems to occur when I change positions after a long period of time. For example, in the evenings, I sit on the couch and read a book before bedtime for at least an hour, and when I try to get up and go to bed, I begin to cough and it continues until I’m actually in bed. The same thing occurs when I get up in the morning. I am only supposed to use oxygen when I’m up and about but I have found that if I lie in bed in the morning with the oxygen going for a while, then get up, the coughing is much less severe. The same thing applies in the evening when I’m going to bed. If I lie down with the oxygen going at a very low flow and suck on a cough sweet, the coughing is far less severe.
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When my cough started after about 6 months after I was diagnosed I wasn’t sure whether it was the IPF cough or just a normal one. But it never left. so I guess it is the IPF cough. I have jut started a clinical Trial on the IPF cough in Sydney, Australia. I’ve been on some medication called Ifenprodil for 8 weeks now and I definitely feel that my cough has improved immeasurably. I still do have an occasional cough, but I’m pretty sure that is due to the cold that I caught. It is so nice not to be constantly coughing. I have another 4 weeks to go on the trial.
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My coup is continuos from the time I wake up. I also have nasal drip. I take benzonatate prescription meds 3 pearl tablets 3x a day. Mucinex syrup also helps me but instead of the 12 hour effect I observed it’s effect is around 8 hours. I also have halls candy and that helps me control my coughing.
Allan Byron
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Hi. I have ILD. Grey matter on my lungs. Started may of 2020.
After all kinds of testing and finally needed oxygen in December of 2020.
I was on nortriptyline started in February of 2021 from my gastrolist and helped alot with my coughing and dry heaves and phlegm.
Then I went down hill again in the spring and this summer of 2021. I asked my pulmonologist about predisone and he said he was reluctant to put me on Prednisone. Huge mistake because finally he put me on Prednisone early August and it’s been a miracle drug for me ! My breathing is 100% better. No major couphing anymore . Not larthargic in the morning. Glad is working but furious that my pulmonologist did not put me on Prednisone months ago. Reckless in my eyes. Will get new ct scan in about a month to see if my grey matter scarring ( not permanent) has decreased. So maybe try predisone? Best regards
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Hi Augusta,
Thank you for sharing, though I’m so sorry to hear about your cough. The PF cough can be so unpredictable in terms of when it develops and sometimes it can be triggered by things other than disease progression like allergies, irritations, etc. My throat often gets sore if I have a coughing fit, but I don’t experience the chest tightness – sometimes just muscles get sore from coughing. Do you have any other signs of a cold, which might be due to the new cough and/or chest tightness, things like, sore sinuses, fever, aches? This is a good question to ask your doctor if you can, about the sudden onset of coughing, because he or she will know your IPF “baseline”.
Take care,
Charlene.-
Hello Charlene, have you come across an infection called pseudomonas, it particularly affects people with lung conditions. The symptoms are lots of coughing with lots of phlegm and it’s very debilitating. It’s diagnosed by testing the sputum. The reason I mention it is because it’s easy to confuse this with a regular chest infection but the antibiotics given for a chest infection won’t work to clear pseudomonas.
Best Wishesliam
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People with compromised lungs predispose to infections. The antibiotic of choice to cure the infection will be determined by the identification & antibiotic susceptibility tests (AST) performed on the bacterial pathogen growing from your sputum or bronchoscopy specimen. Pseudomonas is often resistant to many antibiotics, so lab ASTs will be needed to determine the appropriate treatment regimen.
Good luck! -
Hi Liam,
Thank so much for sharing – yes those pseudomonas infections can be so scary for those of us with compromised lungs. Thankfully, I am on the mend now but not without switching antibiotics because the ones I was on was definitely making me worse.Take care and thanks for writing,
Char. -
Hi Charlene, further investigations found it was serratia and not pseudomonas and the IV antibiotic to treat it is Tazocin. I had it for months before they found the bug as regular antibiotics were no good. Lots of coughing and mucus, very debilitating. Apparently we with compromised are open to lots of infections.
take careLiam
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Finally my pulmonologist put me on Prednisone! Incredible recovery for me. On my fourth week at 10 mg per day next five days. Then 5 mg the following week and then script is over. Then new testing . Should have been on Prednisone when I had my first CT scan showing grew matter. Nothing wrong with trying and if bad side effects then stop but based on what predisone can do for inflammation of the lungs I do not understand why predisone is not given early. Best regards
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Definitely worth asking your doctor about, since there are many remedies to try. My husbands cough got much better when I read on one of these threads, or maybe on IPF Facebook pages, that taking Prilosec or other ppi can help. He had no symptoms of GERD, but the Prilosec definitely helped, so we think the cough was a symptom of silent GERD, which is very important to treat if you have ipf. Other remedies mentioned have been Fisherman’s cough drops, gabaoentin, and low dose morphine when other remedies don’t work.
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Yes coughing is so debilitating and so painful in the throat. I have IPF and find that I get coughing fits after eating dinner and when I’m trying to get to sleep. I think it’s a combination of tiredness and lying down. I just get tired about 8pm every evening. Sucking a sweet helps at night but also a cough medicine called Benylin. In the morning I find my throat is sore from the coughing the night before and I gargle with Disprin and this relieves the pain. Hope this helps
Liam from Ireland
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Hi Augusta,
I coughed for a year before finally getting the diagnosis of IPF. I started on Ofev in January of this year and my coughing has almost disappeared. I am convinced that the Ofev has helped. The side effects can be bad at times, but right now and l will take that over the constant hacking anyday?. Hopefully you can get some relief. Take
care-
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Hi Liam, have you tried raising the head of your bed. When I raised the head of my bed 2 to 3 inches my night time coughing decreased by about 90 %.
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Hi all,
I was told by my husbands pulmonologist & that raising the head of the bed 4-6 inches is ideal to reduce symptomatic or asymptomatic GERD. It can prevent microaspiration to the lungs which is thought to worsen the fibrotic progression. I was thinking if buying the sleep number bed where the head (& foot) elevation is adjustable. There are other alternatives like wedges to raise the head alone. Hope this helps!
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I have used Hycodan, a cough suppressant, for several years. It contains Hydrocodone, so you must take it with caution. Lately, the Hycodan by itself was not always adequate (@ 5ml 4x per day) so my Pulmonologist recommended the Tessalon Perles generic benzonatate (@ 1 capsule 3x per day). Latter helped me. Good luck!
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Cough comes and goes. Think it is a result of GERD and IPF. Sometimes a cup of hot water with lemon helps. I also have allergies but not food related. Some things that seem to set off my cough is laying down flat to sleep or rest, talking, drinking tea or a drink with caffeine (assume because of GERD). Rarely does a day go by that I don’t cough. Sometimes cough so much that I vomit. I do use cough drops or lozenges. Hope this helps.
I have had the cough for at least 5 years before diagnosed with IPF.
Marianne
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A word of caution about this coughing problem.
I have the early morning coughing problem to dislodge mucus and stuff from the back of my throat and the roof of my mouth and have had the problem for a few years before IPF diagnosis in 2015.
During a recent angiogram an observant nurse noticed two small swellings in my groin area that my weight loss had revealed.
I am now awaiting a surgeons opinion on two inguinal hernias at least one of which will require surgical intervention before it causes serious problems.
I believe that this has been caused by my heavy but necessary coughing over the past few years.
Bob Osborne
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Hi Bob, I’m Willie. I have Sjogren’s and Pulmonary Fibrosis so I’m battling a crippling fatigue and debilitating cough. I’ve just been told I have nodules on my lungs which weren’t there 6 months ago. God only knows what my future holds but I keep plowing through the days doing my best. Nothing seems to help the cough. I’m going to try the Fisherman’s cough drops which others have mentioned. Good luck to both of us.
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Hi Bob @bob-osborne, I’m glad the nurse spotted them and got you on track to have them repaired. I bet you aren’t the only one who has had hernias develop from coughing, but I haven’t seen it talked about much. Your story will help others, so thank you for bringing it up!
Best of luck with the surgical consult.
Christie
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hi
i tried omezparole 20mg twice a day. cut my coughing about 80%. GOOD LUCK Augusta. i also heard nexus works. -
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Michele, Prilosec is a brand name for the generic drug omeprazole. This anti-GERD medication should be available to all. Apparently there is coughing due to PF is associated with either silent or symptomatic acid reflex. Does anyone know if there is scientific data that confirms this?
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Hi Phyllis, yes doctors commonly refer to the correlation between GERD and chronic coughing. I don’t know if there is data showing that it’s causational for PF, but it’s definitely corrolary.
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The link below opens to a good article providing scientific evidence for the association of GERD with IPF. Also it includes good references. I tried posting the references but this website won’t send them for some reason.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6733342/pdf/tcrm-15-1081.pdf
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My husband was diagnosed with Pleuroparenchymal fibroelastosis (PPFE). He has a chronic cough and no symptoms of GERD. However, we were considering purchasing a Sleep Number bed with a FlexFit adjustable base for head elevation due to the correlation of GERD with IPF. Although a causal relationship has not been demonstrated, the hypothesis that microaspiration of gastric material playing a role in fibrosis even in asymptomatic cases is strong. His pulmonologist suggests head elevation of our bed. I know that we can consider acid reflux meds like Nexium and Prilosec or antacids, but I wondered if anyone bought this bed (it is expensive) and, if so, has it helped your cough or GERD symptoms?
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Hi all –
I always have a dry cough. I have IPF as well as GERD. Last week cough became a very deep bronchial and I began coughing up thick white colored phlegm. He prescribed steroids for 7 days. He knows I am not a fan of steroids as I have had adverse results from them in the past (before IPF). He prescribed 20 mg instead of 40 mg. He told me to watch out for yellow, green or brown colored phlegm as that would mean I would mean I had an injection. Also little energy and little appetite but no fever. My coughing gets worse as the day progresses and is much worse at night (probably because of the GERD). Doctor asked me if I was around anyone who was sick. My grandson has a cold and had an infection on his hand last week. So I am guessing that I picked up something from him. The cough reminds me of when I have had bronchitis but that was pre-IPF.
Still alot of coughing today but only on meds for 1 day so far. Hope it gets better quickly.
Marianne
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One more thing to consider right now is where you live. Although I live in SW Virginia, the smoke from the fires out west and in Canada has made it all the way here and affected the air quality. I have been staying inside because of it, but you might also want to be checking things like pollen counts and air quality reports. I have coughing at times too, but would never expected that the smoke from so far away would affect me here.
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I was diagnosed with IPF 4 years ago. When I first get up in the morning I start coughing with mucus. I never cough when laying in bed. I do use 2 liters of oxygen at night. To relieve my coughing in the morning I take a 24 hour Claritin (loratadine) and a generic Allergy spray (Fluticasone Propionate) into each nostril. That stops my coughing for most of the day. During the day to relieve a coughing spell (usually when I become winded) I place (believe it or not) a piece of “fireball” candy in my mouth and it stops the cough! Yes it burns but it does the trick.
Herb
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I started taking 2 NAC capsules about a month ago and my morning ritual of coughing up mucus for a half hour has almost stopped completely. As I write this, I’m thinking of this morning. I literally forgot about not having to clear my upper chest and throat area of mucus.
PubMed officially recognizes the scientific validity of NAC studies and trials for mucus clearance issues:
https://pubmed.ncbi.nlm.nih.gov/3893512/
Doctors have been using inhaled N-acetyl-L-cysteine to reduce mucus since the 1960s.<sup>23</sup> It breaks down mucus secretions, making them less dense and sticky:
https://www.lifeextension.com/magazine/2020/ss/protect-your-respiratory-system
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I have shared this one other time but will be willing to share this again. I have IPF and on Hospice for over a year. My in-home nurse prescribed Morphine Sulfate oral liquid. This not only helps immensely with the cough but helps the lungs open up a bit more.
It does have one drawback and that is it causes constipation which I have to deal with by taking laxatives but the trade-off is worth it.
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