November 19, 2020 at 2:53 pm #26188
I am on OFEV and my testing has been relatively steady the last 2 years, very little decline on PFT. I can tolerate OFEV with immodium, although it is not great on the stomach. I am on oxygen at night, but otherwise only during exercise. I am at about 50% lung capacity so still too early for transplant. My main issues are coughing up phlegm every morning for about 20-30 minutes. I also get coughing spells during the day which are somewhat productive (phlegm), especially with any exertion such as walking up a flight of stairs.
I recently got a backpack to hold an oxygen tank and use that on walks with the dog. It helps tremendously as I got low on O2 even on relatively flat walks with our dogs. I am at 3000′ of elevation which I think may make my O2 levels suffer compared to sea level. I was just wondering if others suffer similar coughing issues in the morning? Is it a sign of continuing to scar even though on OFEV? I am 65 and was extremely active before IPF. I still play golf 3 x a week, with a cart now instead of walking, but I cough a lot on the golf course. It does not seem strenuous to swing a golf club, but I get low on O2 if I go to driving range and hit golf balls.
November 19, 2020 at 3:38 pm #26189Mark KoziolKeymaster
Hello James, please notify your physician of the cough you have been experiencing in the morning. 20-30 minutes every morning is an awful lot of coughing. I did have extended coughing periods before transplant but usually there were after I experienced a period of exertion. Those were not fun times. It is suggested you may have to adjust the way you lay when you sleep. This could possibly help you alleviate some of the coughing. I’ve had a rt single lung transplant and I have been told to sleep on my left side. This seems to work for me. Regarding golf, golf is more strenuous on your body than you think. The bending over to tee up wrecks havoc on me currently because of the compression of the diaphragm. Now after I tee it up I take a minute for my o2 to rise back up to normal. Take care, Mark.
November 19, 2020 at 4:39 pm #26190
That morning cough is terrible isn’t it, I cough until I gag. I have just come out of hospital after another exacerbation, and they have organised a physio for me, but to be honest I get most of my phlegm up before she even gets here (11am) and get some more up during the day. I cannot walk my dogs any more, (sob) even on the flat, luckily they are getting on in age at 10 & 11 and I have a huge garden, used to have 8 dogs, now only 2, they used to get walked from 5 to 10 kms per day before this struck 4 years ago, mine is poison induced from my ex work place, took 25 years before the diseases manifested them selves. I am now 74, on O2 24/7 and not a lot of lung capacity left, my decline has been very sudden in the last six months.
I refused Orfev and Esbriet, didn’t think they would do any good as I have 4 lung diseases at once. I have found one cough medicine that does calm things down some what if I can get to it before the really bad bout starts, and that is Bronchocod, don’t know if it is available where you live. By the by I cough badly when my O2 gets, low even on fairly high oxygen, if I do something to strenuous.
Take care, Sue
I live in mini mountains, part of the Massif Centrale in France, though not as high as you.
November 19, 2020 at 4:45 pm #26191
Hi James, Your case sounds just like mine. I was diagnosed with IPF in 2019. I am 54 only on 02 at night and if I want to exert myself . I cough first thing in the morning a lot clearing a large amount of phlegm. About 20 to 30 mins. Then I still cough throughout the day and move phlegm but not as much as in the morning . My Dr says I have a lot of inflammation in my lungs. I have not found a good solution to control the cough. Sometimes I wonder if it is related to postnasal drip.
November 19, 2020 at 4:48 pm #26192
Sorry typo age is 64.
November 19, 2020 at 4:50 pm #26193
Post nasal drip is a B….. isn’t it, forever blowing my nose. Is the phlegm related? don’t know.
November 19, 2020 at 4:59 pm #26194
Hi Susan I see you on here often. I feel like I know you a little! Yes postnasal drip can cause phlegm and cough, of course I am not a Dr. just a retired nurse. Praying for strength and good health for you.
November 19, 2020 at 5:10 pm #26195Wendy DirksParticipant
Hi, James – I don’t have IPF, but a different form of PF – hypersensitivity pneumonitis and I also cough for some time after I wake up in the morning. I occasionally have horrendous coughing fits during the day and then when I lie down at night as well. I use ambulatory oxygen only. I am receiving palliative care along with my care from the interstitial lung disease clinic and recently had a chat with one of the doctors from the hospice about controlling the cough and she told me there really wasn’t anything she could prescribe for it. I also cough until I am gagging and get muscle cramps in my intercostal muscles that are extremely unpleasant. The only thing that helps is cough drops, believe it or not – just plain old honey and lemon over the counter cough drops. I used to keep a jar of honey by the bed as that also helps a bit but the cough drops are even better. I know this may not work for everyone, but it’s literally the only way I can lie down and actually sleep at night. I use a steroid nasal spray to help with the postnasal drip as well.
November 19, 2020 at 5:44 pm #26196
Thanks for all the replies. I guess I am not alone with the morning issues. I am on benzanotate (Tessalon perles) but they do not seem to be effective. I will certainly try cough drops as suggested and I guess it is just part of the condition and not indicative of further damage. It is annoying, uncomfortable, and embarrassing in COVID situation. When people see me coughing I am sure they are scared I am contagious. I think I am fortunate I am still able to do many things without oxygen at this point.
November 19, 2020 at 7:19 pm #26197
Thanks for you kind words, what on earth causes the post nasal drip with our conditions? cannot see the relationship at all, what has something in the lungs got to do with something in the head?
November 19, 2020 at 7:29 pm #26198
I can see people backing away from me in supermarkets when I cough even though I am very obviously wearing nasal prongs and a back pack oxygen system and clear visor, can’t wear a mask. I have even had some one tell me to go home and stop spreading my germs!! but with this wretched Covid people are getting paranoid and even ugly from what you see on the net and yes France is one of the very badly hit places. We are in lock down again.
November 25, 2020 at 1:22 pm #26247Maka RebagliatiParticipant
Hello James, my husband is now in an advanced stage of IPF and he coughs for at least 20 minutes in the morning which leaves him exhausted, he is on oxygen 24/7. Nothing seems to help but as Susan mentioned, he thinks it is related to post nasal drip. Actually today the GP gave him a prescription for nasal drops, hopefully they will help.
thanks for sharing your experiences!
- This reply was modified 1 month, 3 weeks ago by Maka Rebagliati.
November 25, 2020 at 1:32 pm #26249Maka RebagliatiParticipant
My husband suffers from iPF and he is now on oxygen. It is so sad seeing people looking at us with fear when he coughs even though they can see the oxygen tank and he wear a face shield. Actually we went to see our GP this morning and even though we were the only ones on the waiting area, one of the other assistants kept looking at us constantly. I asked our doctor’s assistant to move us to a room while we waited. Do people actually think that somebody with an oxygen tank could have covid? Today I thought about putting a sign hanging from his walker that says PULMONARY FIBROSIS- NO CONTAGIOUS!
I don’t know but it makes my husband very uncomfortable.
thank you for sharing your experiences
November 25, 2020 at 2:11 pm #26250
Oh yes Maka I really think people do think we are infectious even with nasal prongs and an oxygen tank. I once answered some one (before Covid) that told me to stop spreading my germs, that * My problem was 100% fatal and 100% non infectious and thank you for your concern* made them as uncomfortable as I had felt, not nice I know but then neither were they. BUT on the whole I am treated well in super markets and shops.
November 26, 2020 at 6:56 pm #26271
I recently saw an article about COPD patients trained on how to help clear their lungs. Basically, they lay on their left side using a pillow to elevate the hips raising the diaphragm and lower lung for about 5 minutes then repeat on the ride side and then the stomach. Laying on the stomach can be difficult for some especially with hips raised but the lower lobes need it. So I sit on the edge of the bed and lean over as far as I can and gently tap up and down on my back as far up as I can reach. If my wife is available she is far too willing to smack my back for me. LOL. Repeat this several times per day if necessary. It has helped me especially since I got super sick 10 weeks ago.
EGCG has helped my cough so some friends have noticed. Also, I have been using Serrapeptase for over 2 years with good success knocking out a lot of phlegm. But a MAJOR caution – you cannot take it anywhere close to other medications or food because it sees both as dead protein and it eats dead protein. That’s why it has been used for many years to help with liver scar tissue. Some say it may help in the lungs too but after 2 years I’m not sure about that. However, I did reduce my dosage and stopped everything when I was sick. Didn’t even eat for 6 days and barely drank any water. In the beginning, I took it too close to metformin once – wish I hadn’t done that.
Serrapeptase is measured in serrapeptase units (su). Doses appear safe up to 1,000,000 su daily. I have taken over 400,000 su daily but take about 250,000 now. Make sure it has no other supplements and is measured as su.
December 2, 2020 at 12:15 pm #26325
- . Hi Steve, this is not about coughing although I do have some. Just joined here and just diagnosed with PF. Trying to read anything I can find and have been blessed by this forum. My question is I have seen several abbreviations that I am not familiar with like EGCG. Can you please tell me what that means?
December 2, 2020 at 1:09 pm #26328
Welcome to the forums, I’m glad you’ve found us. It’s such an amazing community of support here, please let us know how we can help or if there is any particular information you’re seeking and we’ll do our best to follow up. I just wanted to share that EGCG stands for: Epigallocatechin gallate and more information can be found about it in its relation to IPF by clicking this link: https://www.nejm.org/doi/full/10.1056/NEJMc1915189
Does this help?
December 2, 2020 at 4:16 pm #26331
Hi Diane – yes all the acronyms can be confusing. There is a forum here that discusses the efficacy of EGCG (green tea extract) somewhat because it was being used in a trial. Apparently, the success with the right kind od EGCG and proper dosage was successful that the team released the study early.
Hope that helps you…
December 2, 2020 at 12:39 pm #26327
I think it is Green Tea Extract that can be purchased as capsules. I think that is what Steve was saying helps his cough, although it claims to be helpful for other issues. I have not seen it listed as helpful for coughs, but it seems to be relatively safe since it is green tea extract and clearly green tea is universally thought to be beneficial. I will certainly give it a try because Benzanotate (Tessalon Perles) does not seem to be helping me at all and it clearly has side affects associated with it.
December 2, 2020 at 4:48 pm #26332
Hey Jim, before I was diagnosed I had that horrible cough and was put on Tessalon Pearls also. Didn’t help me at all. Now that I have been diagnosed and on oxygen that has really cut down on the cough. I know sometimes it had to drive my hubby nuts.
December 2, 2020 at 4:52 pm #26333
Thank you also Charlene for replying. Now that I learning my way around here I am finding a wealth of information. It is good to be informed because my pulmonary has mentioned that he does not know much about this disease. Thank you for the link, I will check it out.
December 3, 2020 at 9:38 pm #26338RonParticipant
For those who suffer from coughing primarily after waking, I would urge you to give consideration to the idea you might have a condition called gastroesophageal reflux disease (GERD) on top of your IPF. GERD is often associated with IPF. It occurs most often during sleeping hours when stomach acids make their way into the esophagus and irritate the lining of your throat. Steady or frequent coughing is a result, sometimes along with frequent sore throats.
I developed a severe case of GERD four years ago (I have had IPF since 2007). I never experienced anything I would call heartburn, but I did get sore throats. Over time I lost my voice and had to quit radio announcing. After two weeks of no voice and another two weeks to get an appointment, I finally got in to see an otolaryngologist (AKA ENT or Ear, Nose, Throat doctor.) He immediately diagnosed it as GERD and prescribed 2 weeks of OTC Prilosec followed by an indefinite term of prescription proton pump inhibitor.
The doctor also said to lift the head of the bed about 8 to 10 inches. You can use cinder blocks or buy plastic bed lifters online or in some general merchandise stores.
It took several weeks to get my voice back although it never recovered enough to resume my on-air radio work. The prescription for a proton pump inhibitor drug has been changed several times over the years. I read somewhere that long-term use of these drugs can create other problems.
I found that once the GERD was subdued I was able to manage simply with the bed elevated and no drugs to treat GERD. I now use an adjustable bed and sleep with the head elevated.
There are some foods and drinks that it is recommended to avoid as well. You can look those up online by doing a search on “GERD”.
BTW GERD has been a factor for me in several cases of pneumonia as well. It finally took training from a home healthcare speech therapist to get me eating the right foods, swallowing properly, and avoiding aspirations as well as GERD. I was aspiring on food and drink which was getting into my windpipe, and developing an infection in my lungs.
I hope you find this information helpful and enlightening.
December 4, 2020 at 6:24 am #26339Bob RawlinsParticipant
Great feedback everyone!
I have been on O2 24/7 for almost 5 years!
Coughing has been a bit of an issue. Morning is the worst until I get my nose cleared. I believe there is nasal drip at night for sure.
But the things that come out of my nose each morning are nothing short of scary, lol!!
I use a saline nasal spray and once I’m clear use flounaise spray as well a couple times a day. That seems to help as well.
Ask your Dr about a medication for your coughing as well. These practices have helped quite a bit.
Hope this helps
December 4, 2020 at 4:13 pm #26348
Thanks for sharing Bob! I have no doubt this will help other patients looking to suppress the pesky IPF cough!
Take good care,
December 4, 2020 at 9:00 am #26340Jess SchroederParticipant
I have IPF (diagnosed about 3.5 years ago) and take Esbriet. Your description of the morning cough is exactly what I go through each day (plus runny nose). My pulmonologist has not come up with any secrets to get rid of this and says that coughing up the mucus is a very good thing so as to avoid pneumonia. Therefore, I just deal with it. I do take Benzonatate too (sometimes), but it only seems to help if I have a dry cough, which is rarely.
I also do an inhaler and two types of nasal sprays, but not sure if they help much.
When I wake at night coughing, I often feel some level of heartburn and take a chewable antacid that helps. This may be related to GERD. The night time coughing is also less severe if I am careful not to overeat at dinner or in the evening and eat a light dessert, if any. Drinking lots of water during the day also helps.
I also play a lot of golf and find that after my morning bout with coughing, I have good luck taking a Mucinex pill before playing golf or doing something else where I might need to avoid a daytime coughing fit (like going to the dentist, etc.). The Mucinex is helpful.
December 4, 2020 at 2:21 pm #26343Bert MaidmentParticipant
Steve – You can add me to the long list of IPF patients with pesky, persistent, exhausting cough. I was diagnosed with IPF 3 years ago however my cough had plagued for years before that. Now my cough starts in the morning a few minutes after waking up and can last 5-30+ minutes with some phlegm production, spats of coughing through the day, and 5-30+ minutes again as I get into bed at night. Sometimes, I cough so long and hard that I pass out, get tremendous headaches, and strain my abdominal and chest muscles. My O2 sat drops precipitously during coughing bouts (even though I am on O2 24/7). When a coughing spat quells, it leaves me exhausted and depleted. I have tried a lot things to suppress the cough and found that for me none of the over the counter cough suppressants work, none of the “natural” supplements or homeopathics work. I will list the things that seem to work for me (nothing has worked 100% of the time):
– I sleep sitting up right (sometimes in my recliner)
-I concentrate or apply biofeedback techniques and controlled breathing
– I take cough medicine prescribed by my pulmonologist (promethazine/codeine – CAUTION – this is an opioid medication, discuss with your doctor). The promethazine is an antihistamine and tends to suppress postnasal drip and drippy nose: codeine is an opioid and tends to suppress coughing.
– I take pantoprazole to reduce gastric acid production and tends to reduce GERD (gastro-esophageal reflux).
– I take acetaminophen or ibuprofen for the headaches and body aches.
Even doing all these things, I still have frequent bouts of coughing, but for the most part, less intense and shorter duration which has helped me cope with the pesky symptom. Everyone is different and medicines affect people differently, so what has tended to work for me, may not work for others. Likewise, what has not worked for me, may work for others. As an aside and meant to provide a little levity: my cough has produced and strengthened my 6-pack Abs or so I thought. When my son reviewed my last HRCT scan he sadly reported that I did not have 6-pack Abs but he thought he saw a 1/4 Keg! Did I mention that I am a little overweight? My heart goes out to my fellow IPF sufferers, we need to support and care for each other. I hope this info helps someone….BERT
December 8, 2020 at 5:19 pm #26413
December 5, 2020 at 11:54 pm #26376Jan ShabraParticipant
I also have had the intense mucus cough, especially after eating. Two barium swallow tests proved negative for aspiration. However, a bronchoscopy showed bile entering the esophagus and causing aspiration of the lungs. Suggested remedy – fundoplication. Wrapping top part of stomach around the base of esophagus and tighten. The side effects of never being able to vomit or belch, have much gas and bloating, eating 5-6 times a day and a very restrictive diet is turning me away from this surgery. Has anyone had this surgery and did it help the mucus cough? I can’t imagine living the rest of my life with this constant cough and using sheets of paper towels and kleenex.
December 6, 2020 at 8:29 pm #26394
Thanks so much for sharing your thoughts, though so sorry to hear you’re dealing with the mucus cough! A few people have talked on the forums about the fundoplication surgery, I just can’t remember who off the top of my head. However, if you go to the ‘Activity’ page of the forums ( https://pulmonaryfibrosisnews.com/forums/activity/ ) and search ‘fundoplication’ in the search tap on the right hand side of the page, this will bring up the previous conversations about this operation. Hopefully that helps? Take good care!
December 8, 2020 at 3:43 pm #26406Rod DannerParticipant
I have a cough, although it doesn’t go on quite as long as with the OP. Mine is most prevalent at bedtime and in the morning, but will also occur during the day. I often cough so hard and long to expel mucus that it causes cramps in my intercostal muscles in the back and in my transversus thoracic muscle. The cramps are quite painful. I discovered a device on the internet called the Air Physio that is an Australian product. http://AirPhysioglobal.com for the US market, the device is shipped from IL. I have waited a few weeks of use before posting about the device, but I believe it works. There are many positive reviews, mostly from COPD and Asthma sufferers. It uses an Oscillating Positive Expiratory Pressure to assist in dislodging mucus, thus making it somewhat easier to expectorate. It does cause coughing sometimes during and after use. It does seem to make the mucus thinner and less tenacious causing less work (hard coughing) to get rid of it. It certainly seems to help reduce the coughing when I go from vertical to horizontal at bedtime. When you use it, you can feel the vibrating pressures in your chest as the steel ball is raised and lowered by your exhalation. It is also supposed to assist in lung capacity, but I can’t attest to that until my next PFT. It does give me some relief so I wanted to recommend it. Your mileage may vary, but I thought it was well worth the $60 expenditure.
December 9, 2020 at 12:10 pm #26423
Try a wedge pillow for sleeping, certainly helps alleviate the cough, though now I have had to get my son in law to make a wedge type frame to go under my mattress as I need to have my head even higher to be able to breathe and sleep. Also you could, if you sleep alone, put bricks under the feet of the bed head to raise it up.
I really sympathize with the muscle cramps, they are awful, mine seem to come in waves even when not coughing.
December 8, 2020 at 7:16 pm #26414
Wow, that is really interesting Rod, thank you for sharing! Addressing or getting relief from the chronic, painful and frustrating cough of IPF is a popular topic of discussion on our forums so I’m sure this will spark many people’s interests. Thanks for writing!
December 10, 2020 at 12:22 am #26436Rod DannerParticipant
Hi Susan. I have already been using a wedge pillow and the head of my bed has been raised. I decided to try an experiment last night and sleep flat. It was with less coughing as I had been experiencing with the wedge. It was successful and I’ll give it another try tonight. It’s the same way for me with the cramps. I also get them when not coughing.
December 9, 2020 at 11:00 am #26419MarianneParticipant
I was diagnosed with IPF 1 1/2 years ago. I had a cough for about 5 years before diagnosis. Doctor said it was GERD. I cough some every day. It is worse if I talk. Mine is usually a dry cough. I tend to cough more when reclining – whether to sleep, dentist office, massage, etc. Sometimes I drink a cup of plain hot water and that seems to help relax my throat muscles. I have some allergies which are animal and plant related. I find if I am cleaning house or close to the floor for any reason I cough more. Use over the counter cough drops. Sometimes they help but usually they don’t.
I am on OFEV and tolerate it pretty well.
Hope this helps.
December 10, 2020 at 8:10 am #26439
I too was originally diagnosed with GERD because of cough. When the endoscopy showed only mild signs of irritation they did a chest Xray and and voila, you need to see a pulmonologist and do some further testing. That was the beginning of the answer which turned out to be IPF (no real answer after all). I was never a smoker and never worked in harsh conditions etc. My cough is very productive in the mornings or when I get low on O2 due to exertion without enough O2. However even when it is productive it takes a lot of effort as in I cough extensively and and many of the coughs do nothing. I am going to try the Airphysio product mentioned earlier and available on Amazon and see how it goes.
I get up so much mucous each morning it’s ridiculous but if something helps do this more effectively I am all for it. I was prescribed Symbicort by one doctor but my pulmonary therapist suggested that with IPF being a restrictive disorder and Symbicort is designed for obstructive disorder, she thought I should ask another doctor’s opinion and we decided it was not worth0 the side effects and would not be likely to be beneficial.
I also get coughing spells after talking or laughing. It is very uncomfortable because you just start coughing and can’t stop even though it is not really productive in most of these cases, plus you are around other people or on the phone. I will certainly try cough drops as a solution as well.
Thanks for all the comments and suggestions,
- This reply was modified 1 month ago by Charlene Marshall. Reason: tagging
December 10, 2020 at 9:34 am #26440GaynorParticipant
Thank you Ron, really useful information. I wake up and then cough for at least 20 minutes. The other contributors also provide some excellent advice. Thank you
December 10, 2020 at 11:01 am #26441
James/Jim, you are so right about Symbicourt, it nearly killed me on the second dose (night, first day time dose was bad enough), I cramped up all over and couldn’t move, couldn’t breathe properly, if I could have got to the telephone, by my bed, I would have rung for help it was that bad. I was given it when at the very beginning they thought I had IPF, no I have CPFE ++, really not recommended for my conditions that are very restrictive, I also have GERD but Omiprazole works well for me, or if really bad I can resort to Gabapentine . Your description of your cough is exactly like mine in all aspects. I like talking !!!!!!!!
Take care every one Sue
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