Do others with IPF cough for 20 minutes every morning?

[Mark Koziol]

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.

[Allan Byron]

Hello,

I also cough  and have sinus drips inthhe morning. K am currently on Perfinidone 801 mg 3x a day. I also have recurrent cough during the day, so I always have halls candy

which helps me.

Allan Byrin

[Allan Byron]

Hello,

Have the same issue, which is refractory coughing most of the day. I have taken different cough meds, but they are only palliatives. I still go to the gym at least 3x a week and do threadmill and weights for one hour.  I observed I easily get tired not like before.

Allan Byron

[Susan Howitt]

Hi James

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.

[Cindy Sears]

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.

[Cindy Sears]

Sorry typo age is 64.

[Susan Howitt]

Post nasal drip is a B….. isn’t it, forever blowing my nose.  Is the phlegm related? don’t know.

[Cindy Sears]

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.

[Wendy Dirks]

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.

[James Burns]

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.

Thanks,

Jim

[Susan Howitt]

Hi Cindy

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?

[Susan Howitt]

Hi James

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.

[Maka Rebagliati]

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!

[Maka Rebagliati]

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

[Susan Howitt]

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.

[Steve Dragoo]

@jburns1210

Hi James,

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.

Stay well

Steve

 

[Diane Welmon]

• . 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?

Thank you

Diane

[Charlene Marshall]

Hi @dianecarol

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?
Sincerely,
Char.

 

[Steve Dragoo]

@dianecarol

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…

Steve

[James Burns]

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.

Thanks,

Jim

[Diane Welmon]

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.

Diane

[Diane Welmon]

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.

Diane

[Ron]

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.

Ron

[Bob Rawlins]

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

[Charlene Marshall]

Thanks for sharing Bob! I have no doubt this will help other patients looking to suppress the pesky IPF cough!
Take good care,
Char.

[Jess Schroeder]

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.

Good luck.

 

[Bert Maidment]

@steve-dragoo

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

 

 

[Steve Dragoo]

@bmaidment

Hi Bert,

Seems you are experiencing a lot and trying to stay strong. Thanks for sharing your insights. I know I don’t want to admit this lovely disease is progressive buttttttt…….

Stay well…

Steve

[Jan Shabra]

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.

[Charlene Marshall]

Hi Jan,

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!
Charlene.

Activity