ModeratorDecember 28, 2018 at 10:57 am
Thanks so much for your reply, and sharing the name of the nasal spray your pulmonologist described. It’s always good to know/hear of what others are using to alleviate their symptoms, so I do hope it continues to work for you during the day and evening. I hope you have a nice weekend.
MemberDecember 28, 2018 at 7:07 pm
I don’t know how you find the time, but thank you for what you are doing for the group who are trying to deal with PF.
Ref: Dealing with Phlegm
In the literature there are numerous mentions of a “dry cough” being symptomatic of PF, but not much about excessive phlegm. I am one of those diagnosed with IPF who now experiences the problem. I have mentioned this to several doctors but they don’t seem to find it that significant.
I have been unable to find a means of eliminating the problem, but have found the following to be helpful in making my situation more manageable.
1) I found the use of “Nasacort” which is an over the counter allergy nasal spray helpful.
2) I have also found “Azelastine Hydrochloride” which is a prescription nasal spray helpful. I will only use one nasal spray at a time, once a day at bedtime.
3) I have also tried some of the over the counter “Expectorant” medications containing guaifenesin (supposed to loosen mucus) such as Mucinex. I believe they are helpful.
4) I have found the use of a saline solution nasal rinse, morning and night, to be very helpful in allowing me to breathe thru my nose.
5) I have also found that gargling with a saline solution several time a day very helpful in my efforts to expel phlegm.
ModeratorDecember 30, 2018 at 9:11 am
Thanks so much for kind words about my role int he forums. It sure is busy sometimes, but I feel very lucky to be part of this wonderful group. I’ve learnt so much and made wonderful friends too!
I remember reading about the dry cough being characteristic of IPF, but agree with you that I didn’t come across much in the literature about significant phlegm, although it seems to be a real problem across many folks on this forum are experiencing. Sorry to hear you’re one of them! I am really hoping I don’t develop this unpleasant symptom, as the dry cough is annoying enough…
Thanks for outlining the tips of what have helped you deal with this symptom, I am sure it will help many folks on here who are looking for ways to deal with this. I so appreciate the time you took in sharing this with us!
MemberJanuary 1, 2019 at 5:59 pm
I hate the phlegm. That and the bloody noses.
Sometimes I have a dry cough, but other times I start coughing for no apparent reason and I hack up a major fur ball. Reminds me of the glue we used to have in school. Forgot what it was called, came in a tin bottle with a brush. It would be clear and when it dried you could actually roll it into a ball of sorts. Not very often it is clear. Usually a bright white or white with a yellow tinge in it.
What I hate the most is when I am talking all the sudden if feels like I have a major ball of phlegm at the top where the collar bone meets, I lose my voice as this junk is blocking my airway as if I have a major chest cold. And until I cough it out, talking is very hard to do.
ModeratorJanuary 2, 2019 at 8:53 am
Thanks for your contribution to this topic thread – I cannot imagine how frustrating it would be to deal with the excessive phlegm issue. While this isn’t a widespread/known symptom of IPF in the literature, it sure seems as though many people experience it or have to deal with it unfortunately. That must be so unpleasant to deal with the cough and coughing something up…
I have the dry cough which I find is quite pesky, but nothing compared to what it sounds like you deal with. In terms of the bloody nose, is this something you get often? This is an unusual symptom that I have and I always thought it was dryness but maybe there is some sort of link to IPF too? Hmm…
MemberFebruary 26, 2019 at 11:48 am
I have been reading the comments about the cough and phlegm problems. For the last 6-8 weeks, I have developed a phlegm cough that seems to buildup in my lungs. It seems quite prevalent at night but also in the daytime. I can hear it rattle in my lungs at times and after some coughing, I can cough it up. I do get a runny nose sometimes but I think it is due to my coughing and not the cause of the cough.
We are having some real cold/snowy weather and after knowing your and Paula’s problems from the cold weather, I have been wondering if this is just a result of it. I have tried different nose sprays. Since I was able to get rid of the usual dry cough by taking NORCO Hydrocodone, codeine cough syrup would be too much codeine. When I had the dry cough problem, I didn’t have the phlegm problem but that was months ago.
I have read over and over Megan Zetter’s post in the “Dying from IPF” post and she had expressed that in her father’s later days with IPF he was getting a massive buildup of mucus. I’m a nervous type of person so I’m watching for symptoms of doom all the time. mucus.
My last check with my Pulmonologist in January concluded that my IPF had just moderately progressed since my last 6 months checks. I didn’t have the phlegm cough then. Any suggestions other than what has been published in this column? I’ve tried most of these suggestions except the prescription meds.
Thanks for sharing your vast knowledge on all the IPF articles.
ModeratorFebruary 27, 2019 at 10:55 am
So nice to hear from you, thanks so much for writing but sorry to hear you’re dealing with this new issue! I also know I owe you an email back, just haven’t been able to tend to as many personal emails with the forum content so active. I’ll try to get back to you as soon as I can! As always, I enjoy hearing from you…
Did this start after a cold for you at all Ray? I know sometimes different viruses can trigger a change in our lungs, such as the production of phlegm. You also might be right regarding it being weather-related, unfortunately. Phlegm can also make our breathing more difficult due to the lungs being “full”, which is a big difference from the dry, chronic cough, as pesky as it is. Have you consulted your doctor about the issue? I know lots of people have been able to manage the phlegm through various options, might be worth a conversation with your pulmonologist about, especially since the January meeting revealed just a moderate progression in the disease.
I don’t have any other suggestions, as I really don’t deal with this much. I have more the dry, chronic cough…
Thanks for writing and hope you can get this sorted out soon, I can imagine it is quite anxiety-provoking.
MemberFebruary 26, 2019 at 3:29 pm
I handle my excess with a vibrating vest. And mucinex works for me. I mentioned to the lung man and he agreed but don’t take too long.
ModeratorFebruary 27, 2019 at 10:56 am
Oh, I think you’ve mentioned the vibrating vest before which is something I think many others should inquire about if it helps you with excess mucous. @Raymond-c-king, might this work for you as an option? Thanks for sharing Bill and really glad this gives you some relief!
MemberSeptember 27, 2022 at 4:45 pm
I’m trying Mucinex now. How long is too long to stay on it?
MemberFebruary 27, 2019 at 5:53 pm
Hi Bill Mattila,
The HFCWO Vibrating Vest sounds very interesting. Thanks to Charlene for alerting me about your post. I may look into it.
Do you wear it day and night? Which model do you have? My chest is really getting sore from the constant coughing. Does your health insurance cover some of the cost? Do you live in the US and maybe have Medicare?
Thanks in advance.
ModeratorFebruary 27, 2019 at 7:45 pm
No problem at all Ray, happy to help! I’ll tag @bill-mattila for you in your response so hopefully he can answer some of your questions. Please let me know how this works for you if you end up looking into it more or trying it out. Talk to you soon 🙂
MemberFebruary 28, 2019 at 10:54 am
Thank you for the response about the “Vibrating Vest.”
I see you live in the cold snowy area of the US as I do. I live in Idaho. Does the cold weather affect your lung congestion?
The price of the InCourage is quite high. I imagine you had to get your doctor to prescribe it? I too have Medicare and my secondary insurance is Federal Blue Cross/Blue Shield. I spent months trying to get BC/BS to accept paying for my Esbriet medication so I would bet they would really fight the cost of the vest.
I looked at the vest on the internet. It mentioned that evidently you only use it at different times for the treatment? It didn’t really explain the procedure. If it works in the night, do you wear the vest while sleeping? If so, I am not sure I would be able to use it as I have a frozen stomach and I am on a feeding tube for 12 hours at night. The tube enters my intestines thru my belly just below the rib cage and the vest or vibrations might interfere with that process. My tube is there all day long too so I don’t know what problems that might cause. I guess I should contact the Mfg. to see what they could tell me about that as I’m sure you wouldn’t know about that.
You also mentioned you are taking Mucinex and that seemed to help also. The next time I go to the drug store, I will try it. Thank you for all the information.
Again, a lot of thanks to @Charlene for keeping me posted about the phlegm problem solutions.
Thank you, Bill, for all your information.
ModeratorMarch 1, 2019 at 9:03 am
I hope you’re having a nice day so far. The sun is shining here, I am sending some of it your way …
I am tagging @bill-mattila for your reply, so he can hopefully answer some of your questions regarding the vest. Him and I have been corresponding about this privately a bit too as I’ve heard of it being used for CF patients but not with other PF patients, so I am curious to learn more 🙂
Take care, and hope you find some solutions to reduce the phlegm a little bit. Is it still just as prominent for you?
MemberMarch 2, 2019 at 2:24 pm
Thank you for your update.
Today, the sun is shining bright so thank you for sending it to us. Looking at the local weather forecast, I think we are going to be missing a lot of the snow that was coming from the West Coast this whole next week. In the Snake River Valley of Idaho, we will only be getting some rain. Looking at the overall weather for your area, it appears you will be getting some wet weather moving in this evening and night.
I did appreciate Bills comments to me about the Vest and me probably not being able to use it due to it also vibrating the stomach area and my feeding tube section.
I did like his suggestion about the Mucinex to help with the wet coughing. My NORCO Hydrocodone took care of the dry coughs but this new phylum lung congestion just started. I did have a few of the Day/Night Mucinex in our cough medicine storage from a long time ago so I tried it. The box said it expired in late 2017 but I took it and it did seem to work, at least in the day time. At night, it seemed to work for a couple of hours but seemed to cause some acid reflux and was hard to swallow. I did swallow the pills rather than putting them in my J-Tube as they are hard capsules filled with the Mucinex liquid and hard to cut open. I guess I could have made a small hole in them and extracted the liquid with a syringe but that is a hard procedure. I probably wouldn’t have had the reflux problem if I could have taken them with food. But since I am not to eat at least 4 hours before bedtime, that procedure was out. I could probably purchase the 12-hour Mucinex but they are quite expensive and are also non-crushable like the Esbriet capsules were. I see my regular Health Care Provider doctor on Monday and I will see if he can prescribe it for me and maybe my Insurance will cover it. Sometimes the insurance co-pay is the same price as the medication if it can be purchased over-the-counter at a drug store.
I better close for now and get something done before the day goes by. I appreciate your correspondence. How have you been getting along?
ModeratorMarch 2, 2019 at 8:21 pm
Thanks so much for writing, and as always, it is lovely to hear from you! Sorry for the delay in getting back to your email(s) – I’ve been quite tired this week trying to stay caught up, and longer emails I need to set aside the time for and get better at doing that. I hope to get back to you this weekend!
I’m glad you had the sunshine today, it wasn’t shining here but the last two days were beautiful! Finally some of the thick, thick ice chunks are melting which is nice. I’ve never seen so much freezing rain before, we had several weeks of it at least one day per week so it is quite thick. Now everything is covered in a light dusting of fresh snow, as it snowed today with the temperatures getting warmer so its probably quite slippery. I have a big drive ahead of me tomorrow as I am taking my Mom to a show in Toronto so I am glad its warmed up, as our main highway will be clear, if anything, just wet. Should be a good, but tiring day – 5 of us are going, including my Mom and I are going to see Ellen Degeneres 🙂
I’m really glad Bill’s suggestion worked for some relief for you, at least in the day time and a few hours at night. I wonder if the Doctor on Monday might have a solution about another way to take the Mucinex, especially if it was helpful for you to relieve some of the symptoms? Hope your appointment goes well on Monday, I’ll be thinking of you!
Enjoy the rest of your weekend and thank you for writing back about our friend. I am quite concerned I haven’t heard from her too, I’ll write back to that email soon. Just quickly, I’ve been doing pretty well actually! I am done with winter and ready for spring, but with it being March now, it is only a few weeks away which is nice. Daylight savings is also next weekend, which means the days will be longer and this always makes a difference for me too. Really looking forward to that, and otherwise, I am just trudging forward with various hobbies and committees. Thank you for asking! 🙂
Talk to you soon,
MemberMarch 2, 2019 at 7:32 pm
The cpap machine is for obstructive sleep apnea- not related to IPF. My cough is just from bronchial phlegm and may be related to IPF but may be just allergies. I cough during the day but not much and not a dry cough. I have 2 Chinese herbs that were given to me for free that I am going to take for the phlegm. If it works then I will be sold on all of the Chinese herbs because that will be the 4 thing helped or CURED! It’s almost like I went into remission after taking the lung products. Maybe the usual interstitial pneumonitis is not as fast scarring as some other IPF diseases. I have a problem with this site sometimes but I would like to see some of the people on this site try the lung products for a couple weeks. Wouldn’t it be cool if they worked for others!!! No side effects and documented proof from many others that they work…
ModeratorMarch 2, 2019 at 8:24 pm
Thanks so much for getting back to me and explaining a bit more about the herbs you’re going to take for the phlegm. I was really curious to hear, and I hope the cough is just allergy related and not connected to IPF. I am so excited to hear if the herbs work for you, and I know you have such positive experiences with the Wei products. It’s so great, and I still can’t believe you’re playing hockey so well despite this cruel disease….amazing! I know others are hoping to try the products too, and every time they mention it or hope for some personal ‘testimonials’, I try to send them our correspondence on how well the products work for you. I hope others try it as well. I need to do some configuring of my budget ahead of ordering anything right now I think, but I know others are curious about looking into them. Did Wei give you the products to see if it helps with phlegm? I am sure they are happy to learn how great the products have worked for you!
Take care and thanks for connecting!
MemberMarch 3, 2019 at 9:17 am
Charlene, after I took my second month of the 3 herbs for my IPF the sales person sent me a month supply of clear lung, CL 2, CL3, and jade for lung immunity. Each one had a different purpose. I used up the clear lung taking it as a preventative and at that time I had no issues. After the 3 herbs for the IPF my endurance playing hockey improved immensely (I was close to giving it up because of my breathing problem and was depressed). I got more clear lung at a health store (cheap) but used that up. My phlegm issue has been going on for 2 months but my pulmonologist told me to take Zertex at night and that seems to be helping so maybe it’s allergies.
ModeratorMarch 4, 2019 at 6:42 pm
Thanks so much for getting back to me and sharing the information about the Wei products that have seemingly worked well for you. Did the sales person send you more because you could attest to the fact it was working? I’m confused why they sent you more for free, other than they genuinely hope it works for you, but I am glad they did, especially since you had such good results. I wonder if the clear lung product you’re referring to is the same stuff I saw in the pharmacy… it was a liquid form of something called “Lung Flush”. In any case, so glad the products are working for you and here’s hoping that your phlegm problem is just allergy related and will subside soon!
MemberMarch 4, 2019 at 8:10 pm
I don’t know why the sales person (not there anymore) sent me three different sets of pills which were all for different conditions of the lungs. The newer salesperson didn’t know why either. I am thinking they were to help with any lung condition and there is probably a big markup on them. Or, maybe that is why he doesn’t work there any more (fired). Or maybe he had more authority.
ModeratorMarch 4, 2019 at 9:37 pm
Thanks for getting back to me Denny, I didn’t know if you had worked out some kind of a deal or something based on how well they were working for you. Glad you got the three samples free though, and that they were of benefit to you 🙂
MemberSeptember 21, 2022 at 12:18 pm
IPF for several years, just diagnosed January of this year. My cough was dry for years, but now I have terrible mucus. First I have a coughing fit that goes way down into chest, and then if I can put in a throat lozenge, it helps me bring up white mucus, then my nose is so full that I have to blow it repeatedly and continue to spit out mucus until I’m done. I’m on IBS medications and flonase and ipratropium bromide sprays. Sometimes a Neti pot is helpful.
MemberSeptember 22, 2022 at 2:17 pm
I wish I had something to help you. It seems I am the same. Just getting up in the morning I have excessive mucous and phlegm. I’ve told the Pulmonologist, but she has nothing to offer other than OTC meds like Mucinex. I take 30mg of Pseudoephedrine which helps some. I’ll be reading the responses to this. I also have this late in the evening as well.
MemberSeptember 23, 2022 at 9:29 am
I know this is going to sound weird, but it has worked for me.
I have never believed in acupuncture, but when my spouse found relief from back pain through acupuncture, she pushed me until I gave it a try (mostly to stop her pushing me). To my amazement, it helped! It doesn’t get rid of the phlegm entirely, but it lessens the phlegm significantly and makes life much easier for me.
Like Charlene, I also find eucalyptus helpful for opening airways.
MemberSeptember 23, 2022 at 1:03 pm
Hello to All,
I have read this thread with a great deal of interest. I have struggled with cough and phlegm off and on. This is what ultimately lead to my diagnosis in 2018. The ‘chronic’ allergies, winter cold, hacking, runny nose, stuffed sinuses in February that just would not quit just started to stretch longer and longer, along with shortness of breath. . . For a time, I felt like I should have owned stock in Kleenex.
I’ve been on OFEV since the summer of 2021. In December 2021, I started doing breathing treatments (nebulizer) of Albuterol 3x/day and Hyposaline Solution (3%) 4x/day. I also raised the head of my bed 6 inches. I was instructed to have at least a 4 hour period of not eating before bed time, to insure there was no potential of any GERD situation due to stomach actions. [Basically treating everything else but IPF]. Short story – Cough and phlegm have almost gone to almost zero. A significant reduction. I take the generic equivalent of Alegra (180 mg) every day that really helps keep allergies at bay.
I used to require supplemental oxygen to walk around. Now I carry it with me, but rarely have to use it. I have a continuous O2 Sat monitor, that I use when I’m out and about to insure I’m not in trouble. So I know my experience is not just wishful thinking. I have also lost 70# in the last year – It all adds up.
Best to all.
MemberSeptember 24, 2022 at 8:04 am
I think there are more symptoms with IPF than what is documented vs Esbriet use. My mom has had a runny nose for years. She uses nasal sprays prescribed by her allergist (ENT). That moderately helped and with CPAP at night has seems to help with her thick mucous cough ( IPF usually noted in to cause dry cough). In additional her chest CT shows bronchiectasis with suspect that IPF can effect the bronchi as well.
ModeratorFebruary 23, 2018 at 9:22 pm
Thanks so much for contributing your thoughts and sharing your experience to this question. As I mentioned above to Gil and Melvin, I am glad to be able to share some people’s experience with the man who asked me the question in hopes that they will help him.
It sounds like your issues with cough and phlegm Denny seem to be more when you’re upright/vertical vs. horizontal like laying down, would that be a fair statement? I really wonder what makes the difference for patients, as some people say they notice it more when they are laying down….strange. I can’t imagine how difficult it is to breathe when you have the mucous, stuffed up nose etc. Denny! I feel for you, as I’ve not yet experienced this regularly (knock on wood) but I did get a really bad cold last summer and I was terrified that I wouldn’t be able to breathe. I am sure amidst all of the things you’ve tried, have you also tried remedies like Vicks vapour rub and/or any essential oils that are particularly good at opening up nasal passages like Eucalyptus? I know some people don’t believe in these types of remedies, and that is totally ok, I just wanted to share in the event you were interested in trying them. I diffuse Eucalyptus beside my bed when I have a cold, and then use the roll-on ball of pure menthol under my nose and it seems to help a bit. Probably is similar to the Vicks vapour rub, I just like it better because it is 100% natural vs. having chemical components.
The PEP device you mention sounds really interesting, thanks for sharing it as I’ve never heard of this before. Do you need to have a prescription to order it? It does sound similar to chest rehabilitation techniques that are meant to mobilize secretions, but definitely a lot more convenient if a patient can do it on their own. Is it like a vest? I’ll have to google it and keep it in mind if I ever get to the point of needing it on the regular. It would be so good to have though for chest infections or colds I would think!
Goodluck with the nasal spray. Please let us know if it makes a difference, I’d love to add this as a potential thing to the list for the individual who originally asked the question about phlegm. This might give him some ideas to talk to his Doctor about.
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