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This topic contains 60 replies, has 17 voices, and was last updated by  Charlene Marshall 5 months, 3 weeks ago.

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  • #11268
     Charlene Marshall 
    Keymaster

    Hi Everyone,

    I recently had a gentleman comment on one of my columns about his experience with IPF. Thankfully he has mentioned that while in his 5th year of living with this disease, he is doing relatively well with strong oxygen saturations for the most part. A question he asked, which I unfortunately cannot help him with is about his productive cough in the middle of the night, which he says produces excessive phlegm. Since my cough is dry, more irritating and persistent than productive, I thought I’d connect with others on the forum and ask if anyone else struggles with phlegm and a cough during the night. If so, do you have any advice you could share to help eliminate it?

    Thanks in advance.
    Charlene

  • #11305
     Melvin L. McBride 
    Participant

    Hello y’all

    I remember the days when I had a dry cough!

    In 2005 I was originally diagnosed with Sarcoidosis, then my lung doctor set me up with an appointment in Minnesota in 2007. They diagnosed me with RA and interstitial lung disease. In 2012 they changed my diagnosis to IPF.

    Fast forward to today. I went through the dry cough and more then anything, it was annoying! Now, I to have Phlegm in my mouth and throat. Its irritating as heck because it blocks my breathing passage! My nose gets runny with minimal activity to!

    All I have to do is walk from my chair to the bathroom and I get the phlegm and runny nose along with that cough. My bathroom is a short distance from my chair!

    Sometimes I get that runny nose and phlegm and cough while sitting but its always worse with activity!

    I hope this was helpful!

    • #11313
       Charlene Marshall 
      Keymaster

      Hi Melvin,

      Welcome to the PF forums and I am so glad you were able to contribute to this topic for us!

      I always appreciate hearing from people who have lived with any type of interstitial lung disease, but especially with IPF for longer than the 3-5 years “prognosis”, so thank you for sharing. It just reinforces for me that the prognosis is simply just a number and doesn’t apply to everyone, so you’ve really given me renewed hope. Although, I am sorry to hear about the phlegm. I have a really dry cough, almost like a constant clearing of my throat which is excessively annoying as you say. With regards to the phlegm you experience when you are doing movement/activity, is there anything you do that helps alleviate the build up, or allows you to breathe better through it?

      I find a puffer helps me with my cough, although it doesn’t get rid of it by any means, it just controls it a bit more especially during physical activity like walking up stairs or my pulmonary rehab program. Has your Doctor given you any suggestions on what might help?

      I’d love for the person who asked the question about phlegm to see your response. Thank you again for sharing!

      Cheers,
      Charlene

  • #11315
     gil 
    Participant

    You all,

    My cough is usually dry except when allergies kick in, then the phlegm and running nose etc.  Perhaps for some of us phlegm is a problem related to allergies, perhaps for me it is a combination of both allergies and IPF.  I changed soap/shampoo, laundry detergent, etc and the night-coughing, etc went away.

     

    • #11321
       Charlene Marshall 
      Keymaster

      Hi Gil,

      Thank you so much for your contribution to this man’s question. I’m excited to start compiling some responses and get them back to him to see if any suggestions/ideas help him. I’m just curious, when you changed soaps/shampoos and laundry detergent, do you mean you changed to something scent-free, or was a particular scent helpful for you? This is an easy fix for folks to potentially try 🙂

      Thanks again,
      Charlene.

  • #11317
     Denny Watkins 
    Participant

    Charlene & Melvin,

    Regarding “struggles with phlegm and a cough during the night.”

    Melvin sounds almost exactly like me “Now, I have Phlegm in my mouth and throat. Its irritating as heck because it blocks my breathing passage! My nose gets runny with minimal activity to! All I have to do is walk from my chair to the bathroom and I get the phlegm and runny nose along with that cough. My bathroom is a short distance from my chair! Sometimes I get that runny nose and phlegm and cough while sitting but its always worse with activity!”

    The only thing different is that I don’t have the cough or phlegm during the night; only when I’m sitting up or with minimal activity like walking from my couch to the bathroom or standing up. I’ve been suffering with the phlegm and with both a runny and stuffed up nose for awhile. I have taken doxycycline & levofloxacin; tried Mucinex in various strengths but have seen no real change. Sometimes when my nose is so stuffed up and I can’t get the oxygen from the nasal cannula into my lungs and at the same time I also have phlegm in my throat so bad I can’t swallow, I get very short of breath and the %SpO2 drops significantly. The morning is the worst. Trying to clear the nose and trying to clear the phlegm from my throat and esophagus takes a long time. I drink water to help breakup the mucus in my throat. The nose blowing, the hacking, the sniffling, the snorting and the expectorating are just exhausting.

    I have an acapella PEP device on order.

    NOTE on PEP device:

    Positive Expiratory Pressure (PEP) therapy is used to mobilize secretions. PEP devices have been found to give independence to patients with chronic respiratory diseases as the therapy can be done when convenient for the patient and without the need for an assistant.

    acapella® combines the benefits of both PEP therapy and airway vibrations to mobilize pulmonary secretions and can be used in virtually any position allowing patients to move freely and sit, stand or recline.

    The pulmonolgist I see prescribed  600MG GUAIFENESIN 2/day & FLUTICASONE PROPIONATE NASAL SPRAY USP 50 mcg  1 spray each nostril, twice/day.   I took my first dosage of each this morning so we shall see if anything changes. 

    • This reply was modified 1 year, 6 months ago by  Denny Watkins.
  • #11326
     gil 
    Participant

    Charlene,

    I switched to products with more natural ingredients.  I now use a hypoallergenic detergent, “0% fragrances, Dyes, Artificial  Brighteners”  and similar for other stuff.  Sometimes I can’t help myself and I will use bleach and I can notice the difference it has on my skin and allergies. I now try avoiding all heavy chemicals, especially after reading how chemicals we use at home will damages our lungs, almost as bad as smoking.

    https://www.sciencedaily.com/releases/2018/02/180216084912.htm

     

    • #11330
       Charlene Marshall 
      Keymaster

      Hi Gil,

      Thanks so much for clarifying that for me, I wondered if the soaps, detergent, etc were similar to hypoallergenic. I’m really glad to hear it is making a difference for you! I think I am going to look for this in future as I don’t have allergies or a reaction but I’d like products that are as natural as possible. I’ve done some reading on the amount of chemicals in stuff as well, especially things that are airborne and we breathe in and I agree, it’s scary. I’ve started to switch over some products, but not a lot yet … I am trying to replace as many things as I can with pure essential oils. So instead of store-bought cleaners for the bathroom that have tons of chemicals in them, I now purchase the cleaners from the essential oil companies (mostly DoTerra) so at least I know what I am breathing in is natural and not full of chemicals.

      Hey, quick question for you: have you ever had sensitivity to toothpaste from medications? I am finding this lately and that the store-bought toothpaste burns my mouth and tastes really chemical-like to me. I am going to purchase the toothpaste that is all natural as well and see if this makes a difference. Not sure if this is just me?

      I hope you had a nice weekend!
      Charlene

  • #11328
     Ken Whitaker 
    Participant

    Took stem cell therapy.  New breathing treatment L-Gultathione plus.  Phlegm is all but gone   Four days no oxygen, execept when sleeping.  Folks there is something to stem cell.Lung institute Dallas

  • #11329

    Denny, I changed cannulas to a shorter, fatter sort of stubby one and the runny nose stopped by about 90%!  And I find when I am active, I need to keep my mouth closed because if I don’t, the nose will start to run every time.  I have to keep reminding myself to shut my mouth.  LOL.  Hope this helps you too.

    • #11332
       Charlene Marshall 
      Keymaster

      Hi Sandra,

      How are you? It’s been awhile since we’ve chatted and I hope you’re doing well! Thanks so much for commenting with your ideas on how to deal with phlegm. This is an excellent tip and one that is something easy enough to try for folks, just switching the cannulas. It is so fascinating to me what people have tried and figured out works for them. On Facebook, people have also been so generous in sharing their ideas /tips on how to help deal with this. I am just about to post them below, stay tuned 🙂

      I will keep your tips in mind for when I start dealing with phlegm. It seems that so many people deal with this, that I am wondering why I don’t (although I am glad that I don’t…) as my cough is just so dry and pesky. Did you have the dry, frequent cough before the phlegm developed?

      Thanks again for sharing your comments!
      Charlene

  • #11337
     Charlene Marshall 
    Keymaster

    Hello Forum Members,

    I really want to thank you for sharing all of your wonderful ideas, thoughts and experiences of dealing with phlegm. I am going to spend some time compiling this for the gentleman who asked the original question about dealing with phlegm. I am sure he will be thankful as well!

    I also wanted to share some of the feedback/comments that came from our Facebook post about this as well, for those who are interested:

    • Dan shared the following: “I find that one spray in each nostril twice a day with Dymista spray has reduced the phlegm running down the back of my throat. My coughing has been reduced a great deal”.

     

    • Sandra shared: “I now have developed consistent coughing jags which last sometimes for 3-4minutes. I cough up phlegm which is clear. I hate these jags. It happens anytime during the day. At night I have been prescribed cough syrup with codeine which allows me to sleep through the night”.

     

    • Connie shared: “Great comments! I get a lot of phlegm and take allergy medicine morning and night plus a saline nose spray. Seeing my doctor this week and plan to discuss this very thing”

    I will keep an eye on other comments to share with you all. I hope this is helpful!

    Cheers,
    Charlene

  • #11348
     gil 
    Participant

    Ken,

    Please tell us more about the stem cell therapy, are you part of a research group?

    Charlene,

    I haven’t noticed problems with toothpaste, if this changes I’ll let you know.

     

     

    • #11352
       Charlene Marshall 
      Keymaster

      Hi Gil,

      Thanks for your post, it has been a few days: how are you doing? I hope those allergies have settled for you!

      I agree with you, and I’d love to hear more from Ken about the stem cell therapy he is receiving. If you feel inclined Ken, we’d love hearing from you.

      Sounds good Gil, thanks. I am using a more gentle toothpaste now so I am hoping this will make a difference for my mouth which is really sore and using store-bought toothpaste stings for me now. I’m going to do some research into this to see if it is a common occurrence or if others have reported something similar. Stay tuned!

      Charlene.

  • #11365
     gil 
    Participant

    Charlene,

    Allergies are better, thank you.  I had a respiratory infection, I don’t know what triggered or caused it, it wasn’t fun.  It almost makes me afraid  going to  indoors places that may be crowed, e.g., church, mall, theaters… Today I went outside and enjoyed a walk and did a little shopping.  If tomorrow is nice, I will go for a drive and maybe run across some migratory birds and fowl.

    I am interesting in all IPF treatments, especially stem cell based therapy, it seems to me this approach may lead to a permanent cure. I plan on learning more about it and I am willing to participate in stem cell studies.

     

     

    • #11369
       Charlene Marshall 
      Keymaster

      Hi Gil,

      Thanks for writing, it is nice to hear from you! That is such a bummer about your respiratory infection, are you almost in the clear now? It is not fun, I agree as unfortunately I also have caught one but my Doctors today confirmed that it is bacterial vs. viral, which I suppose is a good thing because at least bacterial infections can be treated with antibiotics. Usually viral infections (ie. a cold) can’t be treated and we just need to wait them out. How was your drive or your walk? Hopefully the weather cooperated for you! It has felt really cold here again the last few days, and I am suffering from wicked headaches with the fluctuating temperatures. I don’t usually get them, but unless they are due to my respiratory infection, I can only guess that they are from temperates being so drastically different from day to day. Last week, we had a day of +14 degree celsius weather, and the next day it was -4! Anyway, I hope you’ve had an nice few days 🙂

      I also would like to learn more about stem cell therapies. I have done a lot of research/reading about it and it seems to be a treatment that really has the potential to transform many areas of medicine. I was listening to a talk not that long ago that was about how it can be used to re-generate unhealthy lung tissue. Now that a research article was recently published on this, I suspect this is where the talk came from. I am not sure how to direct you in participating in the studies, as I would also be interested in this, although I suspect stem cell therapies and what might be feasible could be different between the US and Canada. If I find anything out though I will let you know. Will you do the same for me?

      Cheers,
      Charlene

  • #11366
     Shaw Jennings 
    Participant

    Hi All,

    The phlegm discussion has me thinking that my allergies are possibly not the total cause for my phlegm buildup.  I have had allergies for years, but since last October I have experienced a more serious onset.  Mostly runny nose, post nasal drip and cough with some phlegm.  Simultaneous to the October flareup I received my first diagnosis of NSIP then IPF.  Until reading the latest string of phlegm related messages, I thought it was all or mostly due to allergies – maybe not.  I am seeing a new ENT and he has asked me to get a CT scan of my face.  I am not sure where he is going, but possibly he will narrow my phlegm diagnosis to allergies, IPF, or a combination of both.  In the meantime, I have used a variety of allergy medications – maybe too many.  Zirtech, Claritan and Benadryl.  Also my nasal sprays include, Dymista and Ipratropium.  All have helped to some degree, but none give me more than a few hours of relief.

    It seems from all or most of the comments the phlegm is a result of IPF.  Maybe I need to reconsider my personal belief that I just have severe allergies.

    I also would be very interested in hearing more from Ken Whittaker about his stem cell therapy.

    Shaw Jennings

     

     

    • #11370
       Charlene Marshall 
      Keymaster

      Hi Shaw,

      Nice to hear from you – I’ve been thinking of you and wondering how you are doing. I am glad to hear that the discussions re: phlegm might help with your understanding of whether you are experiencing allergies or potential IPF progression. I certainly hope it is allergies! Did your pulmonologist recommend/refer you to an ENT, or did you request this? My apologies if I have already asked you this question, I just am wondering after reading this string of posts whether or not I should start advocating for an ENT. I don’t have one right now, and don’t seem to have issues with phlegm at the moment but know I might in the future and it can take a really long time to get into a specialist, such as an ENT, here in Canada.

      Quick question for you: when you had your diagnosis of NSIP, was it long before your Doctor tested for or suspected IPF? My friend’s Mom was just diagnosed with NSIP, and she is scared they are missing IPF or not looking for it. When you shared that you had this diagnosis first, it triggered my memory to ask you … please only share what you’re comfortable with.

      I’ve had a few folks message me about getting in touch with Ken’s experience with stem cell therapy. I’ll see if I can touch base with him directly and ask him to share his experiences with the forum.

      Cheers,
      Charlene.

  • #11421
     Janis Bunch 
    Participant

    Hi all,
    I have chronic sinusitis which results in mucus/phlegm almost all the time. I have found that using a Neti pot twice a day, saline nasal spray throughout the day, and Flonase 1 spray 2 x day does help. I also take guaifenesin twice a day and generic Zyrtec each day.
    Janis

    • #11443
       Charlene Marshall 
      Keymaster

      Thanks so much for sharing your solution to the chronic sinusitis Janis! Much appreciated 🙂

      Quick question for you (and I apologize if I have already asked you this!) but are you on supplemental oxygen at all? I use it as needed, mostly for exertion, extreme heat/cold temps and for sleeping and sometimes I struggle with what I describe as “sore” sinuses. They just feel uncomfortable, tender and almost like they are inflamed, although I am confident this is just due to the prolonged oxygen use. I’m just wondering if some of the things you mentioned might soothe my sinuses as well? Something to consider for me for sure… thanks for sharing.

      Charlene

      • #11486
         Janis Bunch 
        Participant

        Hi Charlotte,
        No, I am not on supplemental oxygen at this time. But I was wondering if your oxygen has a humidifier? I think the saline nasal mist would be comforting. My sinuses were burning when I had a cold recently and the nasal spray helped.
        Take care,
        Janis

  • #11479
     Denny Watkins 
    Participant

    It has been awhile since I’ve had a chance to see what is happening in this topic. I became sick over night on Feb 23 and woke up very sick on Sat. Feb 24th. I actually had a cough overnight and woke up stuffed up, headache, dizziness and phlegm build up so bad it was hard to swallow and breathe. My wife, son and daughter-in-law all had the same symptoms in some degree or another. The illness lasted through about March 4th. There were some days where I didn’t get out of bed. I still have some left over effects from this including phlegm and dizziness from sinus issues. I am still taking Mucinex <span style=”color: #777777; font-family: ‘Open Sans’; font-size: 13px;”>600MG GUAIFENESIN 2/day & FLUTICASONE PROPIONATE NASAL SPRAY USP 50 mcg 1 spray each nostril, twice/day. Just got my PEP Acapella device today so I can’t report on how it works. It seems any standing up or movement causes dizziness and the phlegm/mucus to get worse especially in the morning. </span>

    • #11483
       Charlene Marshall 
      Keymaster

      Hi Denny,

      It’s nice to hear from you, although I am so sorry you’re experiencing this illness! I can’t imagine how scary the mucus/phlegm build up must be, and how frustrating it must be to feel so dizzy with a headache. Have you gone to see your doctor to check whether it is bacterial or viral? By the sounds of it, you’re on antibiotics which must mean it is a bit bacterial, which I suppose is good in that hopefully it will respond to antibiotics, although I wish you didn’t have to deal with it at all. How are your other family members? Recovering well I hope!

      I wonder if my headaches and dizziness (for about a week or so, daily) are due to a sinus issue? I am bit stuffed up but not a lot. I was also in a car accident in December and think I’m experiencing a bit of whiplash so I suppose it is hard to decipher everything. I’m terrified of getting sick as everyone in my office has a cold or flu, so I’m doing my best to wash my hands all the time and wear a mask. I suppose sometimes it happens though. I really hope you’re on the mend soon Denny, and thanks for letting us know how you are.

      Take care,
      Charlene

  • #11488
     Charlene Marshall 
    Keymaster

    Hi Janis,

    Thanks for sharing. Unfortunately no, my oxygen doesn’t have a humidifier on it. I use a portable concentrator most often, it is the Phillips Respironics SimplyGo machine and then I use a number of different sized canisters on trolleys around the house. I do use an essential oils diffuser beside my bed that seems to help, and I have a few different nasal sprays which I should give a try to see if this helps my sinuses. I’m having trouble with my sinuses this week unfortunately and I’m thinking they might be responsible for my random headaches and dizziness, almost every day this week! I’ll give your suggestions a try, thanks so much for the advice.

    I hope you are well!
    Charlene

    • #15710
       Denny Eliassen 
      Participant

      I used clear lung and CL2 from WEI and it took care of my phlegm problem. Also had GERD for a while, I took a product from WEI for 2 weeks, went to the GI and had a manometry test done and there was zero trace of GERD so I believe in their products.

      • #15753
         Charlene Marshall 
        Keymaster

        Hi Denny,

        Thanks so much for getting in touch with me, I hope you’re doing well!
        Really good information to hear about the WEI products, glad you could share your experience with us. I actually made a forum post awhile back about Clear Lung and wondered if anyone has tried it so I am happy to hear you have. I think I’m going to purchase this as well, given your experience, plus I don’t think it would harm me in any way so worth a try in my opinion. What was the product you used from WEI for GERD called, do you remember? I have a colleague who struggles with this and it may be worth mentioning the product you’ve found to her to see if it helps her symptoms too. Thanks for any / all help you can provide!

        Regards,
        Charlene.

  • #11777
     Anonymous

    JUST SING !

    My husband, who died of IPF caused by his exposure during 9/11 and the months after, had a dreadful cough and all the Rx prescribed by docs never helped.  Then we found a doc at UPENN medicine who explained that singing vibrates the bronchial and the ares around the vocal cords….it works!

    David made it a practice to sing 2 or 3 times a day for 10 minutes or so…I can still hear his dobedobedo’s….as long as he did this, his coughing stopped.  We tried to educate doc and nurses about this but, in general, they thought we were crazy….so…give it a try for a week or so…and

    JUST SING

    • #11800
       Charlene Marshall 
      Keymaster

      Hi Susan,

      I love your response! I am actually trying to learn the guitar right now which is inspired by a friend of mine and her late husband. She says anyone can sing, especially when I try and claim that I can’t so this is worth a try. She swears that even if it doesn’t sound good, it will lift my spirits and make me feel better 🙂

      Just love the story about this and about your David…thank you so much for sharing!

      Warm regards,
      Charlene.

  • #15672
     David Lavold 
    Participant

    My dentist turned me on to a gum called Spry, it was for dry month but it helps the phlegm problem when I’m coughing, also the lady at OFEV suggested putting lemon in your water which also seem to help.

  • #15702
     Charlene Marshall 
    Keymaster

    Hi David,

    Wow – thanks so much for sharing this information with us, it could help so many people on this forum! Who would have known that a gum could help with the phlegm problem, I never would have thought about that. Can you buy the gum anywhere, or is it specific through the dentist? Really helpful information, and a pleasant remedy to help with this side effects for once… we’ll take it 🙂 Thanks for the update about lemon in your water as well, I’m sure this information will really intrigue a lot of people!

    Take care,
    Charlene.

  • #15705
     David Lavold 
    Participant

    Charlene, I buy it at the vitamin store but I think you can get it other places as well.

  • #15747
     Robert Carlson 
    Participant

    Charlene,

    Ref: Dealing with Phlegm
    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.

    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 excessive phlegm.  I have mentioned this to several doctors but they don’t seem to find it that significant, but it is to me.

    I have been unable to find a means of eliminating the problem, but have found the following to be helpful in making the 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 the phlegm.

    RGC-Bob

  • #15752
     Charlene Marshall 
    Keymaster

    Hi David,

    Thanks so much for getting back to me on this, really good information to know! I think I’ll check it out next time I go to the herbal store where I look for my vitamins/supplements. I’m (thankfully!) not yet plagued by the phlegm issue but do find I struggle with dryness so no harm in trying a gum to help with this. I really appreciate your sharing.

    Charlene.

  • #15766
     Rod Fulmer 
    Participant

    Hello,

    I was diagnosed with IPF as well as severe Emphysema 3 years ago. Primary to my having to leave the job I was doing was the chronic runny nose and congestion that occurred with the slightest of exertions. Already having reduced lung function, the runny nose or sinusitis made it to where I could not breathe through my nose and the shortness of breath was intensified. My saturation would drop, often into the 60’s, and I would search for a place to sit until I was able to reduce the sinusitis to the point that I could begin to breathe through my nose.

    I was referred to a pulmonologist after a bout with pneumonia three years ago. He diagnosed the IPF. I guess the runny nose was outside his expertise as he passed it off. I was accepted into a clinical trial in Birmingham, AL, but the pulmonologists there did not address the sinusitis either. I have been to an ENT that prescribed a nasal spray that did not help. I am now with a different pulmonologist and he has prescribed a different nasal spray. Have not tried it yet because my pharmacy had to order it. I have considered going to an allergist, but I know it is not driven by pollens because I have it whether I am in Denver, or LA, or Miami, or here in Alabama.

    Mornings are especially difficult, seems that I have stored the drainage all night and drainage begins early. 12-15 Kleenex later, I can begin morning hygiene. I use a concentrator at night, set on 6. I am less than compliant on using the portable tanks when I am up, usually limiting my outings to short trips and not using oxygen. About the only thing that helps is 4-6 Benadryl a day, but then I am drowsy and even more resistant to being up and about.

    I feel for those few of us that experience sinusitis in addition to being short of breath. Hopefully, someone will find a good remedy for this problem so that the difficulty of living with IPF is not intensified. Have a good day.

  • #15773
     Charlene Marshall 
    Keymaster

    Hi Rod,

    Thanks so much for writing us, and welcome again to the PF forums! I appreciate the time you took to provide us with an update on your experience of living with IPF 🙂

    I’ve not heard about the runny nose or sinus issue very much for people living with IPF, but I can imagine how frustrating that would be for you and how it would contribute to the shortness of breath for sure. I would also imagine it would make using oxygen difficult as the running nose would drip into the tubes. Do you use supplemental oxygen yet? Hopefully you have it at least as an option for you, especially if your sats dropped into the 60s.

    As a side note, do they think the pneumonia caused both your PF and Emphysema? I’m hearing more and more about this, and it scares me that such a basic infection (ie. pneumonia) can have such a negative, long-lasting impact on our lungs.

    Oh, sorry I hadn’t gotten to the post yet about oxygen so please discard my question above. Have you tried any type of vapour rubs (I’m sure you have) to try and open up your airways a bit to encourage getting the drainage out? Sounds like you’ve tried so much, but this might be an option to consider, just be careful which ones you use against the oxygen cannula as some can be flammable. Not that I want you to have to consider this, but I’ve had quite a few friends with Cystic Fibrosis (not PF) who have had issues with their sinuses and actually had them surgically repaired. While surgery isn’t ideal, it does sound like it fixed the chronic sinusitis problem for them.

    Goodluck and keep us posted on how you’re doing if you can. Happy holidays Rod!
    Charlene.

  • #15807
     David Lavold 
    Participant

    Rod, I go through the same ordeal every morning, my doctor suggested a saline nasal spray, Walgreens makes it and has it, just called Saltine Nasal Spray.  You just spray in nose and then blow it out, helps me a lot.

  • #15821
     Charlene Marshall 
    Keymaster

    Hi David,

    That is really helpful information to know, thanks for sharing – I am sure many others will benefit from this knowledge as well. Do you use oxygen as well? Sometimes I am cautious about what to spray in/apply to my nose with the risks of oxygen (ie. vasaline is flammable, did you know that? Something I just learnt 🙂 ) and was wondering if this would cause any issues for those of us using supplemental oxygen?

    Have a great day!
    Charlene.

  • #15828
     Rod Fulmer 
    Participant

    Thanks David and Charlene for reply. As I mentioned, my new Pulmonologist prescribed a prescriptive nasal spray, Ipratropium 0.06% NAS SP 15ml (165), and I have been using it about a week. Seems to help during the day and evening, of course wears off through the night and so mornings are not helped. But a positive. Again, thanks for your replys.

  • #15851
     Charlene Marshall 
    Keymaster

    Hi Rod,

    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.

    Regards,
    Charlene.

  • #15875
     Robert Carlson 
    Participant

    Charlene,

    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.

     

    RGC_Bob

  • #15889
     Charlene Marshall 
    Keymaster

    Hi Robert,

    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!

    Charlene.

  • #15932
     paula 
    Participant

    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.

  • #15949
     Charlene Marshall 
    Keymaster

    Hi Paula,

    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…

    Charlene.

  • #17103
     Raymond C. King 
    Participant

    Hi Charlene,

    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.

    Ray King

    • #17137
       Charlene Marshall 
      Keymaster

      Hi Ray,

      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.
      Take care,
      Charlene.

  • #17105
     Bill Mattila 
    Participant

    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.

    • #17138
       Charlene Marshall 
      Keymaster

      Hi Bill,

      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!

      Charlene.

  • #17156
     Raymond C. King 
    Participant

    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.
    Raymond King

  • #17161
     Charlene Marshall 
    Keymaster

    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 🙂
    Charlene.

  • #17175
     Raymond C. King 
    Participant

    Hi Bill,

    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.

    Ray King

    • #17201
       Charlene Marshall 
      Keymaster

      Hi Ray,

      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?

      Charlene.

  • #17243
     Raymond C. King 
    Participant

    Hi Charlene,

    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?

    Ray

    • #17264
       Charlene Marshall 
      Keymaster

      Hi Ray,

      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,
      Charlene.

  • #17259
     Denny 
    Participant

    Hi Charlene,

    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…

    • #17265
       Charlene Marshall 
      Keymaster

      Hi Denny,

      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!
      Charlene.

  • #17275
     Denny 
    Participant

    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.

    • #17311
       Charlene Marshall 
      Keymaster

      Hi Denny,

      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!

      Take care,
      Charlene.

  • #17320
     Denny 
    Participant

    Hi Charlene,

    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.

    • #17322
       Charlene Marshall 
      Keymaster

      Oh interesting!
      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 🙂

  • #11322
     Charlene Marshall 
    Keymaster

    Hi Denny,

    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.

    Thanks,
    Charlene

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