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  • Dealing with Phlegm.

    Posted by Charlene Marshall on February 20, 2018 at 3:27 am

    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

    allan-byron replied 1 year, 5 months ago 24 Members · 68 Replies
  • 68 Replies
  • melvin-l-mcbride

    Member
    February 22, 2018 at 3:08 pm

    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!

    • Charlene Marshall

      Member
      February 23, 2018 at 3:47 am

      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

  • gil

    Member
    February 23, 2018 at 6:04 pm

    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.

     

    • Charlene Marshall

      Member
      February 23, 2018 at 9:13 pm

      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.

  • denny-watkins

    Member
    February 23, 2018 at 7:19 pm

    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. 

  • gil

    Member
    February 24, 2018 at 2:54 am

    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

     

    • Charlene Marshall

      Member
      February 26, 2018 at 2:54 pm

      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

  • ken-whitaker

    Member
    February 25, 2018 at 7:12 pm

    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

  • sandra-seabrooks-bush-connor

    Member
    February 26, 2018 at 1:30 pm

    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.

    • Charlene Marshall

      Member
      February 26, 2018 at 3:02 pm

      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

  • Charlene Marshall

    Member
    February 26, 2018 at 3:37 pm

    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

  • gil

    Member
    February 28, 2018 at 5:05 pm

    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.

     

     

    • Charlene Marshall

      Member
      March 2, 2018 at 3:55 am

      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.

  • gil

    Member
    March 6, 2018 at 4:22 am

    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.

     

     

    • Charlene Marshall

      Member
      March 7, 2018 at 2:53 am

      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

    • allan-byron

      Member
      September 29, 2022 at 5:54 pm

      Went to stem cell therapy in Arizona for treatment. It didn’t help a bit, just wasted money and time.

       

      Allan Byron

       

  • Shaw Jennings

    Member
    March 6, 2018 at 5:02 pm

    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

     

     

    • Charlene Marshall

      Member
      March 7, 2018 at 2:59 am

      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.

  • janis-bunch

    Member
    March 13, 2018 at 7:58 pm

    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

    • Charlene Marshall

      Member
      March 14, 2018 at 1:31 am

      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

      • janis-bunch

        Member
        March 16, 2018 at 12:39 am

        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

      • pfcaregiver

        Member
        September 22, 2022 at 3:38 pm

        Charlene do you have water bottle with your oxygen to add humidity for your nose?

  • denny-watkins

    Member
    March 15, 2018 at 10:56 pm

    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>

    • Charlene Marshall

      Member
      March 16, 2018 at 12:26 am

      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

  • Charlene Marshall

    Member
    March 16, 2018 at 1:21 am

    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

    • denny-eliassen

      Member
      December 18, 2018 at 11:00 am

      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.

      • Charlene Marshall

        Member
        December 21, 2018 at 8:46 am

        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.

  • Deleted User

    Deleted User
    April 13, 2018 at 8:12 am

    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

    • Charlene Marshall

      Member
      April 13, 2018 at 6:54 pm

      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.

  • david-lavold

    Member
    December 15, 2018 at 4:16 pm

    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.

  • Charlene Marshall

    Member
    December 18, 2018 at 8:34 am

    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.

  • david-lavold

    Member
    December 18, 2018 at 9:22 am

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

  • robert-carlson

    Member
    December 20, 2018 at 5:16 pm

    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

  • Charlene Marshall

    Member
    December 21, 2018 at 8:44 am

    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.

  • rod-fulmer

    Member
    December 21, 2018 at 10:22 am

    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.

  • Charlene Marshall

    Member
    December 22, 2018 at 8:09 am

    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.

  • david-lavold

    Member
    December 25, 2018 at 10:28 am

    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.

  • Charlene Marshall

    Member
    December 27, 2018 at 8:33 am

    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.

  • rod-fulmer

    Member
    December 27, 2018 at 9:23 am

    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.

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