• mark-koziol

    Member
    December 14, 2020 at 7:01 pm

    Hi Elaine, yes this is common because your father was diagnosed with IPF. Patients with IPF usually do not have a productive phlegm producing cough. Patients with PF will have a a productive cough more often than not. That’s not saying your father will never have a productive cough because about one a week I would have one. Hope this explains a little better for you. Mark

  • Deleted User

    Deleted User
    December 15, 2020 at 11:55 am

    Yes, thank you so much!

    • mark-koziol

      Member
      December 15, 2020 at 4:13 pm

      You are most welcome, Elaine!

  • bobbie-hovey

    Member
    December 15, 2020 at 9:14 pm

    I was recently diagnosed with IPF and have a cough every day producing phlegm. What is the difference between IPF and PF? I am using the nubulizer every 6 hours as needed.

     

     

    • mark-koziol

      Member
      December 16, 2020 at 7:54 am

      Hello Bobbie, IPF falls under umbrella of PF which also falls under the umbrella of interstitial lung disease. The cause of IPF is unknown where the cause of PF is known. The cause of this usually being an autoimmune disorder or a specific environmental hazard. Most patients of both  diseases will have a chronic cough. Most IPF patients will have a dry cough but some patients will have a productive cough producing phlegm. Both diseases have a high mortality rate and the hope is the fibrosis remains stable and doesn’t progress. Take care, Mark

  • jofac-ohandlin

    Member
    December 17, 2020 at 12:13 pm

    Mark,

    Thank you for the explanation,  it helps my understanding. I am an IPF sufferer of 7 years, and not producing significant phlegm, yes, some at regular / irregular intervals but not as yet worsening. I take Carbocisteine tablets occasionally on demand if it feels needed to loosen it.

    Thank you Elaine for the question.

    Joe

    • mark-koziol

      Member
      December 17, 2020 at 12:43 pm

      Hi Jofac, you are welcome!

       

  • george-x-ferguson

    Member
    December 17, 2020 at 4:15 pm

    I have been diagnosed with ILD. I have a cough that has a lot of phlegm, but I can’t bring it up. It is hard, because I am on the phone all day. I take medicine nicknamed, the “pearls,” or Benzonatate. Any thoughts on how to dry up the phlegm?

    • mark-koziol

      Member
      December 19, 2020 at 7:40 am

      Hello George, regarding bringing up your phlegm I have heard of a piece of medical equipment that is mainly used for cystic fibrosis patients. It’s a vibrating vest. I don’t know if this would be applicable to your situation but you can ask your physician about this piece of equipment. I hope you get your remedy. Take care, Mark.

  • Deleted User

    Deleted User
    December 20, 2020 at 8:01 am

    You’re welcome Joe. I’m learning quite a bit here and hope you are as well. Take care.

    Elaine

  • ted-ted-fecteau

    Member
    December 20, 2020 at 10:43 pm

    @mark-koziol and others

    Hello, I was diagnosed with NSIP, a form of PF and IPF (I think), and used to have phlegm that I could not cough up. But I, over the last year or more, have been able to cough up enough during the first hour or so after awakening, so the phlegm now only occasionally sticks in my chest or throat. But during the earlier difficulties, my NZ Hospital respiratory physiotherapist gave me a small hand sized implement called Pari O-PEP (Oscillating Positive Expiratory Pressure) made in Germany by the Pari company. When breathing in through the nose and out slowly and completely through the mouth and Implement, a steel ball inside is caused to oscillate/vibrate causing the lungs in turn to vibrate helping to dislodge the phlegm in the lungs helping it to be coughed up and spit out into a tissue. This worked well for me. I hope this helps.

    • mark-koziol

      Member
      December 21, 2020 at 2:58 pm

      Hello Ted, thank you for sharing this valuable information. I am pleased this medical device has helped you with your phlegm. Best wishes, Mark

      • rod-danner

        Member
        January 22, 2021 at 9:54 am

        Hello Ted,

        It seems that oscillating pressure is a treatment that is common in the southern hemisphere. I have been using a device called an Air-Physio that is made in Australia. It is the same concept with the steel ball vibrating as you exhale. I have found that when I use it before bed especially, it tends to cut down on some of the coughing that occurs when I actually lie down for the night. Interestingly enough, I ran across it on Facebook and decided to give it a try. It does seem to help. I think it is also available on Amazon but when I bought it was $10 less expensive on the company’s website. It shipped from Illinois, so no long wait. I do think it tends to loosen up the phlegm.https://www.airphysioglobal.com/info-order-usa-v240869689?gclid=Cj0KCQiAjKqABhDLARIsABbJrGnr1Wlc3ph2DDXBv-58XDRyERcd6T3lRLz6m2bp3pmQpCEIVNKsF6oaApNXEALw_wcB

         

  • dana-kelley

    Member
    January 13, 2021 at 10:53 pm

    Hello, I’m new on here and am learning to navigate the site. Question: does everyone have trouble tolerating the OFEV? I’ve read it’s a lot about your diet, so as I am starting my first dose tomorrow, I’m going to eat very carefully at first and gradually add foods as I tolerate. I’ve had this for 8 or more yrs and they’ve just put a name to it. IPF. Dr said very slow progressing for me, but who knows future. Now I’m mild/moderate is what he said. Hopefully OFEV will work for me. After reading everything I can from every source I am afraid. I’m really a strong woman and will not succumb easily. Any support is greatly appreciated.

    • Charlene Marshall

      Member
      January 15, 2021 at 12:19 pm

      Hi @danakelley

      Thanks so much for writing re: OFEV and I’m really glad you’ve found our forums for support. Welcome!

      I had a lot of trouble learning to tolerate OFEV, I’ll never forget that experience. I actually had to go off it a couple of times, and slowly titrate back up on the dosage before my body would handle it. The side effects were really rough, but I didn’t want to deal with the sun sensitivity of Esbriet as I love to be on the beach. Nonetheless, I did learn to tolerate it and have very little issues now. Here’s what helped:

      1. For the first week on the full dosage (the 3rd time trying to tolerate it) I took an Imodium proactively/before taking it. The oral Imodium tablet didn’t help at all, but the sublingual dose (under the tongue) did wonders for me. I always carry some around in my purse, they are a bit more pricey than the regular oral tablets but were so much more effective for me.

      2. Avoid dairy – I switched initially to all non-dairy based products as much as I could. I’ve recently gone back to this as well, so I consume coconut milk (unsweetened) and other non-dairy products.

      3. Always ensure something is in my stomach when I take the Ofev, and I prefer to have something high in protein, I find this helps. I usually have a larger meal than I normally would when I have to take my Ofev, so my breakfast and dinner meals are larger than my lunch.

      4. Lots of water with the tablet. I try to drink a full 80z. glass of water before and after the tablet.

      Gooduck and let us know how it goes. I’ll be thinking of you!
      Feel free to reach out anytime,
      Charlene.

  • ben-robinson

    Member
    January 14, 2021 at 2:20 pm

    Phlegm or mucus is a sign of inflammation only remedied by prednisone.  I say where there is smoke there is fire. Mucus is the smoke inflammation is the fire.  Bursts of two 20 mg tablets for 5 days every 4th week is the best medication I have going.  The 7.5 mg per day maintenance between.  This way there are no side effects. I have NSIP autoimmune PF.  MCTD ILD.  Hope this helps to discuss with your doctor. I had to fight with mine for years to work it out. One too little and one to much. I discovered the bursts myself with trial and error. I found it ineffective after a week anyway. Side effects are a known concern with prednisone but not at these dosages.

  • ben-robinson

    Member
    January 14, 2021 at 2:39 pm

    Ofev is a problem for everyone stomach   Acidy type of activity.  Gets worse as months go on   The right food helps   The type of food varies by person to person.

  • rthorntonbresnan-net

    Member
    January 14, 2021 at 5:59 pm

    Phlegm, I used to have a lot of it, but being on a steady diet of 10mg of prednisone really helps the coughing for me and the phlegm. Then my doc added and enhalent called Flovent HFA 110 mcg. I take 2 puffs twice a day. I am getting the phlegm back. Not much and only first thing in the morning. But it is enough to let you know it’s there. I think the Flovent might be the cause, but hopefully it is doing it’s job. I can put up with the phlegm. Have  good evening everyone.

    • mark-koziol

      Member
      January 15, 2021 at 7:52 am

      Hi Randy, thank you for sharing. I have had a a single lung transplant and usually have a short coughing period when I wake up and sit by the bed. The cough is not productive. You should notify your doctor about the inhaler maybe causing you to cough up more phlegm. Take care, Mark.

  • bill-mattila

    Member
    January 19, 2021 at 5:33 pm

    I have fits with my mucus. I do Mucinex  everyday at least the maximum (2400mg a day) so it’s a bear to regulate. I also have a vibrating vest that works. But you have to do it at least 1hr a day or more. I have had IPF for a long time, but didn’t do anything about it. I didn’t know I had it. So I went to lung man and got the news but now I’m on oxygen at times work etc. But I am learning how to read about what people do for themselves. Don’t be afraid to suggest treatment. You know what works and what doesn’t. At least I get the crap out of my lungs most of the time. Good luck everyone! William Mattila

     

  • Charlene Marshall

    Member
    January 20, 2021 at 4:55 pm

    @bill-mattila

    Hi Bill,

    Thanks so much for sharing what helps you reduce the mucous coughing fits that so many of us can relate to. I can attest to the vest being effective, and I’ve heard many patients using Mucinex as well. I have no doubt others will benefit from your post, so thank you for sharing. Be well!
    Charlene.

  • carolyn-mazzaraverizon-net

    Member
    January 21, 2021 at 4:20 pm

    I was diagnosed with IPF in 2015 and been on Ofev since then. Just this past month I have started coughing. I cough at intervals and have brought phlegm  up just a few times. I feel like I have post nasal drip all the time. I currently take 5mg of prednisone daily and on occasions I have taken 50 mg for five days. I would like to know if anyone has had any luck with a nebulizer?  In the past prednisone made my very jumpy and I would be awake all night so I am apprehensive to take bigger doses  I don’t know what to do

  • neha

    Member
    January 29, 2021 at 4:09 pm

    Hi, if anyone is open to trying natural supplements, my research has shown that Serrapeptase (an enzyme supplement) is beneficial in thinning mucous, making it easier to expel.

  • Charlene Marshall

    Member
    January 29, 2021 at 8:12 pm

    Hi Neha,

    Thanks for sharing! Are you formally conducting research on this supplement, or more capturing your experience as a patient using it? Both beneficial and helpful for other patients, only asking out of pure curiosity. There are a few other patients who’ve also found Serrapeptase helpful for a variety of reasons – you can type in the name of the supplement in the search bar and I think lots of threads of conversation will come up 🙂

    Hope this helps and thanks for sharing!
    Char

  • neha

    Member
    February 2, 2021 at 10:48 am

    Hi Charlene, there is a lot of historic and anecdotal evidence on the benefits of protease enzymes on fibrosis and lung health. We did conduct a research study on serrapeptase and nattokinase and have seen very encouraging results (currently preparing the manuscript for publication) based on which we have initiated another larger, longer-term study to research the effects of these enzyme supplements on fibrosis, symptoms and quality of life in patients with IPF. If it works as expected, it could be a safe and effective alternative for patients.

    • neha

      Member
      February 2, 2021 at 2:35 pm

      Thank you Charlene for your suggestion of putting the name of the enzyme in the search box. I am new to this forum, so that definitely helped me navigate.

      • Charlene Marshall

        Member
        February 4, 2021 at 8:54 am

        You’re most welcome @shahnn !

    • Charlene Marshall

      Member
      February 4, 2021 at 9:39 am

      @shahnn

      Hi Neha,

      Thank you so much for writing and sharing this news with me re: the research that’s been conducted on these enzymes and fibrotic lung diseases. Do you have an anticipated publication date for the study to come out? I’d love to read it! What sites are facilitating the larger study? Thanks again for sharing, this is really interesting.

      Charlene.

  • sylvain

    Member
    February 2, 2021 at 2:16 pm

    I’ve been taking Serrapeptase for more than a year. It’s hard to tell if it helps or not, but mucus is really a daily annoyance.

  • neha

    Member
    February 2, 2021 at 2:39 pm

    We hope to have some answers to how serrapeptase and nattokinase work and their effects in patients with IPF by the end of this year.

  • jan-shabra

    Member
    February 2, 2021 at 10:55 pm

    I have tremendous coughing and mucus/phlegm after eating, 20 minutes.  I have IPF.  My pulmonologist says it is from GERD and asperates up through the esophagus.  I have to wait two months to see a gastroenterologist.  Anyone have any info?

    • Charlene Marshall

      Member
      February 4, 2021 at 8:49 am

      @cactusrun

      Hi Jan,

      Thanks for writing, though so sorry you’re dealing with the mucous/phlegm cough associated with IPF. Hopefully the gastroenterologist will have some answers, though I wish your wait wasn’t so long. I don’t have much experience with this, but lots of people have written about it on the forums for sure. Go to the forums homepage ( https://pulmonaryfibrosisnews.com/forums/ ) and then you should see a “Search Forums” bar at the top right of the screen. If you type in there what you’re looking to find, some conversations about this reflux, GERD, phlegm should come up, depending what you type in. Hope this helps!
      Char.

      Pulmonary Fibrosis News Forums

Log in to reply.