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    • #19290

      As the heat and humidity of summer begin to descend upon many of the Canadian provinces (finally!), so does dryness in the air. Historically, I always thought nosebleeds were due to dry air and were simply more common the hot summer months. After a recent post by one of our members, I’ve begun pondering if there is a connection between my increased nosebleeds and the anti-fibrotic medication that I take to manage my idiopathic pulmonary fibrosis (IPF).

       

      Do any of you also experience an increase in nosebleeds since being diagnosed with IPF/PF?

      Have you been able to identify if the increase started after you began taking Ofev or Esbriet?

       

      I’d be curious to hear from you if this is something you’re experiencing and how you best manage it. I wonder if this is somehow an unexpected or explained side effect of one of the two anti-fibrotic medications approved to help slow the progression of IPF. Despite having these more often, I am not worried about them as they tend to stop/clot without any issue, but I can’t help wonder why I am experiencing them more frequently.

      Can you relate?

    • #19297
      Suzanne R Brennan
      Participant

      I have taken both of the anti-fibrotics and have had a couple of nose bleeds but am also on a blood thinner since a pulmonary embolism in August last year.  None of the medications seem to have caused the nosebleeds. I live in Denver, which is very dry and I attribute the ones I have had to that.

    • #19309

      Hi Suzanne,

      Thanks so much for your reply to this topic thread – I’m definitely curious to hear from others about their experience with this! Most likely, my nosebleeds are also due to the dryness and change in weather that is in the air over the last few weeks. It just seems odd their frequency, and another wonderful member of the forums mentioned that this could be happening more often since starting Ofev, so of course I pondered about whether or not this could be connected. I’m glad you attribute it to the weather, and not the medications, although sorry you experience them at all. Which anti-fibrotic medication did you end up sticking with, Ofev or Esbriet?

      Regards,
      Charlene.

    • #19397
      Duncan Fowler
      Participant

      Hi Charlene,

      Yes I do take OFEV and do suffer from nosebleeds but I don’t believe it is the drug.

      I am also on Oxygen for about 16 hours/day and that includes while I am sleeping. I have been told that nose bleeds and Oxygen users are quite common.  The key to prevention is humidification for me.

      If my humidifier bottle goes dry on my Oxygen generator at night, I can almost guarantee a nose bleed.

      Other things I do is use saline nose sprays and there is also a saline nose gel available.

      But what do you do  when you get a nose bleed?  I have found that using OTC “Afrin” does have the ability to quickly shrink nasal blood vessels and a couple squirts in each nostril really helps with nosebleeds.  This was recommended to me by an ENT Doc

    • #19403

      Hi Duncan,

      Thanks so much for getting back to me regarding this topic, I appreciate your insights!

      That makes sense re: the nosebleeds being connected to prolonged oxygen use as opposed to the Ofev medication. I am increasing the amount I am on it as well, so that could be the correlation I wasn’t seeing. I used to use vasaline to lubricate my dry nostrils until I learnt it is flammable. Did you know that? The saline spray is a much better idea!

      Oh I will look into your suggestion from the ENT as well, that is very helpful. Do you purchase that at the pharmacy or online? Typically I just sit and wait for it to clot, but sometimes happens quickly, other times not. Thanks again for getting in touch.

      Charlene.

    • #19404

      Hi Duncan,

      Thanks so much for getting back to me regarding this topic, I appreciate your insights!

      That makes sense re: the nosebleeds being connected to prolonged oxygen use as opposed to the Ofev medication. I am increasing the amount I am on it as well, so that could be the correlation I wasn’t seeing. I used to use vasaline to lubricate my dry nostrils until I learnt it is flammable. Did you know that? The saline spray is a much better idea!

      Oh I will look into your suggestion from the ENT as well, that is very helpful. Do you purchase that at the pharmacy or online? Typically I just sit and wait for it to clot, but sometimes happens quickly, other times not. Thanks again for getting in touch.

      Charlene.

    • #19408
      Duncan Fowler
      Participant

      It does make sense that Vaseline is flammable.  It is a petroleum product.

      Afrin, here in the States is an over the counter (OTC) nose decongestant.

      Here we find it in Grocery stores, Drug Stores and on-line such as Amazon. 🙂

      It is supposed to keep you unplugged for 12 hours.

      It seems to work fast for me.  But, you can always pinch your nostrils closed and put pressure on the bleed to help it clot faster.  There are times when I first get up and blow my nose and it is slightly bloody.  A couple of squirts fixes it!

      Cheers

      Dunc

       

      • This reply was modified 2 years, 6 months ago by Duncan Fowler.
    • #19440
      Jack Blum
      Participant

      Wow! I have been waiting for this problem to be discussed. My history: I broke my nose at a young age playing football. Bad surgeon, and have a deviated septum, and partial blockage in right nostril(and a crooked nose).

      Was told would have to reBREAK my nose to correct. Got enough issues without another surgery.

      5 years ago I was diagnosed with IPF and went on Esbriet immediately. I have also been on O2 for 4 years(2 at rest and 4 at exercise). Never had nose bleed problems, other than some red in right nostril when blow my nose.

      This January, I started waking up with terrible nose bleeds. I use a humidifier on my concentrator, spray saline twice a day, and was using AYR nasal gel. I started having bad Nasal Crusting (Boogers) in my right nostril. When they finally would blow out, I would have a bad nose bleed. That is because it formed into a scab. When scab came off too early I would get another nose bleed.

      After researching I have concluded the following:

      I am a hairy guy and have a lot of fine nose hairs, keep them trimmed.

      With IPF, I develop a lot of mucous that I cough up. Mucous causes boogers. Filtering.

      I have sinus flareups that cause nasal drip. More mucous.

      Saline spray works best, I use AYR.

      AYR gel helps the pain, but causes scabbing to be worse if used 3 or more times a day.

      I believe my problem, since mainly in my right nostril, is due to blockage and excessive build up of O2 in right nostril.

      If I have it repaired, will have to breath O2 through mouth till nose fixed.

      Bottom Line: Been on Esbriet for 5 years, no nose bleeds til this year. Not the drug.

      Also, I live in Arizona! Dry climate.

      I know I am long winded when typing, but there is not a lot of information out there on this very bad issue.

      One more tip: Afrin nasal spray soaked on tissue and packed in nostril, will stop the bleeding sooner.

      • #19604

        Hi Jack,

        Thanks so much for getting back to me and sharing your experience with this pesky topic! It is hard to believe the resemblance some of us have with the effects of this disease. While I wish none of us were dealing with it, it sure makes me feel less alone…

        Sorry to hear you’re dealing with the nosebleeds too, and of your history of breaking your nose at a young age. I didn’t know about the mucous causing issues in the nose, do you suspect there is any way to deal with this? I guess it would come down to trying to eliminate the mucous, which I know can be nearly impossible with this disease. Glad to hear you’ve concluded it isn’t one of the two anti-fibrotics, this makes me feel a bit better. Your sharing will most definitely help me – especially the AYR gel and Afrin nasal spray – and I am confident it will be helpful to others as well. Thanks for taking the time to be so thorough!

        Regards,
        Charlene.

    • #19500
      Jay Turbes-s
      Participant

      Like Suzanne, Milady here in Denver would have occasional nosebleeds, with or now without the Esbriet. Besides being low humidity here (usually…it’s been pretty soggy of late) the O2 is quite drying. And adding the humidifier bottle to the concentrator just makes things messy and clogs the line with condensation. So she just uses saline nasal spray and muddles on.

    • #19513

      Thanks for sharing Jay! I suspect a saline nasal spray may be the way to go for me too, something to consider. Does she use this regularly or more so after a nosebleed to prevent it from happening again? Nice to hear from you and hope your wife is doing as well as possible.
      Regards,
      Charlene.

      • #19519
        Duncan Fowler
        Participant

        I have had the issue of moisture condensing in the line going from the concentrator to the nose piece.

        I have found that always filling the humidifier bottle NO MORE than 1/2 of distilled water seems to work for me!

        Good Luck

        Dunc

        • #19638
          Jay Turbes-s
          Participant

          Charlene,

          Milady’s nosebleeds aren’t that frequent, so she uses the saline spray mostly to keep congestion in check and to relieve any dryness from the O2. She’s also tried applying peanut oil (?) that she read was good in one of her metaphysical books…mine is not to reason why, just provide support 🙂

          J.

        • #19639
          Jay Turbes-s
          Participant

          Dunc,

          Yes, we did the “half full” thing with the distilled water too. I think because Milady is upstairs and the concentrator is down in the family room with mucho tubing in between, it still results in being messy. Coping with the dryness and preventing scabs with veggie oils seems to be more “do-able” than hassling with that bottle.

          Cheers!

          J. in CO

        • #19676

          Thanks for getting back to me Jay! Glad the nosebleeds aren’t that frequent, and that she is finding ways to manage and hopefully proactively prevent them too 🙂 Peanut oil, huh? I’ll keep that in mind! I’m learning so many effective strategies to deal with this from the forums, which I am so grateful. Suppose that is the point of them, but I couldn’t learn as much without you all. Take care!
          Charlene.

    • #19619
      Peggy McBride
      Participant

      To help the problem of scabs in the nasal canal, I find a little dab of vitamin E oil works wonders. I actually use it every morning as a preventative measure. I noticed that when I forget after a couple of days the problem arises again.

    • #19632

      Hi Peggy,

      Thanks so much for sharing this – I can’t believe I forgot/didn’t think of vitamin E oil! I am convinced that works wonders for many different things, and suspect it would work well, as you say, for a preventative measure. Thanks again for sharing, and really glad to hear this solution works for you 🙂

      Regards,
      Charlene.

    • #19637
      Jack Blum
      Participant

      Hi Charlene,

      Thanks for the comments. As far as mucous control, I have found that a teaspoon of apple cider vinegar in a glass of water will really help in coughing up phlegm. Also Mucinex or a generic will help on some days. Depends on the person, but once you are used to the vinegar, it does seem to help me.

       

      Jack

    • #19677

      So good to know Jack, thank you so much for sharing! I also like that solution, as it is a bit more natural than some of the medications (even over the counter) or solutions. Thanks for sharing, I’ll add this to my ‘solutions’ list which I’ve generated from this thread and now have tons of ideas. So thankful for all the support!

      Cheers,
      Charlene.

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