Viewing 18 reply threads
  • Author
    Posts
    • #30373

      I am curious if anyone is using an inhalor to aid with beathlessness.  I have a new GP as my old one just retired and he asked me if  I had ever tried one.  No one has ever mentioned this to me before and I just assumed that inhalors had no effect on IPF. Any feedback would be appreciated

      Liz

    • #30374
      Wendy Dirks
      Participant

      Hi, Liz – My consultant told me to stop using mine. I was misdiagnosed with asthma and used them for years but they never really helped. I have hypersensitivity pneumonitis so I can’t speak for other kinds of PF.

    • #30375

      Hi Wendy,thanks for your prompt reply.  I know they are prescribed for asthma, COPD and possibly other lung diseases but for some reason I always assumed that they did nothing for IPF. I  have only been trying it for 2 days, I will give it a week or so and see how it goes.

      Thanks again, Liz

    • #30380
      Paul B
      Participant

      Hi Liz, My PCP had me using Spiriva at first. I thought it helped. Later, my pulmonologist told me that the ingredients in Spiriva have little or no effect on PF, but if I am more comfortable with it, keep using it. She later prescribed Albuterol. I have an Rx for that now but do not need it frequently. Hope this helps. Paul B – Lakeland

    • #30389
      Renee
      Participant

      Hi Liz,

      1. I am on Breo once a day but honestly can’t say if it’s helpful. I don’t have asthma so really not sure why I am on it, but doc wants me to stay with it.
    • #30390

      Hi Paul and Renee, thanks for your reply. I guess I will keep using it till I see my GP again.  If its not doing any good I can’t see the point in taking it and so far I have not seen any improvement.  Appreciate your response.

      Liz

    • #30399
      john styles
      Participant

      When I get a pft testit includes with and without albuterol, there is a small inprovement with albuterol on the test but in real time I do not feel the inprovement. If we look at the pft test it shows before and after.

    • #30401
      Pat
      Participant

      It can help if you have other associated issues eg emphysema

    • #30406
      Linda
      Participant

      Yes I have Albuterol inhaler and nebulizer inhaler and yes I find it helps bring the mucous up easier. I’m not on any oxygen and have Interstitial lung caused from Multiple connective tissue disease.

    • #30407
      Richard L Shelby
      Participant

      None of the available inhalers do anything specifically for PF disease. However, there are other reasons to use them even if one does not also have asthma or COPD.

      First, PF patients often have inflammation in the lungs and inhaled steroids can reduce the inflammation. Reducing the inflammation will help the lungs to work better and so ease breathing; PF + inflammation is worse than PF alone. (This is also why PF patients are often given prednisone — it does nothing for the fibrosis per se but deals with other issues and thereby make the PF patient more comfortable.)

      Second, even without asthma inhaled albuterol (in a nebulizer or an ’emergency inhaler’) will relax the airways allowing for easier passage of air into the lungs. A person with allergies often has a reaction in the airway which is similar to asthma, and a PF patient with allergies will generally find albuterol to be helpful by easing the breathing. People without allergies (or another similar airway constriction) will often notice easier breathing but not always.

      • #30408
        Wendy Dirks
        Participant

        Interesting! It was, however, precisely because I am already immunosuppressed that my consultant didn’t want me to use a steroid inhaler. This may not hold for every form of PF however.

      • #30418
        Libby Fisher
        Participant

        I have been on two inhalers since I was diagnosed with IPF .   I really appreciated Richard Shelby’s explanations (which my pulmonologist is terrible at).  I take Arnuity Ellipta inhaler and also Ventolin once a day.  Once in a while I have an asthmatic-like response to coughing or an irritant in my throat and need to use the Ventolin on the spot, but I don’t consider myself asthmatic. The Ventolin reaches all the way down to the tiny bronchial sacs and relaxes them.    The Arnuity Ellipta is used for COPD, ILD, IPF and probably other diseases.  I don’t like using steroids anymore than the next person, but I think Richard says it all — we’re dealing with scarring which causes stiffness in our lungs.  The inhalers help relax everything and help us breathe more deeply.

        This should probably be another topic but if anyone is interested in working on their breathing capacity and endurance, I am working with a device called PowerLung.  You can adjust the resistance on inhale and exhale and gradually work up to harder levels.  It is purchased directly from the company online.  $120.  Not cheap but way better than the small breathing devices available on Amazon or hospital/rehab ones.  It is available in a range of easy to difficult devices, from couch potatoes to endurance athletes.  I highly recommend it!

    • #30413
      PFCareGiver
      Participant

      <p style=”text-align: left;”>My mom has inhaler and nebulizer and says neither helped so she stopped using them.</p>

    • #30425
      Mark
      Participant

      Happy Veterans Day to all

      a polumnologist I had in Arizona had me using symbicort twice a day and albuterol as needed for labored breathing.

      i since moved to the St. Louis area, my new polumnologist asked about the inhalers, I said the symbicort just made nausea and tired many times, she said, stop and see what happens, now off that for the last 3 years, still use the albuterol, when very labored breathing, or just before exercising.  It seems to help me, but as my polumnologist says everyone is a little bit different, as doctors they check off the east boxes as one may say, and if that works great, but if not, then they dig deeper, start looking for the zebras when hearing hoof beats instead of the expected horses as she once said.

      so if the inhaler works, great if not, then might need to keep looking for what does.

      stay as healthy as possible

    • #30435
      jim nox
      Participant

      Have been using Ventolin (abuterol) inhaler for over 3 years, morning and night. For about 2 hours after use, I seem to cough up lots more phlegm than if not used. Seems to help clear the lungs and maybe ease the breathing. Main thing is to get that gooey stuff OUT.

      Best,

      Jimnox

      • #30496
        Richard L Shelby
        Participant

        Hi, Jim,

        You should consider switching to something else if you’re using the inhaler that often. There was a time when I used the Ventolin inhaler extensively and my pulmonologist prescribed albuterol in a nebulizer. I used it twice a day and it worked better than the Ventolin. The albuterol is in solution and so the nebulizer delivers water mist as well as the medication and that aids in getting the mucus out. It was also cheaper as my copay for a month’s supply of albuterol for the nebulizer was less that $2.

        Another alternative is to switch to a long-acting beta agonist (LABA). Albuterol is fast acting — that’s why it’s in the ’emergency inhaler’ — whereas a LABA is slower acting. However, a LABA is also long lasting. I used Brovana (a LABA) for a time and it helped a lot. While using it I almost never had to use the Ventolin inhaler. Trelegy is another often prescribed LABA.

        Talk to your physician about these alternatives as you may (or may not) get better results. They certainly helped me but then we’re all different.

        Hope this helps,

        Richard

         

    • #30442
      Rod Danner
      Participant

      I use Albuterol on occasion before exercise and before bed. It does seem to help. I also use a nebulizer with Albuterol when I seem more “choked up” than usual. It also does seem to offer some relief. They also test me with Albuterol during my PFTs and it does show some improvement post-use.

    • #30444
      Randy
      Participant

      Good afternoon everyone and hope everyone had a good Veterans day and celebrated our vets. When I first started this journey, it was about 4 years ago. My lung doc said I had emphyzema and had me on Trelogy. It sometime worked and others not. Then in Feb ,2020, I ended up in the hospital unable to breath. After 3 hospitals and a biopsy, it was found I had IPF and probably had it all along. Along with that came afib to join the cad and degenerative heart disease. Have other problems to, but that’s another story. Anyhow, my current doc put me on Flovent after finding the Trelogy didn’t work. After awhile and finding out it does help, I asked the doc just what is does. She told me that it is a inhalent steriod and works in conjunction with prednisone that tackles the lung from the other direction. For me, it’s working because I am not doing as much coughing as I used to.

      Well, that is my 2 cents for today. Here’s wishing everyone a Happy Thanksgiving with your family.

    • #30460
      Gweneeth
      Participant

      I agree with Richard.  I have IPF, Asthma and mild allergies so the inhalers are a God send for me.  I use Albuterol rescue inhaler but it still takes 25 minutes before I cough up junk.  I only use it when needed, mostly in the evening.  Hint: Don’t take it 30 minutes before church.  The cough is worse than a screaming baby.

      Everything with this disease is trial and error.  We are the most persevering people ever!  Happy Thanksgiving.

    • #30464
      Karen Martin
      Participant

      Richard, I love your explanation for the use of inhalers!  It certainly is more helpful than anything my docs have ever told me.  Always nice to get educated!  🙂

    • #30474
      Denise Stogdill
      Participant

      I have RA-ILD.  I use albuterol and it helps open up my bronchial.

    • #30477

      Hi Richard,

      Thanks for clarifying the use of inhalers for IPF. Just to be sure I am understanding correctly,  a steroid inhaler may or may not help someone with IPF and no other underlying lung problems, just depends on the individual.

      Thanks again  ,Liz

      • #30493
        Richard L Shelby
        Participant

        Hi, Liz,

        A steroid inhaler (or oral steroid) will not improve pulmonary fibrosis per se but it may (not necessarily will) make a patient feel better and breath easier. It’s as my former pulmonologist (whom I loved dearly) would say. She would enter a prescription, look at me, and say, “This won’t cure you; as you know there is nothing I can offer as a cure. But this might help your breathing and make you feel better. If it does, great. If not, then we can try something else.” I have used several steriodal medications and some helped.

        Many PF patients have inflammation in the lungs and a steroid can improve breathing in those folks. There are several commonly used inhaled steroids including budesonide/Symbicort, beclomethasone, ciclesonide, flunisolide, fluticasone, and triamcinolone. Inhaled corticosteroids are often used in a nebulizer but some are available as an inhaled dry powder. They are commonly used for asthma and COPD patients as well as PF patients. Quoting the American Academy of Allergy, Asthma, and Immunology, “These asthma medications reduce many forms of airway inflammation, which helps normalize how much mucus you produce, airway hypersensitivity, swelling and tightening of your bronchial tubes.”

        Hope this helps.

        Richard

         

Viewing 18 reply threads
  • You must be logged in to reply to this topic.

©2022 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account