• floyd-c-montgomery

    Member
    October 29, 2019 at 9:10 am

    Hi Charlene. I use both symbiocort and ventolin inhalers twice a day, and have used them for almost a year and half. I forgot to use then one evening, and really had trouble catching my breath, even though I was on 8l oxygen flow, so they make a difference for me.
    Last week I went through a 2 hour series of testing, including a nebulizer, which made no difference in lung function.
    I have a doctors appointment on the 18th of November with a specalist that deals with IPF, but I am not to optomistic about much help. I was diagnosted with IPF about 2 and a half years ago, and currently going down hill rapidly. I use 10l flow to walk, and am getting a dry cough. I would like to try laser, but cannot find anyone close that can do it.
    I am soon to be 84, so I have had a good life. The only good thing about this disease is that I am not in any pain.
    I enjoy reading this forum and wish everyone the best. It is a terrible disease!
    Floyd Montgomery

    • steve-dragoo

      Member
      October 29, 2019 at 9:41 pm

      @floydmonty

      Floyd – if you haven’t already please look at some of the other forum threads regards, class 4 laser, serrapeptase, Wei products, nattokinase, and B-complex. I have used all of these. The initial ILD diagnosis was in October 2016 – confirmed as IPF when I returned to the USA in May 2018.

      I am back in the Philippines for the past 5 months and stopped using O2 since leaving the USA in May this year. I was only using 2L at night but since laser treatments, and Wei products especially for 4 months I have significantly better mobility in this very hot humid polluted climate.

      Steve

    • Charlene Marshall

      Member
      October 30, 2019 at 2:16 pm

      Hi Floyd,

      Nice to hear from you, thanks so much for writing about this topic. It is nice to hear that someone does benefit from the inhaler use, as I know this is still widely prescribed for patients and some find benefits, whereas others don’t. It is reassuring to hear your experience about the ventolin and Symbicort benefitting you. My experience with Nebulizers haven’t been successful either in terms of making a difference for me.

      I hope your appointment in November goes well. I’ll be thinking of you! I’m glad you’re not in any pain, but man I wish none of us has to deal with this cruel disease. Wishing you well and thanks again for being part of this special community.

      Kind regards,
      Charlene.

  • linda-6996

    Member
    October 29, 2019 at 10:08 am

    I’m so glad you have done a post on inhalers because I started on one and it was a DISASTER!  Let me give you some medical background first because I would love to know if anyone else has had a similar experience.  I had a chest X-ray done at the hospital following a bout of atrial fibrillation.  It showed my lungs were perfectly clear.  Three weeks later, my cardiologist started me on Amiodarone to better control my afib.  I thought it was a wonderful drug until one year later when I started having breathing problems.  They did another chest X-ray which showed a problem so they then did a thoracic CT scan and diagnosed me with pulmonary fibrosis…presumably caused by the Amiodarone.  Six months later, I had another thoracic CT scan for comparison sake which showed the P.F. had advanced to cancer in both lungs. I would like to know if anyone else has had the same experience with Amiodarone.  Last month, I was told that my airways are narrowing and I was put on Incruse Ellipta daily (1 puff, once daily) and I immediately went into afib for several hours.  I was also given Salbutamol along with an aero chamber as a rescue inhaler.  I’m terrified to use either one of them for fear of going into afib again.  Evidently ALL of the inhalers will cause afib so I am simply putting up with all the wheezing and coughing and getting very little sleep as a result.  Neither the doctor or the pharmacist are able to suggest an inhaler that WON’T cause afib.  I’m hoping that someone knows of one that I can use.  In the meantime, I’ll try the drug free salt route.  It may be my only option.  Thank you all.

    Linda

  • Charlene Marshall

    Member
    October 30, 2019 at 5:59 pm

    Hi Linda,

    Thanks so much for writing and sharing your experience with inhalers, though sorry it sounds like it wasn’t very positive. I hope others can contribute their experience for you too.

    I’ve heard of other forum members struggling with shortness of breath and actually discovering afib being the cause as opposed to lung issues. Later however, they find out that it was a problem with the lungs causing the unusual heart rhythm, since they are so connected. If one is under compensating, oftentimes the other organ is struggling and over compensates. Did the physician think the breathing problems or PF that showed in the x-ray was linked directly to the amiodarone?

    I can’t say I have experience with the inhalers I take causing afib but it certainly increases my heart rate, which I think happens to many people. Is your doctor a lung specialist, or PCP? I can’t imagine there aren’t any inhalers that wouldn’t cause afib, but I can’t say for sure of course. Does anyone else have experience with this?

    Hang in there and please keep us posted Linda.
    Regards,
    Charlene.

  • steve-dragoo

    Member
    June 30, 2021 at 8:55 pm

    @charlene-marshall

    Hey There – I noticed this thread with interest.  Serving in the US Navy, I loved the ocean but I am too far inland in the Philippines.  I am wondering if you have had continuing success with the salt inhalers as I see many on Amazon at a decent price.

    As an alternative, I use a lot of hot water on my chest in the shower and then crank up the O2 for 100 deep breaths (if I can). Seems to help…

    Stay well – Steve

  • Charlene Marshall

    Member
    July 1, 2021 at 10:05 am

    Hi @steve-dragoo

    As always, so nice to hear from you and hope you’re doing well!

    I had bought a salt inhaler a few years back, and actually just re-came across it last weekend; funny timing on this post. I didn’t notice a significant difference when using it back then, but I was hardly symptomatic as I was newly diagnosed. Since I don’t think it will hurt and I already have it, I am going to try using it again and see if it makes much difference. I’ll keep you posted!
    Char.

    • steve-dragoo

      Member
      July 1, 2021 at 7:38 pm

      Thank you friend.  We are headed down the same path as we both approach our 5th year of IPF…

    • michael-panagiotopoulos

      Member
      September 9, 2021 at 11:22 am

      Hello Charlene, I hope you are doing well.

      I was searching the web for info on the use of salt pipes for IPF patients and found your thread! Since you’ve been using it from time to time, my question is whether there are any long-term benefits (or on the other hand, perhaps contraindications) with their use.

      I have recently acquired one [from this eshop: https://goodhealthnaturally.eu/bronchial-health/137-cisca-easy-salt-pipe-1139-5999881111088.html to help me with my cough bouts but my son thinks it might do more harm than good by further irritating the lungs and speed up the scarring process…

      Any thoughts or actual experience are welcome,

      All the best and God Bless.

       

      • Charlene Marshall

        Member
        September 12, 2021 at 5:27 am

        Hi @mikepapa

        Thanks for writing and starting the thread again about salt pipes. I would be curious to hear if anyone has found any studies or credible information about the effectiveness of these as unfortunately I really didn’t find much benefit. The only thing it might have helped – again subjective, no real measurement of proof that it did – is helped to break up some mucous so I could cough a bit better. I figured it couldn’t hurt so I tried it, but I maybe should have looked into it more as your son indicates.

        I’d be curious to hear if you find it helpful and/or have come across any credible source of information on the use of salt inhalers for IPF.

      • michael-panagiotopoulos

        Member
        September 13, 2021 at 9:51 am

        Hi Charlene, thanks for replying.

        As much as I’ve searched the web for salt pipes and IPF, so far nothing relevant has popped up. The one thing I discovered was that salt (in masks, surfaces, and even as nasal washes) can inhibit/protect from all sorts of micro-organisms, including SARS-CoV-2. So I deduced that an occasional inhalation session prior going out and mingling with other people may help keep the bugs at bay. But that’s just my own “non-scientific” reasoning.

        [https://hospitalnews.com/salt-coated-masks-and-air-filters-to-potentially-slow-the-spread-of-covid-19/]

        I intend to ask my pulmonologist next time I see him (although it seems a long shot during these covid days)

        If I have any news I’ll let you all know.

        God Bless

      • Charlene Marshall

        Member
        September 16, 2021 at 9:28 am

        Hi @mikepapa

        Thanks for sharing your findings – we learn so much from others this way! I’ll keep you updated on anything I find, and please do let us know what your pulmonologist says if you do speak with him about the salt inhaler.

        Take care,
        Char.

  • jim-nox

    Member
    September 14, 2021 at 4:03 pm

    Hi Charlene,

    Good to hear from you again. Since my diagnosis of IPF in 2018, I have used Ventolin (two puffs in morning, two before bed, and also as needed). I find it VERY helpful to loosen and expectorate a lot of bronchial junk and clear up  airways. Was also perscribed Symbicort and several other “combo” inhalers containing steriods, but have not used them regularly as they did not seem to help more than Ventolyn and are outrageously expensive (a whole ‘nuther subject about the use of carefully crafted/lobbyist empowered tools of USA big pharma to re-patent old drugs in combination so as to get exclusive marketing rights which leads IMHOP to price gouging for minimally efficacious results.)

    Hope you are doing well in our common battle against IPF. Unfortunately my IPF has progressed into PAH, a much more serious condition. Nevertheless, I am “whistling through the graveyard” and staying positive.

    Best wishes,

    Jimnox

    • steve-dragoo

      Member
      September 14, 2021 at 11:57 pm

      @jimnox

      Keep whistling Jim, keep whistling. – Steve

    • Charlene Marshall

      Member
      September 16, 2021 at 9:05 am

      Hi Jim,

      Thanks so much for your note – always great to hear from you, though so sorry to hear your IPF has progressed to PAH, that is hard. I know I and others on these forums really appreciate hearing what helps clear the lungs and throat, based on patient experiences so thanks for taking the time to share that as well.

      Keep in touch and keep up the right attitude!
      Much love,
      Char.

  • george-manolakis

    Member
    December 10, 2021 at 12:21 pm

    Charlene,

    Thank you for hosting this site. You do a great job and thousands appreciate your effort. I am a constant reader but seldom contributor. I was researching steroid inhalers and came across this thread that I read from beginning to end.

    To recap my history, I turn 87 in several days, diagnosed with IPF start of 2017, still have good PFT’s, not on oxygen so all good signs. This year I regressed significantly in terms of stamina from doing everything I wanted to sometimes barely able to walk from bedroom to living room without complete exhaustion. This morning couldn’t even brush my teeth without having to sit down. I empathise with those with far greater symptoms from IPF than I.

    Thus my interest in inhalers. I was prescribed ProAir HFR, an albuterol sulfate, which I only use to suppress severe coughing spells which occur infrequently. It does nothing for SOB, thus my interest in steroid inhalers.

    My question is to learn if these type inhalers offer relief for severe but temporary SOB and specific brands. I look forward any responses.

    Have a great day, George Manolakis

    • Charlene Marshall

      Member
      December 12, 2021 at 5:52 pm

      Hi George,

      Thanks so much for your kind words regarding the forum; I’m so glad you find it helpful and connect in to read everyone’s contributions.

      Regarding steroid inhalers, I wouldn’t have anything other than my personal experiences to share with you as I am not a healthcare professional. I was originally prescribed Symbicort but I couldn’t take it very long as I lost the ability to inhale deeply enough to get the power into my lungs. Now I use Spiriva Respimat and Zenhale. Do they work? I can’t say with certainty, as no inhaler to my knowledge has been designated to work specifically for IPF. I do think they alleviate some of my symptoms sometimes though. Does this help at all? I welcome any other contributions to answer George’s question too 🙂 Happy upcoming birthday!
      Char.

       

    • jim-nox

      Member
      December 14, 2021 at 9:14 pm

      Hi George,

      Congratulations on achieving 87 Y/O. I am 84 and was diagnosed with IPF about 7 years ago. Sailed along doing pretty good with slow moderate decline on no meds until last January 21. In the spring I noticed an increasing decline rate. Then in about May I noticed  an unmistakable rapid decline. ( all measured by regular 6min walk tests).  Was put in the hospital in July for a week of tests including right and left heart caths. Diagnosis was IPF with severe Pulmonary hypertension PAH, a heart desease caused by strain on heart caused by IPF.

      In retrospect, I believe my PAH and the sudden decline in 6MWtest were related. With your similar sudden progression and weakness, I would suspect the possibility of the onset of PAH and seek professional help ASAP. I have progresses at a fairly rapid rate and am now on 6L O2 24/7 and am essentially housebound. Just sharing my experience for whatever it may be worth. I wish you the best.

      Jim Knox

  • patrick-coghlan

    Member
    March 16, 2022 at 12:03 pm

    For years I would get a nagging cough after any kind lung infection that dragged on for months, and would always go on Symbicort until the cough went away…sometimes for 2-3 months.  I don’t even remember how long ago (10+ years) this cycle started.

    In 2019, after getting the flu and a bad cough, a chest x-ray revealed some scarring.  I was referred for a PFT with a pulmonologist who mentioned I had mild scarring which he would monitor…but never said anything about this being disease-related.  I just viewed it as lung damage from previous lung infections.

    In late 2021 I felt a cough starting without any sign of infection, and used Ventolin daily for about 2 weeks, but I think I should have went on Symbicort, as I ended up with bad lung congestion and SOB (not to mention a poor PFT result) for about 2 months.

    After another PFT in early 2022, the pulmonologist suggested I go on OFEV, and that I have NSIP but not IPF.

    In the mean time, I’ve continued with Symbicort (2x a.m. and 1x p.m.) as I feel it improves my lung function and control coughing.  My lung congestion seems to have mostly cleared up and my Jan PFT results were better, although below 70%.  I am hoping that OFEV helps stabilize my PFT numbers.

  • rumana

    Member
    November 17, 2022 at 3:13 am

    Does anyone know the effects of Manuka honey in IPF patients ? I have heard  of some patients used a good quality of Manuka honey diluting with water in microwave and using in nebuliser 3 days a week brings good result . Cough can be reduced to 90% as scar also don’t progress. I am planning to try on my mom . She is diabetic so if she inhales the honey that shouldn’t be any issue would it ?

    I searched for this in Internet but unfortunately I could not find anything . The only thing I have found was Manuka honey was used with an antibiotic with nebuliser for COPD patients which brought good results .

    • christie

      Moderator
      November 22, 2022 at 12:03 am

      Hi Rumana, I am not a doctor but I can’t say I’d advise inhaling honey (i mean, in general), but especially if your mom is diabetic. You do absorb things into your bloodstream from your lungs. Oxygen, obviously, but also larger molecules (nicotine, etc), and particulates like smoke. If sugar could be nebulized and absorbed through the lungs I imagine it could get really dangerous really fast for someone with diabetes. I’d talk about this with her doctor before trying any home remedies in the nebulizer.

  • rthorntonbresnan-net

    Member
    November 22, 2022 at 2:43 pm

    Hello Charlene and other post members. I had listed my inhalers on another post you had the other day, but will do the same here. After being diagnoised with IPF in 2020, I was put on Flovent HFA. It worked for about 2 years and then it started to not be so good. So, my lung doc added another inhaler, Ipratropium. It has been doing pretty good. As my lung capacity continues to  decrease, my caughing has increased. So, another inhaler was added last week, Budesonide INH. Haven’t been on it long enough to see how it will do. I also have 4 different heart conditions, Afib is one of them. I had another heart attach in July and got 2 more stent added. That makes 5. All this really limits what I do.

    Well, that is my contribution today. Wish everyone a Happy Thanksgiving with friends and family.

  • adele-friedman

    Member
    November 22, 2022 at 3:56 pm

    Unless it’s something like a hair clip, I try not to trust products in which their data is written in such a way as to need a good proof-reader. I also find good proof-reading is valuable in protecting oneself from online scams of all kinds: errors in spelling, grammar, syntax and punctuation do not speak well for the product advertised.  I use Symbicort and trust that if there were anything to inhaling Himalyan salt, one of my doctors would have told me so.

    • rumana

      Member
      November 22, 2022 at 4:38 pm

      Hi Adele do u have asthma as well ? The reason I am asking is that my mom used to use Symbicort before but her current pulmonologist said not to use anymore as this got asthma patients and is she continues to use it it may damage her lung more . She is currently just on Ventolin now

      • adele-friedman

        Member
        January 17, 2023 at 2:27 pm

        I have been diagnosed with asthma and have heard nothing about Symbicort being a problem for it.

      • rumana

        Member
        January 17, 2023 at 9:28 pm

        Yes right Adele as u have Ashthma then it’s safe to do so . But my mom doesn’t have Ashthma then I guess that’s why she has been told not to use symbicort

      • adele-friedman

        Member
        January 17, 2023 at 9:28 pm

        I have been diagnosed with asthma and have heard nothing about Symbicort being a problem for it. In fact, a quick Google shows it is used for asthma. Ask the doc.

        https://www.mysymbicort.com/asthma.html

         

  • satnam

    Member
    November 23, 2022 at 6:44 am

    As a 79 years old chronic IPF patient, I have suffered rather violent persistent dry cough for almost a year. Recent use of Foracort 200 inhaler (Formoterol Fumarate and Budesonide), a sort of steroids, has given significant relief.

    Satnam
    India

  • james-rollins

    Member
    November 25, 2022 at 3:06 pm
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