This topic has 49 replies, 16 voices, and was last updated 1 month, 1 week ago by Charlene Marshall.

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    • #11515

      Good Afternoon Forum Members,

      I wanted to ask all of you about your use(s) of inhalers in the treatment of your IPF. I understand, of course, that the treatment of this disease requires much more than inhalers, however, I know that sometimes various inhalers can be used for the management of symptoms associated with many different lung diseases. I have spoken with some patients who use a combination of both “rescue” and steroid inhalers on a long-term basis to manage their symptoms. I am currently on the following inhalers to help manage my IPF symptoms: 1. Salbutamol (ventolin), Symbicort (steroid) and Zenhale (steroid). I was put on these before my diagnosis, however, since my diagnosis, my doctor shared that there would be no harm in my remaining on them to manage symptoms associated with my declining lung function.

      Are any of you on inhalers for your PF/ILD? If so, are they helpful?

      I am thinking of introducing another inhaler to help with symptom management as well, however it is not a prescription and it is more naturopathic. It is called a Himalayan Salt Pipe and there appears to be several benefits to this on the panel of the box (see photo below). Has anyone ever tried this, or heard/read about the benefits? I haven’t introduced it yet but I have it and am considering starting it this week.

      I look forward to hearing your thoughts as always!

      Warm Regards,
      Charlene.

    • #11522
       Aishia Moaishia
      Participant

      I use one inhaler Ventolin, It is occasional and just helps with the reactive airway stuff. Currently my allergies are wreaking havoc on me. I have upper respiratory crud and wheezing and coughing. I feel well, no fever, not super run down just sound horrible.   I have never heard of this salt inhaler and I am really interested in it. I will be doing some research now.

    • #11523
       Aishia Moaishia
      Participant
      • #11534

        Hey Aishia,

        Thanks so much for posting that link for those of us who are interested in learning more. I had a read through it and the benefits really seem plentiful, don’t they? I am going to start it next week so I remember to build it into all my other medication times, and I’ll let you know if I find any difference.

        There is also a place in the city where I live called the Salt Spa and they have a salt room that small bits of it are perfused through the air, the lights are dimmed, there is dry heat and it is supposed to mimic a rest and relaxation room. I did it with a friend of mine, as they gave me two free trials so we went together and I can’t say it made a huge difference for me. That said, what I did notice is that my congestion or ‘tightness’ in my chest seemed to break up a bit better and I had a more productive cough which I felt relief from. Worth a try if anything in your area has something similar, as the benefits would be very similar to the salt inhaler. If you’d like one, let me know and I can purchase one here (if you can’t find it online) and ship it for you? I’ll see if it is helpful for me first, then you can give it some thought?

        Hope you’re doing well!

        Sincerely,
        Charlene

    • #11525
       Brenda-Hal Sisk
      Participant

      I’m not on any meds or inhalers, but I’m interested in this.  Thanks for posting.  I will be anxious to learn how you are doing after you start using it.

      • #11535

        Hi Brenda,

        Thanks for joining the PF forums, we’re glad to have you!

        I will definitely let you know if I find a difference with using this inhaler. Has your doctor mentioned anything about the anti-fibrotic medications or inhalers for you? Sometimes they don’t start us on them until our PF reaches a certain point, just curious.

        Check out my reply above to Aishia about the salt room, and how I felt that helped me. If there is one in the city or town you live in, it might be worth checking out. 🙂

        I look forward to continuing to get to know you a bit more.
        Warm regards,
        Charlene

    • #11526
       gil
      Participant

      This is another reason I ought to move somewhere along the Pacific Coast……

      Form Aishia’s link:
      <h3>What is Salt Therapy?</h3>
      Humans have been using salt for therapeutic uses for thousands of years. Anyone who has spent a day at the ocean knows that salt-filled air has something special about it. Hippocrates, the father of modern medicine, used to steam salt to purify the air and the lungs.

      In Europe, the ancient Greeks used what they called Halotherapy (Halo is the word for salt in Greek), for respiratory ailments. Cave rooms full of salty air have been considered therapeutic in countries in Eastern Europe for hundreds of years.

      • #11536

        Thanks for sharing Gil!

        You know my love of the sea, so this just warrants more proof to me that living by the ocean is the place to be! I think the ocean is just a special place, it just has so much meaning and beauty in it for me, so now to hear of the benefits of living by the sea, it just makes me want to move that much more 🙂

        How is the decision about where you’re going to move coming along?

        Cheers,
        Charlene

    • #11538
       Aishia Moaishia
      Participant

      I live about an hour away from the Pacific Ocean/Oregon coast. Guess I have an excuse to take more trips to the beach! I just wish it were warmer.  Charlene, I ordered a Salt inhaler and should have it this next week. I am very interested in any homeopathic treatments that I can do in conjunction with the western medicine.  A holistic, proactive approach works best for me.  I don’t know if we have any “salt rooms” here but I am looking into it for sure.

      • #11542

        Hey Aishia,

        That is great to hear – let me know how it turns out for you once you start using it! Did you order it online? I am going to try and start taking mine faithfully on Monday, in conjunction with all my other meds, including other inhalers.

        When will it start to warm up where you are? It is “officially” spring here but I think Mother Nature is confused. It is beautifully sunny, and has been all week, but the temperature is still so deceiving. It is about 0 degrees here, so still quite chilly. I wish I lived closer so we could head to the beach together… I love the ocean and can’t wait to spend a week on the western coast of Canada in a few weeks!

        I am totally with you on a holistic, proactive approach to treating my IPF. Anything that compliments traditional therapies, I’d like to know more about so if you find anything of interest please do share it with me 🙂

        Cheers,
        Charlene

    • #11539
       gil
      Participant

      Charlene,

      I have a few more months before my lease is up but I am already searching.  Last year I went to Oregon and Northern California, I fell in love with this small town called Crescent City, near the beach and near the forests, in the winter there is quite a bit of rain so I will likely move to the Santa Maria – Santa Barbara area.

      I will try the Salt Room/Spa and the inhaler too. I’ll let you know how that one goes. As far as the salt inhalers, there are several out there, any recommendations?  I also ran across salt lamps, do those work?

       

       

       

      • #11543

        Hi Gil,

        Ah, thanks for the update – I had wondered how the searching for a new home process was going for you. It sounds like you have narrowed down the area at least, which is great 🙂 Being in between the beach and the forest just sounds lovely, are the temperatures for each season what you’re hoping for as well? I’m going to look up Crescent City, it sounds awesome!

        I’m actually not sure of any recommendation for the salt inhaler, sorry Gil. I bought the one I did (in the pictures above) as it was the only one available at the salt spa I visited. I would imagine most of them have similar properties, as long as the salt is the himalayan salt. I have heard good things about salt lamps as well, although never tried one. I wonder if anyone else has? Also, Aishia, which brand/where did you find your salt inhaler? This might give you some good options Gil. I’m going to start taking mine on Monday so I do hope to let you all know how it goes.

        What about a nebulizer? Does anyone keep one of those in your home?

        Hope everyone is going well.

        Charlene

    • #11540
       Anonymous
      Inactive

      There is evidence that ‘IPRATROPIUM BROMIDE” works well for hacking dry cough

      • #11544

        Hi there,

        Thank you for sharing that with us. I will read into this further, and if you know of any of the evidence/literature that supports this, please feel free to share it.

        Thanks again,
        Charlene

    • #11549
       Aishia Moaishia
      Participant

      Charlene,

      I ordered my salt inhaler off of Amazon. There are several different types. I just chose a moderately priced one and chose ceramic over plastic. I will begin using it today.   I have heard great things about the salt lamps as well but have never used one.  It is officially spring here in Oregon too but it is still cold and rainy. However there are promises of sunshine and 60 degree weather later this week. I am just ready for summer.

      • #11552

        Hi Aishia,

        Thanks so much for clarifying for us! I chose the ceramic one over plastic as well, and have begun to use it with you today. So far so good, although I don’t expect to notice too much of a difference especially right away. Have your first few uses of it gone alright?

        I couldn’t agree more, bring on summer weather! The sun here has been so beautiful all week, but it is sure chilly. Today we had our yard tidied up for our pup so finally it looks decent again now that the snow has all melted away. A sure sign of spring for sure! I do hope you get your sunshine and warm weather 🙂

        I am just about to send you a direct message, as I know I  still owe you one!

        Chat soon,
        Charlene

    • #11555

      I use an inhaler called BEVESPI.  I also have an inhaler machine and use Albuterol with bromide mixed together.  Also at the same time I am getting infusions to build my immune system.  For the last week or so, I am having trouble with congestion so I finally took 40mgs of prednisone today as that is about the only thing that helps me with congestion.  I have been on 15/10 dosage for the last three months and thought I was doing pretty good, but a letdown for me right now.  I was using the inhaler Asmanex along with BEVESPI, but my ankles swelled.  I’m just so confused if I’m helping IPF or hurting it.

      • #11563

        Hi Sandra,

        I am so glad to hear from you, I’ve been thinking of you and hoping that you were doing alright. Although, I am so sorry to hear that you haven’t been feeling well and have been congested. Having a cold with IPF, just makes it that much more difficult to manage doesn’t it? I do hope you start feeling better soon, and that you aren’t too hard on yourself for having to increase your dose of Prednisone again. I know it totally stinks, but hopefully it helps you a bit, and then you can begin tapering off of it again.

        Are the infusions for building your immune system in response to falling ill, or was this something that you had been doing proactively, to try your best to avoid becoming sick?

        One more question: is the inhaler machine that you have called a nebulizer? I am having this prescribed to me as well and am picking it up this coming weekend. I hope it helps me.

        Thanks again for sharing and contributing to this thread. I know others will find it helpful like I did. I do hope you are feeling better soon Sandra…hang in there!

        Charlene

    • #11559
       Joyce Douglas
      Participant

      Hello Charlene.  I have been using Inhalers for the past year. Two different ones….Atrovent (green cap) and Symbicort turbuhaler.  I had a bad cough for about 4 wks and it wouldn’t clear up. My Dr. prescribed an anti-biotic and that helped but the cough still remained.  He then ordered me to use the inhaler ‘Atrovent’ 4 times a day rather than 2.  The cough cleared up in 2 days. What a great feeling that was!

      I have also tried 3 days of CBD Oil drops from CTFO.  My son sent it to me. Sounded like a good idea to try it.  I did feel quite good after a couple of days – less stress, anxiety and unwell feeling…However, my breathing was not helping keep up with my needs and had to increase my air flow through the oxygenator from 2 to 3 and up to 4. I wondered if it was the using CBD Oil that had caused the good feelings but the bad breathing from the lungs. Stopped the oil and 2 days later am breathing much easier and so far no anxiety so hopefully that will be a leftover that I can handle.  I guess I am unable to use the CBD Oil.

       

      • #11564

        Hi Joyce,

        Thank you so much for sharing your experience, and contributing to this thread. I know others will find it helpful!

        Were you always on these inhalers since your diagnosis? I am also on Symbicort, although it is becoming difficult for me to inhale deeply enough to get the medicine into my lungs. Once I am done the puffers I have on hand (although I have 30+ repeats on fine at the pharmacy) my Doctor prescribed me a similar one that is a regular inhaler as opposed to the turbuhaler. I’ll see how I go with that one! If I can ask, how often do you use these puffers now that your cough has gone away? Which I can imagine was definitely a great feeling…. I am glad to hear this. Do you struggle with the turbuhaler, and having to take such a deep breath in?

        Hmm so interesting re the CBD oil. I’ve heard of others saying that it either ‘labours’ or slows their breathing down too much, and I wonder if it is because it does help with reducing anxiety and increasing relaxation? Not sure, but something to keep in mind in the future. I think I’ll actually make a post about this, and see if others find CBD oil helpful…. I’d be interested in learning more myself 🙂

        Thanks again Joyce, and I hope you are doing well!

        Cheers,
        Charlene

    • #11566
       Joyce Douglas
      Participant

      Hi Charlene;    I am still keeping it at 4 x a day until 2 wks are past then will taper off.  If I find the breath isn’t as easy to take with it only 3 x or back to 2 x then I’ll return to 4. I was given an ‘OptiChamber Diamond’ RESPIRONICS FROM Phillips that you fit the inhaler into one end, shake the inhaler & chamber unit, then uncap the other end and breath in slowly and try not to have it whistle.  It is a good unit to keep from gasping for the inhaler contents as we try to recover all of the contents in the chamber. I have found it to be a useful tool.  I use it at rising and at bedtime.

       

      • #11593

        Hi Joyce,

        Thanks for sharing your plan for your inhaler use as you recover. I am still using both of my inhalers 2x per day (morning and night, or as needed and can go up to 4x per day with one) plus the salt inhaler now. Are you starting to feel better? I hope you are on the mend 🙂

        I have an Aerochamber that I use for one of my inhalers, which sounds very similar to the chamber you use. I can breathe in slowly, and avoid the whistle, while the medication is administered and kept into the chamber until I take it all in. This really helps with the one inhaler, but isn’t possible with the turbuhaler (which is my Symbicort). This one is becoming difficult to use, and I think I’m going to switch to another steroid that can be administered through the chamber like my other inhaler.

        I hope you are having a lovely weekend and thanks again for sharing this with us Joyce.

        Warmly,
        Charlene

    • #11572

      Charlene, The infusions were recommended by my previous Pulmonologist because my immunoglobulin numbers were so low.  This Friday I have my sixth session.  It takes about four hours.  I feel somewhat stronger because of them and I’ve made it through the winter without getting sick.

      My little machine is referred to as a nebulizer.  It’s like the pipe you are given in the hospital where they come around about four times a day/night.  Similar to that, but not that big, long pipe.

      • #11594

        Hi Sandra,

        Thanks so much for clarifying. How are you feeling now? I hope you are on the mend 🙂

        I am really glad to hear that the infusions seem to be helping, that is good news! I don’t think I have ever heard of this, but important to keep in mind for me to maybe ask my doctor about during cold and flu season. I am pretty scared of falling ill with my IPF, and I know you can relate to this.

        I just received my nebulizer this weekend, and am just waiting for more of the medication that is added to the machine to arrive before I begin using it. I would anticipate I’ll really notice a difference/benefit with this because I get relief when I am at the hospital using it. So I am excited to be able to receive this same treatment at home. Thanks for sharing the specifics of yours, and I hope it continues to be beneficial for you.

        Take care and let us know how you’re feeling when you can Sandra.
        Warmly,
        Charlene

    • #11595

      Am very short of breath.  I think it’s because of the high pollen now.  Hopefully it will calm down for me.  I find the nebulizer very helpful.  Mine is mixed with Lbuterol and bromide. They used this in the hospital when I was in and I liked it better than just albuterol.  We have to mix the two together.  I usually have one every morning around 10 am.

      Happy Easter!

      • #11616

        Hi Sandra,

        I’ve been thinking about you since you made this post, are you feeling any better? How long will the high pollen last where you are?

        That is so good to know about the combination of meds that seem to be helpful for you, as opposed to just albuterol. Does it make you cough a lot? Usually when I get this in hospital it does help but it makes me cough, likely because it is loosening things up. I had my nebulizer delivered over the weekend and just waiting for the medications to arrive now so I can begin using it.

        I hope you’re feeling better Sandra! Take good care 🙂
        Charlene

    • #11612

      I was put on Pro Air. I can’t honestly say it works, but when i think of it i use. I am at the point i am passing out on regular basis and i always use inhaler after. and before bed. does it work? dunno for sure

      • #11618

        Hi Terry Lynn,

        Thanks so much for sharing your experience. I haven’t heard of Pro Air before, is this an inhaled steroid? I can totally relate to sometimes not thinking about using my inhaler until I need it. I recently set an alarm on my phone to go off twice a day, to help me remember to use my inhalers on a regular basis to see if it helps me. I haven’t noticed a huge difference though, I have to admit.

        I hope you continue to do as well as possible, and I’m glad you’ve joined our forums.

        Warmly,
        Charlene

    • #13435
       Michael Lamkin
      Participant

      I have been using both Spiriva  and another inhaler similar to Symbicort since being diagnosed with COPD 2.5 years ago. I’ve never used any type of emergency inhaler because I’ve never really needed it. I assume both inhalers work but all I know is my breathing has deteriorated since I bagan usage. When I was diagnosed with IPF a few months ago my doctor apparently saw no reason to discontinue their use. I just received my first months supply of Esbriet but an now hesitating because of what I recently read about the benefits of Metformin. I’m checking with my doctor to see what his thoughts are regarding Metformin and weather or not he would recommend it’s usage rather than Esbriet. Should be interesting to see what he says.

      • #13436

        Hi Michael,

        Thanks so much for contributing to this topic thread and sharing your experience with inhalers with us. I also use the Spiriva, it is the newest inhaler added to my medication mix for IPF although I heard most people use it for COPD. Is the other inhaler you use like a turbuhaler, similar to Symbicort where you have to take a deep breath in to inhale the medication as opposed to a spray? I can no longer use the Symbicort as I can’t get a deep enough breath in anymore unfortunately. Do you suspect your breathing has worsened since starting any/all inhalers, or these two specifically? I’m sorry to hear that, what a bummer!

        I think the medications, Esbriet and Metformin are both different in how they can support patients with IPF. I am on OFEV, never have tried Esbriet as the anti-fibrotic medication to manage my disease but I think it would be worth it to speak with your doctor about the benefits of Metformin. Other than some unpleasant side effects in the beginning, I know a lot of folks are finding Esbriet helpful too. Would you let us know what your doctor says re: the Metformin vs. Esbriet use? I’m very curious too!

        Sending you best wishes Michael and thanks again for writing.
        Kind regards,
        Charlene.

    • #13452
       Bill Hunt
      Participant

      Charlene:  On my first visit to my pulmonary doctor he prescribed a Ventolin HFA along with an anti static valved holding chamber.  It was prescribed so that if I ever got into a situation where I would have breathing difficulty I would have it.  Never felt the need for it yet but one never knows.  Of course it I did need it, it is in my hall closet doing me no good and not available but at least I know where it is.  A little humor here!   Bill Hunt

      • #13475

        Hi Bill,

        Thanks for sharing that – it sure made me laugh, and humour can definitely go a long way especially on our tougher days. Agreed, at least you know where the chamber is if you ever needed it, although not readily available to you. Lol! Thanks for brightening my day 🙂

        I also use an aerochamber, is this similar to what you mean? I spray the inhalers into it and it “holds” it until I can breathe it all in at a slower pace than someone who would rapidly inhale the medicine from an inhaler. During my last PFTs, the tech told me a staggering statistic… she said that only 10-15% of inhaled medications (ie. ventolin) actually make it into the lungs because so many people use inhalers incorrectly. With the aerochamber she said that increases the odds to 25% only. I was stunned. Can you believe that? Scary when the medications are considered ‘rescue’ meds….

        Hope you’re doing well and thanks again for sharing!
        Charlene.

    • #13453
       Michael Lamkin
      Participant

      Hi Charlene

      Thanks for responding to my post!  Olodaterol is the inhaler i got to replace the Symbicort which is a spray and very similar to Symbicort. You have to exhale and then spray and deeply inhale. Occasionally I have a problem inhaling the spray just as I did the Symbicort. Seems when it reaches the lungs I have a tendency to choke.  I’ve known I have COPD and moderate emphysema for 4 or 5 years and was given Spiriva then which I only used for a couple weeks but discontinued its usage because I didn’t see a difference in my breathing. Also, at that time I didn’t really feel a lot of shortness of breath. I can only say that my shortnesss of breath since I started taking these medications 2.5 years ago has gotten worse but I have no way of knowing if they actually were the cause or even were a contributing factor. The decline has been fairly gradual so it’s difficult to pinpoint anything. I think I’ll stop using for a week or so to see if I can tell the difference. I haven’t heard back from the doctor regarding the metformin but I’ll make sure I let y’all know when I do.

       

       

       

       

      • #13476

        Hi Michael,

        Thanks so much for getting in touch and sharing what the alternative to your Symbicort is. I’m really interested in learning more about the Olodaterol. It sounds like it would be an easier medication to inhale, as opposed to the Symbicort then? The Symbicort I had is a turbuhaler, so I put my mouth over the piece and inhale deeply to get all the medication in. This is where I ran into trouble, as there wasn’t an option to spray the medication from the Symbicort for me. Does this sound the same for you?

        Good to know about the Spiriva, as I just started this not too long ago and am trying to note the difference in my ability to breathe. So far I haven’t, but I also haven’t been super diligent in taking it and should more often. Sorry to hear about your increased experience(s) with shortness of breath, this is incredibly frustrating isn’t it? Sometimes I get it even when I am talking or eating, and have to stop to focus on my breathing which is quite embarrassing in the company of those who may not know I have a lung condition or how serious it is. I also get short of breath when I am laughing hysterically about something, but I don’t mind when that happens as I welcome laughter these days!

        Thanks again for letting us know about your doctors opinion on the Metformin. Although member posted that their doc was not in support of it, so I’m curious to kind of ‘collate’ the responses of different physicians…

        Take care and hope you continue to do well!
        Kind regards,
        Charlene.

    • #13460
       Steve Dragoo
      Participant

      Hi Charlene – the inhaler I mentioned in another thread has 4 essential oils and Himalayan salt.  Been using it about a week and like its’ refreshing action.  In reading the reviews by verified buyers, helped me decide. Supposedly it will last for several years if resealed properly. At $10 if it only lasted a year that would be a good bargain to me (no – I am not an Amazon Affiliate). Yes I would buy it again. Here is where I found it on Amazon:  https://www.amazon.com/gp/product/B00TWTGP4U/ref=oh_aui_detailpage_o02_s00?ie=UTF8&th=1 . Thanks! – Steve

      • #13477

        Hi Steve,

        Thanks so much for getting in touch and sharing your experience with the inhaler so far! Glad you like it – what do you mean by refreshing action? Do you find it alleviates your cough? Curious to learn more about this from you 🙂

        $10 is definitely worth it, I agree, even if it was beneficial for a few months… I’d take the relief for $10! I’ll look into this more I think, and read the reviews as well. They always help me decide about purchasing something on Amazon as well. Also curious to know which oils go into the salt mixture… is it a peppermint, eucalyptus? I can imagine those would feel cleansing and/or refreshing? I look forward to hearing more!

        Thanks,
        Charlene.

    • #13461
       Steve Dragoo
      Participant

      PS from above.  One user inhales through the mouth and exhales through the nose.  Just tried it and that is more effective.  I also asked the general community what holds the oils (are there any carrier oils – if so what)..  Thanks again for this thread. – Steve

    • #13470
       Terry Moriarty
      Participant

      Charlene, I had to laugh when I saw your post about salt inhalers and salt spas. I stumbled on to such a place in 2010 in Mesa, AZ. when I was doing a cross country drive from DC to my home in California. The “salt” place as I think of it was down the street from my favorite fiber store in downtown Mesa. I didn’t know it was a salt place when I wandered in. It just had a wonderful mystical Arizona vibe.

      I was coughing badly since driving thru a Texas dust storm and the proprietor suggested salt inhalation. Willing to try anything, I bought an inhaler and three lamps. The lamps I got because they were so pretty. Two are carved elephants, which I collect.

      I can’t say that the inhaler helped me much. The lamps have little tea lights that are supposed to release the salt therapy. They burned out real fast.

      When I moved 2.5 years ago, they all got packed up. Guess what? I unpacked them last week, having totally forgotten about them. Was just going to set the lamps up when I took a break and saw your post. What a coincidence! I’ll probably have to get new lights for them. I’m not expecting much help from them, but they are really pretty lit up. Who knows, maybe they will be beneficial this time.

      • #13478

        Hi Terry,

        Thanks for getting in touch, it is so great to hear from you as always! I suspect the salt places are a bit more prevalent in different areas of the states, especially where heat and humidity are a regular thing. I don’t know why I assume this, but I could imagine areas like California, Texas and AZ having a lot of salt spas. It was a rare find here, and a neat thing to experience but I definitely would be more interested in going back to the shops (they had beautiful jewellery) than doing the actual salt spa experience again. However, I do use my salt inhaler quite a bit, and I think it is beneficial for me, although it is hard to tell. I try to look at it like it isn’t doing me any harm so I’ll use it until I can’t any more or I am out of the salt to add to it. At that point, I don’t know whether or not I’ll buy more…

        Thanks for sharing about the salt lamps, I’ve always been interested in hearing more about them from others. Although, I wish they worked more for you then and hope they do this time! What a coincidence indeed, too funny 🙂

        Hope you’re doing well Terry and thanks again for getting in touch.
        Cheers,
        Charlene.

    • #13484
       Terry Moriarty
      Participant

      I was going to use the term “new age” to describe the salt shop, but mystic is probably more PC.  She also had beautiful jewelry and crystals.

      No humidity in Arizona, Southern California and maybe western Texas. In fact, in AZ, at outdoor restaurants, they have misters installed to try and combat the dry heat. I’ll take dry heat over humidity any day. My belief (hope?) is that desert conditions are better for the lungs. But I have absolutely no proof of that. My PFT stats were the lowest (in the 30s) for FVC when I was living in the LA area. When I moved to northern CA, they popped back into the 40s. I blame it on the Los Angeles smog. My stats were in the 40s when I was working in DC, so maybe the humid climates are better for lung conditions. That would be an interesting discussion topic.

    • #13489

      Hi Terry,

      Thanks for getting back to me so quickly! Yes the “store” section of the salt spa I went to definitely had beautiful crystals as well. I think shopping in this store was probably my favourite part of the visit 🙂

      Wow, so interesting about the states you mentioned having only dry heat vs. humidity. I would imagine this type of heat (dry) would be much more pleasant than the humidity, this makes everything sticky and hard to breathe. I’m with you and it would be my preference as well. I think this is how I’d describe Australia’s heat also, as even though the temperatures were really high, it was a different heat that didn’t bother me near as much when I was there.

      I think you’re onto something re: your PFTs and being lower in cities of high smog / densities of people where there are exhaust fumes, etc…. all the things that contribute to cities being full of smog. So interesting to hear how they went back up in northern CA after you moved. I’m also super curious to know about how coastal areas impact our lung disease as I would imagine being by the sea would be good for us as well, but don’t have proof of that either. Just some people’s responses in a previous forum post!

      Thanks again for connecting and I hope you’re keeping well.

      Kindest regards,
      Charlene.

    • #21773
       Nan
      Participant

      I came across this post and it was of interest to me. I see it is old so not sure if my post will be seen. I too was given Solbutimol (ventolin) with an aerochamber and flovent (mild steriod) when i was first dx. Ventolin for rescue. I never used the flovent for more than 2 days, perhaps i should have. The ventolin does nothing really except when i have a very tight couch with constant “tickle” it helps my cough be less tight and less painful. At least it seems to help a bit. My PFTs stated “no response from solbutimol”

      I was curious about the comments about CBD oil. I have been taking oil for several months for pain. I came across a paper on RIPF (radiation induced pulmonary Fibrosis which I have) and it states “Cannabonoid receptor -1(CB1) is know to be expressed in the lung tissue, bronchial epithelial cells, and alveolar type II cells. Activation of CB1 may exert proinflammatory or pro-oxidant effects, further leading to RIPF.” i dont know what the means but i decided to stop taking it.

      • This reply was modified 1 month, 2 weeks ago by Nan.
      • #21802

        Hi Nan,

        Thanks so much for writing about this topic – it seems to be of interest to many on the forums! Like you, I was prescribed a ventolin inhaler, and a steroid (Symbicort) at first to alleviate the breathlessness for what-they-thought was asthma. I still use the ventolin occasionally, especially when I have a cold but I don’t know if it is effective. I can no longer use the Symbicort because the turbuhaler requires a deep breath in which I can’t do anymore. I unfortunately don’t have much to share about the CBD oil but there are a few threads on the forum about this, especially using it for pain. Check them out 🙂

        Does anyone else have experience with the CBD oil they can recently share?
        Charlene.

    • #21783
       John Oman
      Participant

      After being diagnosed with IPF my Pulmonary Dr. advised me that regular, long term use of albuterol is harmful to the lung tissues. I believe he indicated it could thin/weaken them. I’m using one inhaler, the powdered steroid type (Advair) up to twice per day when I think it could helpful to relieve asthma like symptoms.

      • This reply was modified 1 month, 1 week ago by Charlene Marshall. Reason: formatting
      • #21804

        Wow, interesting information shared from your physician John, thanks for sharing! I can imagine long-term use of medications could be harmful for the lungs. The medication you’re on and still use, do you use them only when asthma-like symptoms are present, or on the regular? Hope they are effective for you. Thanks for sharing!
        Charlene.

    • #21784

      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

      • #21797
         Steve Dragoo
        Participant

        @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

      • #21805

        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.

    • #21785
       Linda 6996
      Participant

      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

    • #21807

      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.

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