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    • #28692

       

      Typically speaking, I pride myself on being a compliant IPF patient. This means I take medications as prescribed and when I am supposed to; I document any unusual side effects, I attend all appointments and ensure that I am on time for them. Therefore, it’s really hard for me when I disagree with my doctor about the effectiveness of a medication and don’t want to continue taking them based on how they make me feel.

      I’ve recently been prescribed two steroid inhalers to try and reduce some of the shortness of breath I’m experiencing, and at first I thought I was crazy but now I am certain they are making my symptoms worse. They’re causing chest tightness, muscle discomfort, a more frequent dry cough and increased shortness of breath.

      I recently read an article called, Inhaled Pirfenidone Prevented Lung Function Decline in IPF, which talks about using inhaled medications to maximize the therapy’s medicinal potential since its administered directly to the lungs. If the medication is reaching my lungs faster and in a larger dose, maybe my lungs just need time to adjust to the new inhalers I’ve been prescribed? I’m not sure but I do know that right now, they are leaving me feeling worse as opposed to better.

      Has anyone had the experience of being prescribed an inhaler that isn’t effective for you? Or actually makes you feel worse? 

      If so, how did you manage it? 

       

    • #28697
      Ben Robinson
      Participant

      Yes. If it irritates and makes you cough badly with mucus like me then it could be causing inflammation which decreases lung function.  Other than the irritation it sounds like a doctor question.

    • #28698
      Ariel
      Participant

      Hi Charlene,
      Are you taking Pirfenidone through inhalation? Or another type of steroid drug? I am interested to hear from anybody who has used the inhaled pirfenidone. I currently take Esbriet orally.

    • #28701
      Rene Hakkenberg
      Participant

      Charlene, I don’t know about inhaled Pirfenidone but wonder if by taking it directly to the lungs and bypassing the stomach, one does not have any of the common side effects, like diarrhea, lack of appetite and nausea? Question remains if inhaled Pirfenidone is effective and if so, to what extent compared to the usual pills. Obviously but unfortunately you had a negative reaction.

      • #28704
        Anonymous
        Inactive

        She is not taking inhaled Pirfenidone, it’s not even an available option to the public.

        • #28705

          @lnour, you are correct. I don’t think I was super clear in my post: I’m taking two other newly prescribed steroids via inhaler (new to me) due to worsening symptoms, but they’re not Pirfenidone. I referenced the article because it generally talked about the benefits of inhaled therapies, such as this new AP01 (inhaled Pirfenidone) but I am not taking it.

          Hope this helps clear things up and sorry for the confusion @renehakkenberg , @6yearvet and @whaldo01 .

    • #28702
      Steve Dragoo
      Participant

      Hi Charlene – I am not using inhalers but recently inquired about them back home.  I know two things: Steroids can cause several new problems and covid side effects are both strange and can last a long time.

      Keeping your immune system healthy is the best thing to do (and steroids don’t necessarily help here) and use the right supplements. Not to go into my list of supplements because I have no idea what meds anyone is on and some could interact in unpleasant ways. After taking serrapeptase for 2.5 years – it has helped mucous a lot but it is imperative to take it alone and at the right time because it may dissolve other pills faster than normal and that could be dangerous. I recently added berberine and it increased my stamina 15% – 20%.

      Please ask if you have any questions about those two.

      Stay well,

      Steve

      • #28706

        Thanks so much @steve-dragoo – always nice to hear from you and how you are doing! Thankfully a productive or mucous cough isn’t my issue, but rather the dry, barking cough that everyone fears right now because of COVID. My lungs seemed a lot better before I started taking these new inhalers – Spiriva Respimat and Zenhale – but have been trouble since. I guess there have been people who have experienced a worsening of their symptoms since starting to take some medications, which I think is my unfortunate experience this round. I hope to talk to my doctor soon about this! Doing everything I can otherwise to keep my immune system healthy 🙂

        Welcome back to the forums, friend!
        Char.

        • #28715
          Steve Dragoo
          Participant

          @charlene-marshall,

          Hello there…

          Thanks for the kind words and welcome.  And I knew I was getting in over my head when I started down the steroid trail.  I am getting a harsh cough and find a hot shower pouring on my chest clears up the cough for a day (because I am in the bedroom 20 hours a day I shower every other day – much to my wife’s chagrin – LOL). Initially, it causes more of a cough but that goes away fairly fast.

          We increased the strength of our morning calamansi juice and started adding turmeric, ginger, honey, and a little olive oil. I stopped the zinc for a while and women generally don’t need as much as men. But still take d3 with K2 and a bunch more stuff.

          Stay well and at peace,

          Steve

           

    • #28703
      Anonymous
      Inactive

      Im not sure about steroids through inhalers, but my father was put on oral Prednisone 10mg, which is NOT a high doses, for 2 – 3 weeks yet it improved all his symptoms and his DLCO also. So unless you have tried that then maybe that is better than the inhaled version. Otherwise i would try to change the doses on the inhaler, if possible and maybe take one type of steroids, from what i understand you are on two different types. Have you had a PFT since going on these inhalers?

      • #28738
        Carlo De Pellegrin
        Participant

        Hey Steve and Charlene, you both seem to very active and experienced in various matters relating to IPF. I am relatively new, being diagnosed September, 2020 and have been on Esbriet since then.

        My original local respirologist retired in November last year and met a new one ( virtually) in March this year who thought that part of my lung issue was caused from smoking for 20 years that I quit over 0ver 30+ years ago. He prescribed Spiriva which I have been taking for three months with no ill effect but I don’t think any benefit. I will continue this for six months, assuming no ill effects, until I meet the local guy again. Any comments appreciated.

        I also recently bought a couple of bottles of EGCg, because someone on this site or another, not sure where recommended it. AFTER buying it I did more research and saw a bunch of negative comments about the bad effects this stuff may have on one’s liver!!

        Any comments appreciated.

        Be well both of you, Carlo

        PS Had my second Moderna vaccine today with no real side effects except very tired this afternoon. Better now…..

        in addition

        • #28742
          Steve Dragoo
          Participant

          @carlo

          Hi Carlo,

          Welcome to the forums.

          I was diagnosed in October 2016 while in Manila and take no meds (yet) just a bunch of supplements. I can suggest you look at all the pros/cons of the medications and discuss them with your doctor.  Have you been diagnosed with anything else like COPD?  We are all so very different with additional issues and potential complications. This is why I research before I start a new supplement. I have some experience in medicine a long time ago and it casually interests me so I try to do good research.

          I took EGCg for 4 months – stopped for 1 month and like it after restarting a month ago. Just be careful of the dose you take from a reliable source.

          There are many helpful forum threads that may help you on your journey so look them over. You are in the right place…

          Stay well,

          Steve

        • #28766

          Hi @carlo,

          Thanks for your comments and kind words! I appreciate hearing a bit of your story and glad you found the forums. I am biased but believe the people on this site are amazing, and always willing to help so I have no doubt you will find some great information here.

          I also have been prescribed Spiriva (the Respimat version of the inhaler) and take it faithfully, but also not entirely sure of its effectiveness. I’m also on a couple other inhalers, and don’t know if any help – I’ve read that inhalers aren’t typically used in treating IPF in any way, just that they can alleviate the symptoms. I’m undecided if they actually do though. Hope your side effects aren’t too bad with being relatively newly diagnosed?

          I don’t have any personal experience with EGCG but there are a ton of threads about it on this site. Some say it helped and others have more negative experiences, as you say, like liver issues. I always default to talking to your doctor about this. They may say generic things like, “it won’t help” as there is no evidence based literature on its benefit, but some doctors have also said it won’t hurt, so something to consider. Chat with your physician next time you see him/her I’d say is the best bet 🙂

          Take care and so glad to hear you have received your second vaccine dose without too many side effects. Great news!
          Char.

    • #28743
      Carlo De Pellegrin
      Participant

      Hey Steve,

      Thank you for the reply. What are you taking it for? What does it do for you?

      Thanks again, Carlo

      • #28749
        Steve Dragoo
        Participant

        @carli,

        Hi Carlo,

        There is a white paper available that might help you with EGCg (link below). EGCg cuts my coughing back and helps dry out the mucous also seems to boost my energy a little, but others have said they lose weight and see some other benefits that I don’t recall but it may help with the lung scar tissue and if it does that will be very helpful.  There is a forum thread here “Clinical Trials” that has a thread on EGCg and probably has the white paper I referenced. Here is the link: https://pulmonaryfibrosisnews.com/2020/04/21/green-tea-extract-stops-anti-fibrotic-processes-ipf-small-study-finds

        Everyone is different and that is very important to recognize before you consider accepting someone’s opinion on the benefits of any supplements. It also depends on your issues and the meds you take. So please do your research here on the forums and the Internet before you decide anything for safety and wellness sake.

        Stay well,

        Steve

    • #28744
      Carlo De Pellegrin
      Participant

      Hey Steve,

      Thank you for the reply. What are you taking it for? What does it do for you?

      Thanks again, Carlo

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