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    • #33067

      Many of us living with idiopathic pulmonary fibrosis (IPF) use inhalers to manage our lung disease. In my case, I have four prescribed inhalers, a prescription-level antihistamine, and oxygen therapy to help me breathe with this cruel lung disease. 

      My pulmonologist recently advised me to increase the use of one of my inhalers and I am now considered “maxed out” on these medicines. I started this increase about two weeks ago. 

      I don’t know if it’s possible, but I’m honestly starting to wonder if the extra doses of the inhalers I’m taking make me feel worse. I’m reluctant to speak with my pulmonologist about this because she knows what I need. Perhaps there is another reason why I’ve become even shorter of breath that just coincidentally aligns with the medication increase. Before I speak with her though, I wanted to ask our wonderful forum community: 

      Has anyone ever experienced worsening symptoms once starting a new medication (be it an inhaler or oral drug) that was intended to help you?

      If so, how did you handle addressing this with your medical team?

    • #33119
      Gary
      Participant

      Have you been prescribed any other medications to treat the IPF?

      • #33142

        Hi Gary,

        No, the only two FDA-approved drugs on the market to slow down the progression of IPF are Ofev and Esbriet. I take Ofev, and its actually not that drug I’m struggling with; its my inhaler regimen. I find when I increase one of them in particular, my symptoms tend to get worse so I was curious about others’ experience with this.
        Char.

    • #33121
      Willie X Shapiri
      Participant

      Yes, it’s possible.  I take Cell Cept and due to COVID the doctor said my PF was progressing so she upped my meds to three in the morning, same at night.  I was getting short of breath and nauseous.  My red and white blood count were going down.  I was sent to a hematologist who showed me a chart and the blood count had started going down when the doctor had increased the meds. He called her, I went back to the usual 2 in the AM and PM and have been feeling so much better.  Don’t be afraid to talk to your doctor.  Remember, she’s there to help you.

      • #33143

        Hi Willie,

        Thanks for taking the time to write and share your experience with this topic. So sorry to hear COVID wreaked so much havoc on your lungs and body, that sucks. I do have an appointment to revisit the regimen I’m now on for my inhalers, I don’t like how they make me feel so I’m hoping to go back down a step. My increase was due to post-COVID symptoms too.

        Take care,
        Char.

      • #33176
        Richard D.Gueard
        Participant

        What are the inhalers and did they work before increase?

    • #33125
      Brenda
      Participant

      Hi Charlene. I read much of what you write to possibly give me an idea where I am in this disease. I’m sorry you  have to deal with this at such a young age. I’m also not sure what to think in my case. I recently had my breathing tests as I have one every 3 months.  My last one had a conclusion by the reader of the results that I had a moderate increase in fibrosis. When I went to the doctor he said mild. I said I read the report and it said moderate. He looked at the test and said he didn’t think it was quite moderate. I didn’t know how to question that. All I ever want are the real facts. There aren’t a lot of facts on this disease so I want the best treatment for me without, even slightly, changing any results.

      • #33144

        Hi Brenda,

        Thanks for writing and contributing to this topic. I hope you’re finding the forums helpful; there is a ton of information here and some really great people. It is hard when doctors share conflicting information, I agree, and questioning him as to whether it was mild or moderate was good. We certainly have to advocate for ourselves! I think so much of the testing is subjective to the doctor’s opinions, that is what makes it hard for me too. If you can get a second opinion, or request a new physician, that is okay too… never feel guilty for doing that. The management of this disease is important to be done well and can be time-sensitive for some, so don’t be afraid to ask for additional opinions if its possible.

        Take care,
        Char.

    • #33129
      Gary
      Participant

      Charlene, has your pulmonologist prescribed either Esbriet or Ofev?  These are the two medicines that have been approved by the FDA for treating IPF.  If not, I encourage you to make an appointment with the closest Center of Excellence listed by the Pulmonary Fibrosis Foundation.

    • #33135
      Jim Couch
      Participant

      I’m luckier than most as my wife is a Hospital Doctor of Pharmacy (Pharm “D”). I don’t like drugs and my wife knows it but she has taught me the need for certain drugs. She has also taught me that no matter what the drug is intended for it works differently in each person and the results are different for each one of us. The Doctor is responsible for your curative health but your pharmacist is much more than a person behind the counter and can help you understand the medications you are taking. You have the same right to consult with your pharmacist as the doctor does (and they do). In short don’t be embarrassed to talk with your Doctor(s) and your Pharmacist(s). You know your body best – if it doesn’t feel right then question. It works for this dumb old carpenter.

      • #33145

        Great advice Jim, it certainly doesn’t sound like you’re a “dumb old carpenter” to me 😉 Glad you have your wife there as a strong advocate for you too!
        Take care, and thanks for taking the time to write,
        Char.

    • #33138
      Rob1ert Henderson
      Participant

      I will soon find out.  Have been on ofev 6 months.  Initially no issues.  Over last 2 months have grown increasingly tired, to the point I sleep 10+ hours/day. Recently doing 20 minutes on treadmill & 50 minutes of water jogging 4 times / week.  No more, can barely walk 1/2 block.  Also can’t eat, lost 25 lbs in 6 weeks.  Waking hours spent in recliner staring at tv.   Recent spirometer ?? (Breathing) test showed improvement.  Pulmonologist taking me off ofev for 4weeks.  Others having similar experiences?

      bob Henderson

    • #33136
      Steve D.
      Participant

      Hi – I absolutely noticed a decline in my breathing capacity using Albuterol PRN. Needless to say I have completely ceased using anything prescribed except Esbrit. I do take OTC drugs based on “potential” finding such as Zinc, CoQ10, etc… At my last spitrometry the disease has not progressed in the last 8 months. Not sure why except I’m being blessed…

      • #33146

        Hi Steve,

        Interesting post – thanks for sharing your experience! Its albuterol that I’m struggling with actually, along with another inhaler. When the prescribed inhaler dose went up, my symptoms seems to get worse. Goodluck and I hope your symptoms and test results continue to stay stable; sometimes that the best we can ask for.

        Take care,
        Char.

    • #33184
      Christine McCann
      Participant

      I can not use inhalers they make me feel worse so I don’t use them. The one with Albuterol in perticular bother me the most. One of the pulmonlogist I had once said to use it every day but I go for what mwkes me feel better, and when I have a PFT test I tell them to use the one without the Albuterol.

    • #33185
      Charles
      Participant

      There was an article from Cedar Sinai hospital saying that using ZINC was very good. So i have started it at 25 mg per day and i seem to be doing a little worse. Anyone aware of this?
      Chuck

      • #33197

        Hi Charles,

        There’s been a lot of conversation about Zinc on these forums. If you use the search feature by going to the top right-hand side of the page and start typing in Zinc slowly, all the conversation threads should come up. I don’t have any personal experience to share with you, but I know a lot of people have started or continued taking Zinc since this article was released.
        Take care,
        Char.

    • #33186
      Susan o
      Participant

      I am on Ofev. My Pulmongist told me an inhaler will not help. I have a terrible cough all day with lots of phlegm. I Take an awful
      Lot of cough drops during the day to help with the cough.

      • #33196

        Hi Susan,

        Thanks for sharing. Sorry to hear you deal with a terrible cough with lots of phlegm, that sounds terrible. I think the prescription of inhalers likely depends on what type of cough you have with IPF, dry or wet etc. Hopefully your doctors can find something else to help manage the cough!
        Take care,
        Charlene.

    • #33193
      Michael
      Participant

      I too have found that the prescribed inhaler that contains albuterol makes me feel worse (Combivent Respimat).  I also use Symbicort which contains a steroid to reduce inflammation, that does not seem to aggravate my airways like the one containing albuterol.  Thanks for this post, Charlene – it’s helped me validate the situation. I go in for my quarterly testing next week and will report this to my pulmonologist.

      • #33195

        Thanks for sharing your experience with us Michael, and sorry you can relate to medications making you feel worse. I am on the Respimat as well, but can no longer take Symbicort as its too hard for me to take a turbuhaler. I hope the discussion with your pulmonologist about this goes well.
        Take care,
        Char.

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