• I’m in a Quandry

    Posted by HighHopes on June 7, 2024 at 10:42 am

    In September 2023, I was was found (incidentially) to have a HRCT pattern of Probable Interstitial Pneumonitis. The report mentioned: “Diffuse prominance of interstitial markings in lung periphery; mild, lower lobe brochiectatis; no honeycombing and no nodules.” Mostly consistent with IPF. All blood tests and other searches for a cause were negative/none. Several rounds of pulmonary function tests have been normal, and I have remained asymptomatic.

    My local pulmonologist and I agreed to forgo antifibrotic treatment until/unless I become symptomatic. I am already 76 years old, and quality of remaining life is most important to me. The thought of spending much of that time in a state of nausea or on the toilet is not something I’ve wanted to face any sooner than necessary.

    Recently, I went to the Mayo clinic in Jacksonville to undergo Bravo testing for silent GERD. I also arranged to have a consultation with a Mayo pulmonolgist concerning my ILD. He pointed out that even though my PFT’s have remained above normal, my FVC has declined from 92% to 84% in 17 months, and my “absolute FVC” has continuously declined by almost 300 ml since February 2023. He recommends that I have a repeat HRCT immediately. Also, I can sense that he is leaning heavily towards recommending the beginning of antifibrotic treatment. In retrospect, I didn’t realize that my FVC declines were, in fact, a serious “symptom.” That was never explained. My local pulmonologist has always been very understanding and willing to pursue all treatment options, although I’m certain he favors the “watch and wait” approach. Do any of you have any feel for these numbers in terms of an abnormally rapid decline? Even if my next HRCT doesn’t show a worsening condition, the FVC deline is still there. By the way, I’ve had a total of four PFT’s since December 2002. They were equally split between two different labs. Many thanks!

    Adele Friedman replied 1 month ago 6 Members · 6 Replies
  • 6 Replies
  • David Bennett

    June 11, 2024 at 2:39 pm

    First, not everyone gets severe side effects, those that do, they often fade with time. My sister’s only problem was a loss of appetite

    Second, waiting until you are symptomatic means you will never get any better than that. I would love to have had my disease arrested, even just slowed, before it began to limit my activity. It varies, but my disease has been stable for 5 years and the miserable side effects have become an infrequent inconvenience. I’m just coming out of one of those periods now, the first in several months. Once a day ondansetron and half a tab of Imodium twice a day for three-four days and I’m doing fine.

  • David Ota

    June 11, 2024 at 2:48 pm

    Hi HighHopes

    I like the Name…

    I am 8 years post double lung transplant. I was on OFEV as an experimental drug for years and took Esbriet and actually took both drugs on the OFEV Study. As you probably know both OFEV and Esbriet are now approved for use for IPF.

    I’ve had MANY PFT tests over the last 13 years. During my IPF days my FVC and FEV1 stayed fairly flat with a steady decline towards the end of my IPF. The number that dropped was my DLCO, a measure of how efficient my lungs were at exchanging inhaled air into my blood stream. I recall it being below 45%, and there were internet stories of DLCO at 15% and that was getting into the very bad range. By the time I was being tested for a lung transplant, I figured my DLCO would reach 15% in less than 12 months.

    Because OFEV and Esbriet slow the disease but do not stop it, I figured being on it ASAP would be my best bet. If I waited until things were really bad, then slowed the progression, I would have a shorter time with better lung functions.

    OFEV certainly gave me stomach problems, it was VERY easy to tell I was not on the placebo during the drug trial. I recall I could take a lower dose of OFEV to lessen the side effects, and once both drugs were approved, I tried Esbriet to see if the side effects were better.

    As one thought, you could try OFEV and Esbriet and see if you have side effects. You can always stop taking them.


  • Larry70

    June 12, 2024 at 2:14 pm

    I’ve been on Ofev for over two months now with no significant side effects except occasional constipation. From what I’ve read, people with significant side effects tend to be in the minority. I don’t yet have any major symptoms from my IPF and was lucky to find I had this disease early on from a CT scan done for something else. At first my pulmonologist didn’t feel I needed to start on an anti-fibrotic either as I was in such an early stage of the disease. However, a repeat CT scan showing a slight progression in fibrosis and a slight decline in my PFTs changed his mind and started me on 100mg.

    Everyone is different; some people’s progression can be very slow, others rapid. I recently talked to someone whose 74-year-old father died only 2 years after being diagnosed with IPF; he was previously healthy and was an MD (cardiologist). My aunt had IPF for 8 years before she had significant symptoms and finally passed from the disease a year after that.

    Taking an anti-fibrotic would seem to be the wisest course in most situations.

  • Sheila Curran

    June 13, 2024 at 2:57 pm

    Hi Larry,

    In 2022, at the age of 70, I was diagnosed with pulmonary fibrosis. I proactively sought testing because I had heard there might be a genetic component to IPF and my identical twin sister was diagnosed with the disease in 2017. Neither of us have symptoms. My pulmonologist suggested immediate treatment with either OFEV or Esbriet to slow the progression. I chose OFEV because my twin had a bad experience with Esbriet. It took about 3 months for my body to get used to the OFEV but now it doesn’t affect my life at all. My doc did take me down from 150 to 100 mg pills twice a day to reduce my blood pressure. I will say I felt a ton better on OFEV after I lost a lot of weight, started eating more healthily, gave up more than an occasional drink, and started a daily walking program (up to 5+ miles a day now). Oh, and I gave up work/stress cold turkey. Everyone is different, but if you can keep pulmonary fibrosis at bay, and increase things like exercise before your health actively declines, I’d encourage you to take the drugs and give it a certain amount of time before you decide the negatives just aren’t worth it. I’m glad I did, because 2 years after diagnosis I feel better than ever. Wishing you luck with whatever you decide.

  • HighHopes

    June 14, 2024 at 10:45 am

    Thanks for all of your thoughtful comments! Since I first made this post, I had another HRCT scan. My local pulmonologist did a side-by-side comparison with the scan done exactly 9 months ago and found no change. He has always suspected that I have mild, “burnt-out” fibrotic changes, and he leans in the direction of hypersensitivity pneumonitis. We will discuss this, including treatment, on June 26. My Mayo Clinic doctor just received the disc I sent, and I have not heard back from him at this point. I have no doubt that he will favor treatment.

    I hear all of you loud and clear, and I’m leaning in that’direction myself. My FVC, while still above normal, has declined more than should be expected for my age. This is probably the first indication of progression that I’ve been waiting to see. I mean, what’s really in the name or label of a disease when progression is the name of the game?

    I will leave you with this thought. I have a science (biological) background and have read literally hundreds of medical papers on pulmonary fibrosis. I have yet to find a single reference that addresses even the remote possibility of relic, non-progressive fibrotic changes. My doctor says that’s not a sexy topic. No train wrecks or road kill there. The literature would lead us to believe that ALL pulmonary fibrosis is incurable, progressive, unpredictable, and terminal. It’s like a broken record that plays over and over again, as I’m sure you all know. The absence of anything else is actually the most frightening thing of all to me……..

  • Adele Friedman

    June 18, 2024 at 2:12 pm

    FVC is a component of PFT and a relatively small change from one to the next is usually not cause for concern. It’s the trend over time. ILD or not, EVERYONE loses lung capacity as we age. Also PFTs are a snapshot of one day, and many factors can affect performance on one PFT. Good wishes.

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