Pulmonary Fibrosis News Forums Forums Welcome Lounge Fibresolve AI – good idea to suggest to pulmonologist?

  • Bouleversee

    Member
    January 23, 2024 at 10:37 am

    I don’t see why your pulmonologist should take offence if there is still some doubt about whether you have IPF or not after a CT scan. How long ago was that? You could say that you have just read this interesting article (link) and wondered whether he was considering using this new facility to see if it shed any more light on your situation and possibly resolved any doubts as to whether you have IPF or something else. The sooner you get a definite diagnosis and treatment, the better.

    I am in the UK and was diagnosed with IPF in late 2019 and have still not been prescribed an anti-fibrotic because IPF patients (unlike other types of PF) had to wait till their disease had progressed to a certain level and although this rule was changed and from March 2023 they were supposed to qualify for treatment after diagnosis, this has not been fully implemented (lack of resources) and I am still waiting, Needless to say, my fibrosis has got worse since diagnosis and they won’t be able to put the clock back, but there we are. Definitely worth making a polite enquiry in my opinion. Good luck!

    • Larry70

      Member
      January 23, 2024 at 11:31 am

      Thanks for your good suggestion. It is interesting to hear about the issues around IPF diagnosis in the UK. I’m pretty sure my diagnosis of PF is based on my last HRCT that was done last September (for something else – so my PF finding was by accident) All the other possibilities seemed to be ruled out (CTD, toxins, etc) and the pattern on the CT scan suggests IPF (that I get from reading the radiologist’s and pulmonologist’s report – likely UIP pattern with honeycombing and traction bronchiectasis) When I get the repeat CT done in a few weeks – will be a better view of my lungs, according to my pulmonologist, as the previous one was for my heart.

      I’m not sure exactly why he doesn’t yet want to give me an official diagnosis of IPF, but after this, I should know, plus I know a lot more about this disease now, so I have more intelligent questions to ask. The main thing is that he doesn’t think I need to start on anti-fibrotics yet as the fibrosis is minimal and I am asymptomatic. He says my quality of life won’t be improved, and he doesn’t think the progression will advance that quickly – that I could have many years ahead without symptoms. While this is the best scenario, I’m unsure how well he can predict the future! I have read in a NIH paper/study that asymptomatic people who are accidentally diagnosed with early stage IPF may not benefit from anti-fibrotics. I prefer not to take them until I absolutely need to and want to follow his advice. But his advice does seem contradictory to what some others are saying – that you should take the anti-fibrotics as soon as possible after being diagnosed. Hearing that the UK has these requirements and all – makes me think there is controversy about this and wonder if cost considerations also plays a role (although I doubt my doctor is influenced by that – as I’m on Medicare)

      • Sandyman

        Member
        January 25, 2024 at 11:07 am

        Ask your Doctor if you can use his Crystal Ball.

  • donald-salzberg-md

    Member
    January 23, 2024 at 2:33 pm

    Hello. I also am surprised that a Pulmonary physician would wait until your apparent IPF gets worse. If you have IPS in May progress slowly, or it may not, but nobody can predict this. You can have an acute exacerbation along the way, which will also make it worse more quickly. The whole purpose of the anti-fibrotic medication‘s is to slow down the progression of this disease that will invariably get worse over time. And no way this is medication make you feel better and as many of you have said there’s a lot of side effects from these medication‘s. During my years as an eye care provider, once I diagnosed a patient with glaucoma, the thought of not reading that patient until they got (much) worse is so incorrect in thinking. Like most diseases as the disease advances, it is more difficult to treat and control. As for a more definitive diagnosis of IPF, if possible, a lung biopsy by a cardiothoracic surgeon is probably the most definitive way of making the diagnosis pathologically. Back in 2018 I was diagnosed as probable hypersensitivity pneumonitis, which is very different than IPF. Treatment for HP would’ve done me little good (More harm) as a diagnosis of IPF came via lung biopsy. As for this new AI test., I suspect it will be many moons before it is used as a diagnostic tool. In general physician that is asked about a test should be very welcoming and explaining the test and saying if it has merit. Most good positions, put their egos aside and do the best for their patients..

    Don

  • claire

    Member
    January 23, 2024 at 6:53 pm

    Hi Larry, your pulmonologist is just giving his opinion on your CT scan, the radiologist gives another opinion. Granted they are educated but they are still two separate interpretations. My pulmonologist told me this, because he sees me in person and does not believe what the radiologist is seeing. Scary, I know, but given that information, if your pulmonologist is anything like mine, he would welcome an AI interpretation.

    • Larry70

      Member
      January 24, 2024 at 4:50 pm

      Thanks Claire, I agree! Below I posted both my pulmonologist’s and radiologist’s findings – it is hard for me to tell from their findings on how different they are from each other. The repeat scan should shed more light I imagine. I may take it for a second opinion – where they might have a multi-disciplinary discussion (commonly done for IPF diagnosis in the Center for Excellence in ILD – which is nearby that I could go to)

  • george-poulsen

    Member
    January 24, 2024 at 4:13 pm

    Larry, I am 83 and have numerous years of slow developing Fibrosis getting worse now and at least 10 years of scarring/fibrosis identified on Xray/C-Scans. Also by choice I am on no meds as a matter of personal choice and awaiting a cure just in case….. life has been good. Some of my many scan analysis findings appear to have been a repeat of prior findings along with some add-on findings that haven’t sounded right to me. I really believe scan reviews should stand alone first and then be additionally compared against your past scans for a convincing finding. Kind of like zero based budgeting.

    I, too, finally found a doctor who gave me a much clearer understanding of the scans we are looking at. However, I am personally a very strong believer that if you don’t take advantage and take charge of every other single tidbit of info available to you then its your own life you’re taking a chance on, not your doctor’s (he still goes home at night). He thinks hard and professionally about your issue for a short period of time while tending to you,but you then have 24/7 to think about it and alternatives, and to take charge, always, right? So use that time better? I intend to have my cds reviewed by AI as I think it might detect and perceive far more accurately than the human eye. Hopefully this may provide an interpretation as to what the progression of scarring source is, when differentiated from current scans and actual autopsies and biopsies.

    I have had numerous surgical procedures in my life so I have always asked the hospital for a copy of the Cd and finding, and they are available to the patient for the asking at the hospital records desks. This is the one time that this gathering of info for AI may just be a real bright star in my life as I am convinced that my analysis should not be RA or IPF since way too many are thrown into that “dunno” basket too easily and just maybe AI will look at it a different way.

    For the record I have always asked detailed questions and even brought internet articles to the doctor and have occasionally been met with a “Dr Google” crack or a question as to whether I am a licensed professional. Those behaviors have resulted in my seeking a more open minded and compatible personality for a doctor. Again, “it’s your life” and you are entitled to search everywhere including a new doctor or the internet for whatever is available, and you should!

    Finally, please, please, post your AI experience, as to location ,
    contact number, pricing, any referrals required, medicare or not and
    nature of results as posted and it will help a lot of us who want to do
    the same thing.

    Not preaching and not a professional 🙂

    George in Texas

    • Larry70

      Member
      January 24, 2024 at 4:43 pm

      Thank you George for you post, glad to hear you’ve had numerous years and hope you get many more. To tell you the truth, I didn’t even consider getting the AI to read it on my own, great idea – IF it doesn’t cost me a fortune, sadly I’m not sure I could afford even what they might think is very reasonable – I may have to wait for it to be incorporated into ChatGPT (just kidding) seriously though, ChatGPT has been an excellent resource for me in learning way too much about PF and IPF! If I find out more about the AI for reading HRCT I will certainly post the info here.

    • Larry70

      Member
      January 26, 2024 at 6:49 pm

      I just looked into the Fibresolve AI more and on their website it says ” Supporting Skilled Clinicians:

      The results of Fibresolve are intended to be used only by clinicians qualified in the care of lung disease, specifically in caring for patients with ILD, in conjunction with the patient’s clinical history, symptoms, and other diagnostic tests, as well as the clinician’s professional judgment.” So, at least for the time being we won’t be able to do this on our own. After my upcoming repeat HRCT – I will likely seek a second opinion from another pulmonologist if a more definitive diagnosis isn’t made.

  • Larry70

    Member
    January 24, 2024 at 4:31 pm

    Thank you everyone for your thoughtful comments. Here is a link to a fairly recent NIH article/Study about IPF that addresses, in part, to my situation with early, accidental findings of PF that helped me a lot to possibly see my pulmonologist’s thinking in my situation with regard to making the diagnosis of IPF vs. his current diagnosis of ILD/PF. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10203082/

    I’m having trouble getting this forum software to accept my post for some crazy reason – maybe too long? So I’m breaking it up a little. (more to follow)

  • Larry70

    Member
    January 24, 2024 at 4:34 pm

    Here is what my pulmonologist wrote in his notes:

    # Interstitial lung disease, with some features of UIP but also somewhat atypical in the focality of the degree of honeycombing. No clear exposures or risk factors. Basic CTD workup is negative. He is asymptomatic with normal PFTs at this point. He does have a potential family history of IPF.

    Here is what the Radiologist wrote in his “other findings” note:

    “There are reticular opacities with a predilection for the lung cortices consistent with pulmonary fibrosis. There is associated traction bronchiectasis. No groundglass opacities are depicted.”

    – Interpretation: Bilateral pulmonary fibrosis

    The first point is about his reading of my HRCT (done for an elective coronary artery calcium score test). He seems to think I do have “some features” of UIP, but it is unclear where the point of origin is. Presumably, the repeat HRCT will help determine that. From what I’ve read from a number of good sources – a finding of a UIP pattern with honeycombing and traction bronchiectasis alone can be diagnostic for IPF and a biopsy or even bronchoscopy is not recommended (could potentially cause an exacerbation in a small percentage of patients)

    The NIH article says:

    Looking at the features of fibrosis, the presence of honeycombing and traction bronchiectasis may indicate advanced features of IPF, as some patients with an inconsistent or possible UIP pattern on their HRCT eventually develop a definite UIP pattern over months or years [30, 31]. Several studies have identified a poor prognosis for patients with fibrotic lung disease that shows features of honeycombing on HRCT

  • Larry70

    Member
    January 24, 2024 at 4:37 pm

    So, with all this info – what am I to think is the best course? I’d like to think that doing nothing but follow up over time with repeat HRCT and PFTs is a wise course of action – I’d rather not take the anti-fibrotics unless it clearly benefits me – and it sounds like there could be controversy here. However, I certainly don’t want to put myself at risk for faster progression! I have pretty much decided that I will seek a second opinion at the nearby Center of Excellence in ILD at the UCSD medical center – perhaps they would have a more definitive answer. Opinions welcome! Sorry about this really long post.

    This is the part of the NIH article that makes me think that waiting might be a reasonable thing to do, with regard to taking anti-fibrotics…

    For asymptomatic patients, there is a fine balance between reducing potential future symptoms and risk of deterioration, with the well-established side effect profile of anti-fibrotic medications. The ASCEND trial concluded that patients on pirfenidone had improved 6-min walk test compared with placebo, but did not establish any improvement in respiratory symptoms or quality of life [62]. Richeldi et al. reported no improvement in respiratory symptom burden or quality-of-life measures for patients using nintedanib compared with placebo [61]. There is no evidence that anti-fibrotic medications delay the onset of symptoms or improve prognosis in asymptomatic patients as no trials have been conducted to consider these outcomes. Anti-fibrotic medications do not reverse established fibrosis, they merely slow the development of new fibrotic changes, and therefore patients do not feel symptomatic benefit from treatment as the aim is to slow future decline. Therefore, it could be argued that with their established side effect profile, these medications are not warranted for asymptomatic individuals. This raises the question of whether early diagnosis of asymptomatic IPF through lung health screening programmes would actually improve treatment outcomes? As with all medical treatments, it is the prescribing clinician’s responsibility to explain the potential benefits and risks of anti-fibrotic medications to facilitate shared decision making with patients.

    • MKE

      Member
      February 15, 2024 at 3:18 pm

      My husband was asymptomatic and put on Esbriet. He’s been going down hill rapidly. He’s tired & breathless 50% of the day.

  • Bouleversee

    Member
    January 25, 2024 at 10:06 am

    I thought it was common knowledge that the anti-fibrotic treatments didn’t cure existing fibrosis and thence improve quality of life but the purpose was to slow the progression of the disease and thence extend life so it comes down to a decision as to whether the side effects, which don’t affect everyone apparently, are worth putting up with in order to extend one’s life, so it should become, and presumably is, a matter of personal choice whether to give the treatment a try or not. One can always give up the medication if the side effects are too horrendous. It is, however, important to get the diagnosis confirmed before initiating one of the treatments. What has never been explained to me is why they were offered immediately after diagnosis to patients with PF of known cause but not to IPF patients. I can’t help thinking that cost comes into it; I believe that IPF patients tend to be older than other PF patients, unless there is a genetic link, and possibly thought not worth spending a lot of money on as they are not likely to live much longer anyway.

    Another thing that intrigues me is that a lot of the medical information about IPF talks about patients suffering from persistent, hacking DRY coughs whereas mine may have been dry initially but for some years has been far from dry. I’ll spare you the details. The radiologists who have reported on my scans have not, however, expressed any doubts as to my having IPF. My own theory is that mine was caused by stress jiggering my immune system, but what do I know?

    Do keep us informed. Larry.

  • MKE

    Member
    February 15, 2024 at 3:58 pm

    My husband’s IPF was linked to a high RH factor. He went to a rheumatologist & rheumatoid arthritis was confirmed. Pulmonologist in Miami did a bronchiostomy it was negative. Up to this point he was asymptotic for IPF and RA. His calcium score was high on the heart scan.

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