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  • Posted by MSolo on May 11, 2023 at 7:59 am

    How do people get a final diagnosis of IPF? I have ILD, my brother has IPF. You cant get in a clinical trial for IPF without a diagnosis. My doctor does not recommend the biopsy since it has potential harmful side effects. (I guess my condition is not bad enough yet.) So, how do people get diagnosed? Is the biopsy the only way to diagnose this condition?

    MKE replied 2 months, 1 week ago 9 Members · 14 Replies
  • 14 Replies
  • Steve D.

    Member
    May 11, 2023 at 4:02 pm

    I would suggest getting a CT. That’s what the pulmonologist ordered. I’ve not had a biopsy and Dr suggested not doing due to potential complications. Based on CT I was prescribed Esbrit. That was back in 11/2019. Been on Esbrit since then and tolerating it really well so long as I take morning dosage with something to eat like a muffin. Hope this helps…

  • David Bennett

    Member
    May 12, 2023 at 9:12 am

    High res CT  with pulmonary function test is an established way to get a diagnosis.  I would ask about that.

  • Debbie

    Member
    May 12, 2023 at 9:11 pm

    Hi All, I’m 62 yo, 5’3″ in good physical shape walk & excerise daily. I live in NY,55 miles north of NYC. Dealt with lyme disease since 7.2011, I was Very Familiar with fatigue, being winded,body aches,brain fog,neurological issues, joint pain and immune system trashed and on and on.I had researched for doctors to treat lyme, I believe in Holistic remedies. Many lyme symptoms mimic covid, Lyme Literate medical doctors(LLMD ) have closely followed covid research. I had babisios (maleria) and other co-infections. babisios is a blood sucking the life of red blood cells,these bring O2 to our body( Inflammation in lungs). 9.2021 SOB was farmiliar along with fatigue. Checked in w/ PC doctor and ordered tests one being CT. Yielded Unusual Interstitial pneumonitis, able to see a few different pulmonologist in November. With ILD-HP and all PF are all RARE DISEASES. I was blessed to be guided to see a ILD GROUP, they are usually located in teaching hospitals to be able to study significant patients. I saw my ILD Pulmonologist January 2022 Columbia Presbyterian NYC. I’ve had blood test to check for autoimmune connection, 5 PFT (Pulmonary function test)bin the pass 18 months.I did have a lung biopsy, conclusive diagnosis is HP Hypersensitivity pneumonitis. I completed Pulmonary rehabilitation 36 visits, not on O2 or any medication. I see pulmonologist in NYC every 6 months. I have a pulse oximeter and pulmonologist informed be to check while exercising if O2 goes and continues to stay at 88, O2 stats would need O2. Pulmonary rehabilitation said to be approved for O2 the 6 minutes walk O2 stats would need to go below 88 and stay below for most of the duration of the 6 minutes. I take zinc,green tea,NAC,Serrapeptase an enzyme,Turmeric and many supplements. I pray for a cure and supplement to reverse the scaring (fibrosis). The link below was helpful for me to make since of all this.
    https://www.pulmonaryfibrosis.org/understanding-pff/about-pulmonary-fibrosis/what-is-pulmonary-fibrosis

  • MSolo

    Member
    May 13, 2023 at 8:43 am

    I had a CT scan and they said at the time it looked like IPF but gave me a diagnosis of ILD. I cant take part in any IPF Clinical Trials with the ILD diagnosis. I am ask why I have the ILD diagnosis and they are telling me because I would need a biopsy to confirm IPF. My brother has this also and never had a biopsy. I guess that I am doing too good medically. My brother has Sjogren’s disease so I hope that if we test for that I can get the diagnosis. I have read that they want to see more people in the early stages in the Clinical Trials, but I cant get the diagnosis.

  • Scott Robertson

    Member
    May 13, 2023 at 10:07 am

    Hi,

    having not long been diagnosed with PF as a complication of the ILD Hypersensitivity pneumonitis I believe that a lot of the evidence for any PF / IPF diagnosis comes from High resolution CT scan and pulmonary function breathing test results which will be obvious to any clinician reading them.

    I am likely to have scarring that looks different to those with IPF and vice versa but any change to the appearance of the lungs regardless of cause would likely be highly visible.

    I was also advised against the lung biopsy route as complications can occur

    I would perhaps ask for a second opinion on the Scan results and ask them too better explain how they have reached their conclusion to both rule in or out IPF, especially as you are stating that your brother suffers from IPF.

    If you end up with a secure diagnosis of having an ILD then concentrate on dealing with that, many ILD’s have very similar symptoms and prognosis to IPF albeit at a more leisurely protracted pace, although the end result can be the same.

    not a professional by any means and could be way of the mark but the above is my understanding, but I certainly wouldnt be hoping to have a diagnosis of IPF just so you can get on a trial.

    Believe me ILD is tough enough.

     

     

  • MSolo

    Member
    May 14, 2023 at 3:49 pm

    I am not hoping for a diagnosis of IPF, its just that they told me initially it was IPF . Given my brother has it and looking back possibly my grandfather, my biology seems to indicate this. I want to be part of a clinical trial (as something to live for).   But I like the idea of a second opinion. Thank you.

  • Scott Robertson

    Member
    May 15, 2023 at 12:15 am

    I think getting a second diagnosis would benefit you and hopefully put your mind at ease. If they are able to evidence and rule out IPF then they should be able to explain to you why they have come to that conclusion. Likewise they should be able to explain to you why they have come too the conclusion that you have ILD.

    IPF is part of the ILD family ,just with its own peculiarities and diagnosis but there are hundreds of ILD’s.

    Getting a secure diagnosis is key, unfortunately this isn’t always easy or quick but is important so one piece of advice I was given and would suggest is ask questions of any medical professional until you are satisfied and don’t be fobbed off, after all it is you’re health and life. Any decent professional should take the time to explain things in a manner best suited to you,If they can’t then find someone who can.

    I would also really suggest to anyone going through diagnosis that taking someone with you too appointments (even initially) can be beneficial as after a consultation where you can be bombarded with statistics, results  and information it is really easy too forget what you’ve been told, or get mixed up.I include myself in this!!…several times.

    As for trials, there are trials ongoing for a number of ILD’s so if this is something that is important to you then look into these once you get a secure diagnosis.

    I hope you get some clarity soon and are able to move forward

    Good luck

    Scott

     

     

  • Donald Salzberg MD

    Member
    May 16, 2023 at 3:41 pm

    Good afternoon everyone. Scott I agree that it is CRITICALLY important to differentiate IPF from other ILDs such as HP (hypersensitivity pneumonitis) et al. When I presented to my pulmonologist in 2018, I had just had an episode of shortness of breath and coughing. I had no history of lung disease or smoking, nor did I have a family history of any lung disease. I was having a variety of symptoms (prior to breathing issues) for 6-8 months (intermittent fatigue, brain fog, palpitations, body/muscle aching, etc) but nobody suspected anything from a pulmonary standpoint. Once I had the Episode of breathing issues for that short period of time, I had pulmonary function tests.  A basic chest x-ray showed pulmonary fibrosis. After I had the high definition CT scan a diagnosis of HP was made. I questioned the validity of this as a patient and physician as I did not relish high-dose steroids. I was healthy enough to have an open lung biopsy. HP and IPF differ on pathological specimens and my final diagnosis is IPF and it’s then I started OFEV. At the time of my diagnosis (age 63) my IPF was “mild” and it made sense to start the anti-fibrotics right away to allow down progression. Every disease that I ever treated is ALWAYS easier to treat earlier than later.
    In summary there was an assumption in my case I had HP based on my symptoms, presence of PF on CT/CXR and abnormal PFTs but at the end of the day it was the pathology lung specimen that definitively diagnosed me as having IPF and with that, different prognosis and treatments. Depending on what stage one is at, IPF and HP and PF associated with various autoimmune disease can appear similar on CT. I am blessed to have definitively been diagnosed 5 years ago (I pushed for the open lung biopsy)  and have had minimal progression, which I attribute to OFEV, but it’s also my genetics that may allow a very slow progression. Have an advocate for yourself—don’t just assume you have HP or IPF.

    BEST TO ALL OF YOU.

    Don Salzberg

  • Scott Robertson

    Member
    May 16, 2023 at 4:19 pm

    Hi Donald,

    Thank you for  sharing your own experience.

    Having trawled through the vast majority of this forum it is surprising to read that so many people are being advised against the lung biopsy route.

    In my case I was told very simply that because I am 53 that they didn’t want to run the risk of causing damage to my already scarred lungs that could potentially effect me for years too come.

    I wasn’t and still am not convinced by this argument!

    It seems obvious to me as a layperson that taking samples from the area that is affected is likely to return a result that in conjunction with other tests and scans can give the best positive and secure diagnosis.

    From there prognosis and any treatment plan can be made.

    I suppose we always assume that the advice we are given is accurate at the time and that the trust we put in the healthcare professionals is warranted and also reciprocated.

    Again Thank you for your input, and I will be reevaluating a few things I have been told.

    Take it easy my friend and the very best to you moving forward

    Scott

     

     

     

  • Gina Myhill-Jones

    Member
    May 17, 2023 at 8:33 am

    Hi !
    Are you in the USA?. I ask because here in Canada testing is easy to access and free. I have never waited more than 3 weeks for a high res CT, and even with Covid cases still clogging our lung centres my pulmonologist is available for calls if things get worse.
    My diagnosis took some time as we ruled out possibilities but things have really improved since.
    Self advocacy and determination help too.
    Here’s hoping you get answers soon…. Peace of mind is hard enough to come by these days without uncertainty of our health.
    We’ve all gone through the rigours of the diagnosis process and I wish you all the best while you navigate that course.

  • Larry70

    Member
    December 8, 2023 at 1:01 am

    I’m curious about getting a final diagnosis (dx) as well. A couple of months ago, I had HRCT scan done that showed pulmonary fibrosis and I then got blood work done for auto-immune tests and PFTs and then saw the pulmonologist for the first time. My PFTs were all within normal limits. I am a 70 yr old, completely asymptomatic, healthy – hike frequently and this all came as a huge shock. My aunt recently died from IPF earlier this year. The pulmonologist seemed very knowledgeable about IPF, is in a very good hospital, Scripps Green Hosp, here in San Diego. He was reluctant to give me a dx of IPF as my PFTs were normal and no crackles in my lungs, clubbed finger tips and other symptoms. My CT scan did show fibrosis that was consistent with a PF/IPF dx, I think. He said it was minimal scarring and his impression was that it wasn’t likely to progress and have many years yet before becoming symptomatic. He wants to wait to see if there are any changes in 3 months with a repeat CT scan and PFTs. If it does show progression – he said we could then discuss starting an anti-fibrotic but for now it wasn’t indicated. I’m inclined to agree with him and felt he was very knowledgeable about IPF, don’t want to take Ofev if I don’t need it but on the other hand there are other people who say you shouldn’t wait, to get a dx right away and start the meds as IPF can progress rapidly in some people. I’m thinking I’ll get a second opinion after the repeat CT scan and second run of PFTs. There is another center here in San Diego that specializes in PF/IPF – at UCSD medical center. I’m curious to hear what anyone else might have to suggest or say.

  • Larry70

    Member
    December 11, 2023 at 1:28 pm

    I wanted to add this to my previous comment, in case it helps someone else at some point. I found a very good NIH article that discusses the early diagnosis issues with IPF and PF. One quote from this article jumped out at me: “When radiological features are identified incidentally in patients without any prior suspicion of ILD, they are called interstitial lung abnormalities (ILAs) [10]. Patients with ILAs might be asymptomatic but may eventually progress and be diagnosed as IPF [10].’ I’m pretty sure this is what my pulmonologist diagnosed me with – ILA – a lot of “might and may” but that’s better than being a sure thing!

  • MKE

    Member
    February 15, 2024 at 4:05 pm

    I think anyone who has had pneumonia, serious bronchitis or Covid may show scarring in the lungs without being symptomatic for IPF. I really appreciated your posts. Perhaps today’s drs are not adjusting thinking to new sources of fibrosis with great PFT and no other symptoms?

  • MKE

    Member
    February 15, 2024 at 4:09 pm

    Thank you everyone for your experience and objectivity in this area. I’m learning so much from reading these posts.

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