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  • Posted by Scott Robertson on May 9, 2023 at 8:06 am

    Hi,

    Lots of info online about IPF and diagnosis and prognosis but not so much about those people diagnosed with ILD PF as a result of one of many hundreds of contributing factors.A lot of the articles just refer to PF as a blanket coverall for all PF which is confusing for a newly diagnosed individual.

    Even on forums some of the topics will start by mentioning IPF then further on in the conversation the postee will just mention PF and vice versa. Again pretty confusing.

    All information I have found is pointing towards PF of any kind as being progressive, albeit at different rates depending on personal circumstances.

    Yes there are drugs to slow down the progress, pulmonary rehabilitation, lifestyle changes, exercise and possible lung transplant but is it generally accepted that ILD PF would be classed as a terminal illness.If the disease is progressive, my thinking is that it must be progressive towards an end point.

    My understanding is that ILD PF is a progressive disease with no cure which as it progresses will lead to other medical complications and ultimately death.

    I just find the whole PF, IPF, ILD PF very confusing.

    Am I missing something?

    Charlene Marshall replied 12 months ago 12 Members · 13 Replies
  • 13 Replies
  • Colin O Driscoll

    Member
    May 9, 2023 at 1:24 pm

    It’s confusing because ILD and PF are blanket terms covering a whole range of different diseases, with a lot of uncertainty about outcomes. ILD is interstitial lung disease, which is anything that attacks the tissues between air sacs. PF is pulmonary fibrosis, which just means lung scarring.

    For example, IPF is progressive and eventually terminal, whereas other diseases such HP or sarcoidosis have variable outcomes. IPF stands for idiopathic PF. Idiopathic is doctor-speak for we don’t know what causes.

     

    • Scott Robertson

      Member
      May 9, 2023 at 2:42 pm

      Thanks Colin,

      it also doesn’t help that most of the symptoms can be very similar across the various illnesses and diagnosis which is why I know a proper diagnosis is so important early on.

      My understanding though is that all PF regardless of type or origin is progressive, I am just not clear where that progression always leads but the very words ‘ you’re disease is progressive’ can worry people.

      I also think that the difference between an IPF and an ILD PF diagnosis is at times very narrow as many ILD patients never know what cause their initial illness so in reality someone with ILD PF can also fall under the word idiopathic.

      I am no expert and bow to those with far greater knowledge or personal experience than myself.

      I just find the whole PF thing baffling and not all that easy to navigate.

      Scott

       

       

  • Christine McCann

    Member
    May 9, 2023 at 2:46 pm

    My understanding is the difference between PF and IPF is cause, with IPF the cause is undetermined, but it hardly matters, as far as I know all Pulmonary disease is progressive and eventually will kill you if you don’t die from complication ie, heart attack or other things. The medication available will slow the progression but by definition IPF, PF, COPD, emphysema, are all progressive. The only so called cure might be a lung transplant. I have never heard of ILD. Doctors tell people that the prognosis is a couple years from diagnosis, but that is not really the case I have been on Esbriet for close to 5 years and not doing too bad at all a little more exercise would help but it is difficult. Your pulmonologist should be much more forthcoming in explaining things to you.

  • mita vyas

    Member
    May 9, 2023 at 4:36 pm

    Hi,
    After two years of Lung Fibrosis, I am still not clear about PF, IPF, ILD PF.

    Thanks for asking.

    Mita

  • Gina Myhill-Jones

    Member
    May 9, 2023 at 7:03 pm

    Hi Scott ! This took me a while to get the hang of… so bear with me !
    Interstitial Lung Disease itself if the BIG “ what you have if you have fibrosis happening in the lungs (the “pulmonary”)”.
    Idiopathic Pulmonary Fibrosis is what’s causing my ILD, but yours could have have one of 200 more causes.
    Just to make things more confusing, different causes of the fibrosis can all have very different outcomes.
    For example… Covid has caused some fibrosis in some who got the disease, but that fibrosis may even clear up on its own !
    You need to talk to a Respirologist and get a detailed diagnosis before you assume the worst.

  • Gina Myhill-Jones

    Member
    May 9, 2023 at 7:11 pm

    Oh… and I almost forgot….
    High resolution CT images are the definitive tells for Idiopathic Pulmonary Fibrosis. It’s not just that they don’t know the cause, it has a very distinctive pattern of scarring whatever got it started.
    Please hang in there and try not to overthink this until you have all the definitive information.
    Just got back from 3 weeks of reef and jungle adventure in Belize…. IPF is something I’m coping with OK !
    Whatever your personal diagnosis, we’re all here to help, we’re rooting for ya !

  • Deleted User

    Deleted User
    May 10, 2023 at 5:56 am

    Hi. I’ve recently been diagnosed.  My mother and her two sisters died from Pulmonary fibrosis.  I had DNA testing and tested positive for the gene.  I haven’t progressed in 2.5 years, but my coughing is horrible.  My mother lived for 10 years after diagnosis, no drugs were available at that time.  I work out doing weights and cardio at least 5-6 days week for at least 40-60 minutes.  My pulmonologist says this is what’s keeping mine from progressing.  I’m not taking any medication at this time.

     

  • David Bennett

    Member
    May 12, 2023 at 9:12 am

    Think of it as a tree. ILD is at the top and is an umbrella for the other diseases.  PF is a smaller umbrella that incompasses various forms of PF, many of which are among people with other autoimmune disease.  IPF is just a specific form of PF, so the more general terms, ILD and PF don’t matter if you have a more specific diagnosis like IPF.  AND, as mentioned before, hi-res CT scan is definitive.

  • Maya

    Member
    May 14, 2023 at 2:44 pm

    Hi Scott

    I have read that about 13-40% of all non-IPF ILD will develop a progressive fibrosing phenotype. Here’s the link to the American Thoracic Society’s Progressive Fibrosing Interstitial Lung Disease Primer. Everything you need to know in terms of different types, risk factors, management etc is there. It’s the best thing I’ve found on the internet.

    https://www.thoracic.org/education-center/ild/pdf/2020_ats_pf-ild_v13_web.pdf

    My husband’s the same age as you and they found mild fibrosis incidentally when he had a CT scan for something else in autumn of 2021. He hasn’t been diagnosed with IPF as the scars aren’t at lung bases but higher up. His DLCO is a bit lower than normal. They are just keeping an eye on it for now – CT scans and lung function tests done once or twice a year. We are in the UK too.

    Good luck!

     

     

     

     

    • Carol Rush

      Member
      July 23, 2023 at 10:02 am

      is having fibrosis in the lung bases worse?

  • Vince Stravino

    Member
    May 14, 2023 at 2:44 pm

    I have had symptoms, and xray changes of IPF since 2016 but official dx made 2021 by local pulmonologist. I then saw Superstar professor at regional center who thinks ILD. I’m 87.5 years and coping decently with only nighttime 2 liters oxygen. I have only minimal restriction with stairs,hills, and exertion(no oxygen). I have a contributing cause maybe-asthma and allergies-which improves my prognosis compared to pure IPF.That means that I have been walking around with IPF or ILD for about 7 years and I am doing ok for my age. I zoom regularly with a buddy with IPF and Rheumatoid Arthritis for 9 years ! I felt a second opinion from the guru at a regional center was helpful. I also found that support groups locally and nationally, were helpful for my emotions and education about the disease. I try to live in the moment and savor each day rather than worry about the future.

    In summary, Prognosis is usually quoted from old data before earlier diagnosis and treatment, antifibrotic meds which began in 2014, and today’s improved geriatric care in general.Plus- there are a lot of promising meds in the research pipeline.Good luck!

  • Mary Walter

    Member
    May 16, 2023 at 9:15 am

    I was diagnosed in September 2022 and am progressing slowing.  I use oxygen at night (2L) and when I do anything strenuous.  I’m surprised at what is strenuous and what isn’t!  I, too, was stymied by “PF” and ILD-PF, and learned a lot from reading this thread.  I work out in Pulmonary Therapy twice a week, do an aqua exercise twice a week and do weights.  It’s so easy to just sit around.  I’m in Denver and the altitude is rough on me, even (or especially?) after four years.  I return to home to the Pacific NW or to LA CA two to four times a year and breath much better in those two places.

    It is tiring at times to live like this.

     

     

    • Carol Rush

      Member
      July 23, 2023 at 10:02 am

      I was diagnosed with Usual Interstitial Pneumonia. I haven’t seen any information on that and also IPF.  The doctor mentioned OLEV but the side effects look bad and at this point I am not coughing and my oxygen is good but energy levels down.

      • Charlene Marshall

        Member
        July 23, 2023 at 10:13 am

        Carol,

        My guess is that your doctor prescribed OFEV, not OLEV? The side effects are hard to adjust to yes, especially the GI ones but I’d ask him/her about how to manage them as OFEV is intended to slow down the progression of the fibrosis in your lungs, which is a proactive measure to manage the disease. From my experience, and what I’ve heard from others, getting on it sooner than later is better.
        Take care,
        Charlene.

  • Scott Robertson

    Member
    May 16, 2023 at 9:22 pm

    Hi Mary,

    Thankyou for sharing your story.

    Yes it is tiring at times to live like so many of us do, being ill and having symptoms that really affect your daily life can feel burdensome and exhausting, and yes even from doing everyday mundane things! .It is good though that you acknowledge this and don’t try and shove it away as something you shouldn’t be thinking or feeling.All too often we can try and always put a brave face on things when inside we can be struggling so you are definitely not alone in feeling tired, fed up or even down right peaved off at times.I would think there was something wrong with you if you weren’t lol.

    It is good to hear that you are keeping active. It is yet another of the peculiarities of this disease that we are told that exercise is vitally important when at times that can be the very last thing we want to be doing.

    I was ex military and am still currently in a job where physical robustness plays a part so I understand the benefits of exercise both from a physical viewpoint but more importantly now from the mental health side of things…..I think it’s great that you are exercising so stick with it….just be mindful and listen too what you’re body sometimes tells you, having the occasional day off can be as beneficial to our wellbeing as hitting those weights, it’s all about finding that balance.

    I can well imagine that the altitude you live at must have an effect on you complicating things further.

    This seems to be a brilliant forum where information shared can help other figure things out so don’t be shy in posting and reach out anytime you feel the need.

    From across the pond in Scotland

    kindest regards

    Scott

     

     

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