Forum Replies Created

  • Maya

    Member
    May 14, 2023 at 2:44 pm in reply to: ILD PF and terminal prognosis

    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!

     

     

     

     

  • Maya

    Member
    July 21, 2022 at 8:17 am in reply to: Is ipf genetic?

    I think the understanding is that there is a genetic predisposition to IPF. I think familial IPF provides evidence for this. Research indicates that both genetic predisposition and environmental factors contribute to the risk of IPF and other idiopathic interstitial pneumonias.

     

     

     

  • Maya

    Member
    July 3, 2022 at 2:09 pm in reply to: CT Scan Reads Compatible with Pulmonary Fibrosis

    Hi Joe,

    I think your pulmonologist diagnosed you with IPF because your CT scan showed a pattern of UIP (usual interstitial pneumonia) which is associated with IPF. That means that the distribution (subpleural, basal and bilateral) and features (reticulation) of scars point to UIP. I would add, as others already have, that there is absence of honeycombing so it looks more like probable UIP, rather than typical UIP and because of this his diagnosis might be a bit rushed.

    You also mention evidence of old granulomatous disease which made me think of pulmonary sarcoidosis, which can affect lungs and cause small lumps of inflammatory cells (granulomas) which usually disappear on their own. Sometimes they can progress to fibrosis.

    But as others have said, you are healthy and fit and the scarring might stay the same or progress really slowly over many years.

    Hope this helps a bit.

    I am not a medical professional but have done a lot of reading on it…..

     

     

  • Maya

    Member
    July 26, 2022 at 4:18 pm in reply to: Covid causing pulmonary fibrosis

    Hi John,

    Ground glass opacities usually represent inflammation (and a few other things) whereas true fibrosis is defined by distinct features such as honeycombing, traction bronchiectasis, reticulations. So in your case it seems you have inflammatory changes caused by Covid and they will hopefully decrease. In some patients these changes progress to fibrosis, but that’s a minority. Research shows that a lot of these changes in Covid patients are reversible.

  • Maya

    Member
    July 14, 2022 at 7:17 pm in reply to: Eperisone

    Hi Pete,

    Japanese scientists published a research article in early 2022 on the therapeutic effects of eperisone (muscle relaxant) on pulmonary fibrosis, showing that it is more effective in supressing fibroblast activity than current antifibrotic medication (pirfenidone and nintedanib). Eperisone also showed less adverse side effects. The research was done on mice.

    Link to the article in Cell Death Discovery online journal https://www.nature.com/articles/s41420-022-00851-7