IPF or idiopathic ILD?

[Oteneko]

So I was diagnosed with Interstitial Lung Disease in Spring 2019. The cause however has never been found even though there were a couple of hypotheses kicking around for a while - allergy to vape or aspiration of stomach acid. That led to a label of hypersensitivity pneumonitis or interstitial pneumonia at one point but still with the tag of idiopathic. I've asked numerous times whether my clinical team are absolutely sure I don't have idiopathic pulmonary fibrosis and keep being reassured that I don't. My question is whether any of you have ever come across this kind of situation? If ILD is idiopathic is it not therefore IPF? I'm conscious there can be serious implications if they have this wrong as certain drugs used for ILD (like mycophenolate mofetil, which I'm on) can actually do damage to people with IPF. Grateful for any thoughts or advice anyone has to share. TIA.

[Hidden]

Hello, I was first told I had ILD after scans etc and it remained stable for a while, my symptoms got worse and eventually had a VATS biopsy which confirmed IPF. I have been taking the anti fibrotic drug Nintedanib since July

[Oteneko in reply to Hidden]

Thanks for replying Mercedes15 though I'm sorry to hear your diagnosis. They've told me they don't think I'd survive a biopsy. Irony is I probably would've when firt asked but wouldn't now. Nintedanib is next drug they're going to try on me if MMF doesn't work.

[Hidden in reply to Oteneko]

I wish you all the best with the nintedanib, I have had very little side effects and take med to correct it ie(feeling sick and loose bowels)

[Suzie42]

IPF is usually diagnosed with CT chest scan. I was diagnosed with this and no biopsy needed. I'm on Pirefidone but started on Nintedanib which didnt suit me. Hope this helps

[Mavary]

Hi, I was diagnosed with interstitial scarring but was assured it’s not Pulmonary fibrosis. I always thought scarring of the Interstitium was Pulmonary fibrosis. It had me scared for a while but it hasn’t progressed at all so I’m really glad about that.

[Currygirl]

Hi there I have a similar problem I was diagnosed with pulmonary fibrosis then said it was not ILD but that I have UIP Subtype I don't really understand it.

[gilles]

wife was diagnose with ILD 6 years ago and they never found out how she got it but she has been on mycophenolate since and after being on the list for and double lung transplant for 4 years she is now of the list not cured but stable the myco did good for her anyway I hope it does the same for you that's all I know good luck

[MMaud]

I was diagnosed with IPF about 18 months ago - asymptomatic. The scarring was spotted by an eagle-eyed cardiac radiologist, reading a chest CT taken as part of some cardiac research.

I grilled the respiratory bods quite a bit on how they could label it, but allegedly certain tissue changes are very specific.

To be honest, that early appointment is a bit of a blur now. It was such a lot to take in.

I have been on Nintedanib since diagnosis, on the basis my life in currently unaffected by my IPF, so aiming to keep it that way.

[Oteneko in reply to MMaud]

Gosh, thanks so much, this is really helpful. I hope too that things stay as they are with the IPF for you. 💜