Latest CT conclusion says, UIP pattern mild pulmonary fibrosis,with mild emphysema.

[Jw19]

Does this mean I have mild IPF,if so what treatment do you think the hospital

Will put me on ? Prognosis is very poor I believe for UIP disease ??

Had my spirometer tests at the docs yesterday,passed the obstruction bit

And just failed the restrictive test with a reading of 79.

Have got to wait until Jan to speak to hospital specialistlists,doing my head in

Thinking all sorts !!!

Best regards to all,john

[Salmo]

Really sorry to hear this and angry that consultants still do not give patients a clearer explanation of their results. I had exactly same meaningless "diagnosis" with lots of technical terms but absolutely no clear simple explanation of what disease I had or what it even meant long term or what next steps would be. Leaves you in a terrible state of flux where you have to come of sites like this and ask for info from other patients who are by no means experts and might give you completely wrong advice.

In slight defence of the consultants its mainly due to complexity of these type of lung diseases. They all fit under umbrella of so called ILDs (interstitial lung disease) and IPF is one of these. May be up to 100 or more other diseases in same category and some can also have UIP pattern so they probably cannot be certain at the moment and have not said IPF for that reason. It can take a lot of extra testing to confirm if it or isnt IPF. I had a year of testing to confirm I had IPF.

If it is IPF then there are 2 drugs that slow disease progression (nintedanib and pirfendione). Only 5 years ago there was nothing. If you are offered them I would go fo it. They have have some side effects in some people but these are trivial compared to the disease. I've been on both and was lucky that side effects were generally tolerable or minimal.

One final comment on prognosis for ILDs and IPF. I would not get hung up about a specific number at this time. Its a complex area and many people fixate on internet values that say 2-3 years to live. In reality the values are so variable its meaningless to come up with a number. Some ILDs have poor prognosis (2-3 years - 50% survival) but others have very good survival (more than 10 years). Even within IPF the overall life expectancy varies hugely for sub-sets of the disease and overall has been increased by anti-fibrotics. 1 recent study suggested 50% survival increased from 6 years to over 9 years.

One thing for certain - you should read up to understand what consultants say at next meeting. It pays to know what to ask in advance and helps understand their science talk. If you would like some references let me know.

[2greys in reply to Salmo]

A very good reply, I agree with reading up on it all, know your enemy, educate yourself so you will understand what your consultant says.

Medics tend to live in their medical world and forget that us mere mortals do not always understand their choice of words. They also forget that sometimes a phrase can stick in our minds focus and we do not hear the rest that is said afterwards.

A good idea is to ask if you can record the conversation on your phone so you can play it back later, as many times as you like.

[Jw19 in reply to Salmo]

Many thanks for the info,I have been doing some reading and convinced I may have sjorgens disease,I certainly have many of the symptoms ie, dry mouth and nasal passages,dry eye,really stiff joints,really bad heartburn.??

Thanks again,john

[Hidden in reply to Jw19]

There is a biomarker blood test, a couple actually which I did when my eye specialist thought I had Sjorgren and I don’t. The ultimate test is a saliva gland biopsy..I passed..in fact all inhalers and nose spray give dryness, steroids certainly don’t help your eyesight, stiff joints have so many causes and heartburn as well..

Not to say that you haven’t got Sjorgren but ask for those blood tests..

[Jw19 in reply to Hidden]

Will do !

Cheers john