Has anybody had lung lesions with their PBC? Apparently there is a link.

[skippydownunder]

I had a lung biopsy and was negative for any form of cancer or sarcoidosis. They are called granulomas.

[Val02]

No but I did get a bronchiectasis which I had removed. And I developed asthma shortly before my diagnosis with PBC. Doctors have always denied any link.....but they dont really know, do they?

[skippydownunder in reply to Val02]

Sorry but what is a bronchiectasis? I haven't heard about that before.

[Val02 in reply to skippydownunder]

Its when the airways get tangled together and form a mass that gets permanently infected and can rupture. I got a permanent hacking cough, permanent infection and when i started to cough blood up they decided to remove it which involved them taking out a lobe of my right lung. There can be several reasons why someone can get a bronchiestasis but the cause of mine was classed as "unknown". I got diagnosed with PBC 3 years later and questioned a link but no one was able to give me an answer.

[Wendom]

Hi there have you had any ct scans or x rays of your lungs and if not why did the doctors decide to do a lung biopsy and what where you're symptoms x

[skippydownunder in reply to Wendom]

I had a CT of the abdomen which identified small lung lesions at the base of both lungs. I then had a chest CT and there were other lesions the biggest of which was 3.5 cms at the top of my right lung. That was the one they biopsied. These lesions also took up only a bit of the radioactive isotope I was given for the PET scan so everyone was thinking sarcoidosis. However, the blood test for that came back negative.

I didn't have any symptoms with the lungs and all my lung tests came back perfect. However, since I started taking the Ursofalk I have had a bit of pain breathing in. I take 2 Nurofen and then the pain subsides. The gastro said that was ok but I think I should speak to the lung doctor again.

[supergirl303]

Hi

I was first diagnosed PBC after having a PE in each lung and was seriously clinging to life. Im told my lungs are seriously scarred now and the hot weather oddly enough makes it worse for me. I developed all other symptoms but the lungs was first to be hit for me.

[skippydownunder in reply to supergirl303]

Thanks for your reply. Did they make links between the lung and the PBC? I didn't have any symptoms in the lungs, just the lesions discovered in the CT scans. However, since starting the Ursofalk I have had pain when breathing. Not sure if this is the lung or the liver??? Will need to ask more questions at next appointment.

[crundalite]

Hi

I was interested to read aout this as I have been having some respiratory problems in the last few years following a nasty chest infection. I coughed productively for approximately 18months before I was diagnosed with asthma at 63 years of age! At times I could barely make it up the stairs! My symptoms subsided quite quickly following thw introduction of a Symbicort inhaler. I tried coming off this for a few months as I have always had doubts about my being asthmatic. I am now back on it as a preventer and reliever as my cough and breathlessness eventually reappeared. It is 20 years since I was diagnosed ( with PBC) and AIH overlap is a recent addition. Perhaps I should ask my GP to look again?

[SNOOZY]

hi, this is the first time someone else has mentioned lung problems similar to my issues.

diagnosed with PBC 11 years ago and about 7 years ago I had major issues in my lungs. coughing non stop and breathlessness got so bad.by the time they put me in for surgery my left lung collapsed.my biopsy was of great interest to professors here in Australia . mine was a mixture of B.O.O.P ,sarcoidosis ,environmental pneumonia, and another pneumonia too. all of these things were treatable by high doses of prednisone for 20 months. I recovered...BUT it keeps coming back and now I must stay on low does prednisone to keep it from returning with vengeance. they found one other case of a woman with PBC and BOOP ...they believe its a link, another problem to deal with as an overlapping disease...Great what else do we have to deal with. I'm now 44 and have over 50%cirhosis in the liver. trying to keep upbeat can be difficult some days

[skippydownunder in reply to SNOOZY]

Just had to look up what BOOP is. My gastro said there are links between PBC and the lungs but never mentioned BOOP. They checked for sarcoidosis on the lung biopsy and with a blood test but it came back negative. So at the moment I really don't have severe symptoms with the lungs and all my tests came back in the above average range - lung tests. The lesion at the top of my right lung is 3 and a half cms (that was the one they biopsied). They don't really seem that concerned with it though. Think I need to ask more questions. By the way, are they going to put you on the transplant list with the 50% cirhosis in the liver? Or do you have to wait longer? Hope it all works out well.