Sarcoidosis

[caz59]

Could someone tell me what this is please. I have been reading the questions and blogs and was wondering if this is something to do with IPF. Thank you.

[Hidden]

theres a member on hear with that well a few I think,so u will get advice soon,bernicex

[caz59]

Thanks Bernice x

[MarieW-F]

Hi Caz

I have sarcoidosis and its affected my lungs, small granulomas and scarring on the branches of my lungs. Its also caused fibrosis. Whether this is IPF I am not quite sure but it certainly can have a pretty devastating effect on your lungs (and other organs).

Marie

[Mocarey]

I too have sarcoidosis. The fibrosis, is scarring of the lungs as a result of sarcoid. It's different from IPF. M

[sassy59]

Pete has sarcoidosis and I agree with Mocarey, it is different from IPF. The granulomas cause scarring particularly on the lungs but it can affect other organs too. Pete has lived with this for 22 years and copd for 3 but on the whole, touch wood, he is doing pretty well. Take care. xx

[caz59]

Thanks to all for your replies and info very helpful. x

[appyalison]

I have sarcoid. It s thought to be a n autoimmune disease which can affect many organs, causing nodules which can affect the organs to a greater or lesser degree. Lungs are commonly affected (mine for instance), eyes can be, liver, kidneys, skin is quite common and I have spoken to someone who has it in her brain. Most common treatment is a steroid which is cheap. It is dangerous if it affects the heart or brain. Some people have an acute episode lasting about 3 years when it stops, leaving damage behind. Others have it as a chronic progressive disease. It can come back and become active again. Stress is thought to be a major contributor to its development. That would certainly help to explain why I have it! It might run in families - i know an Irish family where the father and daughter had it. Both extremely well years and years later. Both treated with steroids. The daughter told me she was very stressed at the time of diagnosis. Hope that helps. Alison