Sarcoidosis?

Hi all!

I have been wondering for a while about my having Sarcoidosis in my liver as well as PBC per diagnosis. Does anyone here have Sarcoidosis as well? Does anyone know what it is? How it effects the liver long term? Or if I should be on any treatment for it? Sure would appreciate any sharing. I think it would lessen my concern to hear anyone else's story who has it.

Thanks!

Kathy in Colorado

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Hi Kathy, I have Sarcoidosis, as well as PBC. I was diagnosed with Sarcoidosis in 2009 before my PBC diagnosis in 2013. I found out at the time of PBC diagnosis my CT scan in 2009 showed nodules on my liver. I have never been told the Sarcoidosis effected my liver. My Hepatologist told me after my Fibroscan that he suspected I had regenerative hyperplasia as I was at Cirrhosis stage at diagnosis. I was never given any treatment for Sarcoidosis and my Respirologist says my lungs have improved quite a bit. I hope this answers a few of your questions. I hope you can get some answers to your questions from your doctor.

Janet (Surrey, BC)

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Hi Janet,

Sounds like you have Sarcoidosis in the lungs and the liver? So far the only place they found it in me was my liver. They went looking for it in my lungs but they were clean. It is helpful to know someone here has had it and it sounds like your doc isn't treating it in the liver as mine didn't. I did have a parasite that cycled through my lungs, gut and liver. I am wondering if that may have caused it. What is regenerative hyperplasia?

Thanks for answering. Less concerned now.

Kathy in Colorado

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Oh dear', I had to read that again! My son has sarcoidosis in his lungs and I have PBC and Sjogrens. How does the sarcoidosis affect your liver? I know my son is very bad, his breathing is about 60% on a good day and he catches everything going. We live in Ireland and it's a damp climate. Colorado sounds great! Kandiepat

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I really don't know how Sarcoidosis effects my liver. I am trying to find out as my doctor only said I had it but not more. I hope you son stays well.

Kathy

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