1. < Digestive Health

Primary Sclerosing Cholangitis (PSC)

Posted by szelisk @szelisk, Nov 17, 2024

Finally, after 10 years and switching GI physicians, I found out that not only was I born with a defect in my pancreas, but I also had Primary Sclerosing Cholangitis (PSC). My GI is bringing other physicians and specialties to the mix now. Can anyone give me an idea of what tests I should be prepared for?

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cheryl46 | @cheryl46 | Nov 18, 2024

Hi there, I am a GI nurse and have had many patients with PCS, my father in law included.
Have they been able to stage the progression of your disease?
If not done, I would think the next step would be a liver biopsy. I'm really surprised it took so long to diagnose. Normally it is one of a few tests checked for anyone with elevated liver enzymes, jaundice, or a history of Gout.
I will keep you in my prayers

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2 replies
szelisk | @szelisk | Nov 20, 2024
In reply to @cheryl46 "Hi there, I am a GI nurse and have had many patients with PCS, my father..." + (show)
@cheryl46

Hi there, I am a GI nurse and have had many patients with PCS, my father in law included.
Have they been able to stage the progression of your disease?
If not done, I would think the next step would be a liver biopsy. I'm really surprised it took so long to diagnose. Normally it is one of a few tests checked for anyone with elevated liver enzymes, jaundice, or a history of Gout.
I will keep you in my prayers

Jump to this post

Unfortunately, I am one of those with normal enzyme levels—no history of jaundice or gout. The fecal calprotien test was the only thing elevated.

Thank you! 🙂

REPLY
ariglo | @ariglo | Nov 21, 2024
In reply to @cheryl46 "Hi there, I am a GI nurse and have had many patients with PCS, my father..." + (show)
@cheryl46

Hi there, I am a GI nurse and have had many patients with PCS, my father in law included.
Have they been able to stage the progression of your disease?
If not done, I would think the next step would be a liver biopsy. I'm really surprised it took so long to diagnose. Normally it is one of a few tests checked for anyone with elevated liver enzymes, jaundice, or a history of Gout.
I will keep you in my prayers

Jump to this post

Hi Cheryl
My daughter is 45 and diagnosed with PSC 6 years ago. They gave her 10 years to live. What am I to do with that?
Do you have any sources for me to follow? Has any one outlived predictions? I need some serious and honest answers as to what to expect. She lives in Phoenix. The doctors don't say much to her. She tries to eat right, etc. I just need to know what to expect. Thanks for any help you can give to me. Ari

REPLY
1 reply
szelisk | @szelisk | Nov 21, 2024
In reply to @ariglo "Hi Cheryl My daughter is 45 and diagnosed with PSC 6 years ago. They gave her..." + (show)
@ariglo

Hi Cheryl
My daughter is 45 and diagnosed with PSC 6 years ago. They gave her 10 years to live. What am I to do with that?
Do you have any sources for me to follow? Has any one outlived predictions? I need some serious and honest answers as to what to expect. She lives in Phoenix. The doctors don't say much to her. She tries to eat right, etc. I just need to know what to expect. Thanks for any help you can give to me. Ari

Jump to this post

I'm so sorry to hear that.

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cheryl46 | @cheryl46 | Nov 21, 2024

Has she had a liver biopsy to determine what stage? Have they discussed putting her the transplant list?
Unfortunately, this is an autoimmune disease and there is no cure except transplant.
If her doctors are not working on that or not giving her the information/help then PLEASE seek a second opinion.
I am attaching a link to a article I found regarding a new study that has shown wonderful results.
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