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Primary Sclerosing Cholangitis (PSC) - Online Support Group

PSC Diagnosis?

Good afternoon, all. While I haven’t yet received a firm PSC diagnosis, my MRCP last month was “suggestive” of PSC. To quote:

“FINDINGS: Liver contour is smooth. No MR evidence of hepatic steatosis. No biliary dilatation. Mild Irregularity and beading of the intrahepatic biliary duets. Minimal irregularity of the common bile duct. Cholecystectomy. The caudate is not enlarged. No suspicious Iiver mass. No pancreatic ductal dilatation. No pancreas divisum.
Spleen is normal. Normal T1 hyperintensity or the pancreas. Adrenals are normal. No hydronephrosis. Kidneys enhance symmetrically. A 6 cm cyst in the left right kidney.
IMPRESSION:
Mild Irregularity and beading or the biliary ducts, suggestive of primary scleroslng cholangitis. No biliary dilatation.”

I also have elevated bilirubin, and slightly elevated GGT, AST, ALT, and lipase. My ALP is normal. Liver biopsy showed inflammation and minor congestion but no fibrosis. Ultrasound was negative. I do not have IBD, but I do have some IBS that is well treated through diet.

I have frequent RUQ pain and pain in my back on the right side. The pain seems to shift around from just under my sternum, to under my rib cage on the right, to the far right side of my rib cage, and to my back. Like a U-shaped band, but shifting from spot to spot among the band.

I have an ERCP scheduled for this Friday.

Has anyone had a similar course of diagnostics that resulted in a PSC diagnosis? Looking for thoughts and feedback. Thanks in advance. I appreciate this group and those in it.

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Hi Jason,
Thanks for your post today. From everything I’m reading here, it does appear you are describing a possible case of PSC. The description of RUQ pain and pain in your back on right side is very descriptive of the pain I had with PSC, especially when I had a blockage that needed clearing by ERCP. I did though usually have an elevated bilirubin which you didn’t indicate. I hope your ERCP goes well. Just a piece of advice, please make sure the doctor performing the ERCP does this every day, not a doctor in training or an ordinary GI. This is a very invasive but needed procedure in the treatment of PSC. Also, ask them if at all possible to avoid a stent but to just to balloon dilation. Sometimes they have to place a stent but it needs to be removed and/or switched out in a few weeks. Because if you have PSC it will be a breading ground for a bad infection, and you don’t need that.
Let us know how things go!

Mark
PSC 2011 / Liver Transplant 2015

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Thank you for your response, Mark. I also have elevated bilirubin. I forgot to mention that. I will mention the balloon dilation to my dr. Thanks for the tip.

As for having a doctor that routinely performs ERCPs, I believe I’m out of luck. I’m in Mississippi (moved here from Santa Monica 5 years ago). There is only one doctor that does them and he’s about 36 years old. My Hepatologist says he’s very good, though. I’m very nervous about the procedure, but it has to be done. I’m most concerned about the chance of pancreatitis. Had an acute case a decade ago, and it was absolutely horrible. Praying that the ERCP doesn’t trigger it.

Thanks again. I’ll let you know how it goes.

Jason,
Not sure if you’ve ever had an ERCP before, but if not here’s something just to be aware of. This happened to me after every ERCP but it could be individualized. After I was home from the hospital that evening I always threw up at least twice, some nasty black stuff. The doctors said it was blood and all that was scraped out of the bile ducts. He said they do pump your stomach but there’s still more that will come later. So don’t be alarmed when that happens.
Also, eat very light that evening after procedure. Start with maybe some saltine crackers and gingerale. Take it very slowly, maybe adding some applesauce or jello later on that evening. It’s a slow recovery that first day for your stomach, but you should be much better the next day. I would usually have mine done on a Thursday and then rest up Friday and the weekend and was good to go by Monday or sooner.

Mark

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Hi Jason,

Your case sounds similar to mine. I have been tracked for fatty liver since 2006, without a concrete diagnosis. I had obstructive jaundice in 2015 and then doctors thought it might be PSC. they did ERCP but couldn’t completed due to inflammatory on main bile duct. I had colonoscopy and no observation for IBD. I started to take URSO, It reduce liver enzymes into normal range.

I followed up MRCP since last 4 years, no change was observed, last MRCP findings are below, no meaningful change at all from pas 3 ones:

Liver dimensions are normal, hepatosteatosis is observed. The anatomy of the bile duct is generally preserved. On the other hand, there is a focal dilatation of intrahepatic biliary tract that reaches to the subcapsular focal capsule adjacent to the segment 5-8 junction. This cut is characterized by a more marked heterogeneous signal increase in dynamic studies. Finding can be significant in terms of sclerosing cholangitis. It should be evaluated together with the clinic. No additional bile duct pathology or upper abdominal pathology was found.

I stopped using URSO since a year. My last values: AST: 67 (10-37), ALT: 167 (10-40), ALP: 84 (30-120), GGT: 274 (7-49). Total Bil.: 2.49 (0-1.3), Direct Bil.: 0.43 (0-0.39).
My results are more or less same since 2006, still no accurate diagnosis performed.

Good Day,

Ozgun

This will be my first ERCP. Thank you very much for the info. It is very helpful.

Thank you, Ozgun. Have you experienced pain in your right upper quadrant or back? I have near-constant pain in those areas.

Hi,

Not constantly, But sometimes I feel it takes 10-20 min and disappear then.

Do you have IBD as well?

I have IBS. Not been diagnosed with IBD.

Then you should try oral vancomycinDamman_et_al-2018-Alimentary_Pharmacology_&_Therapeutics (1).pdf (491.9 KB)
Oral vancomycin induces sustained deep remission in adult patients with ulcerative colitis and primary sclerosing cholangitis.pdf (143.5 KB)
Rangnekar 2019 Oral Vancomycin Induces and Maintains Remission of Ulcerative Colitis in the Subset of Patients With Associated Primary Sclerosing Cholangitis.pdf (86.0 KB)

Jason, the procedure will take about 25 minutes, maybe an hour of recovery. Your throat will likely be sore, which can be remedied with ice cream and popsicles.

I have had several ERCPs and have not had any complications from them. In being realistic, there can be some complications.

It is a great diagnostic tool, and for placing stents, clearing blockages.

I always request something for nausea right BEFORE the ERCP. The anesthesiologist puts a dime-sized patch behind one of my ears. No more vomiting after the ERCP! I keep it on for 48 hrs before removing it.

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Thanks for that tip Merrywhiterose. I wish I had known that all those years I had ERCP’s. The after effect of throwing up was the worst part for me. I’m glad those are available for you.

Mark