Hello everyone I am a 38 year old female after falling ill last year went to the doctor and was diagnosed with psc via three mrcp, blood test (lft) ast-100’s alt-100’s alp-400’s ggt-700’s and a host of other tests to rule out many other things. I have had some mild symptoms for about a year itching, fatigue, some dizziness. I have been told by two different Hepatologist that I had psc also. I recently had an ERCP done and was told that my imaging tests were over analyzed and he saw no signs of psc. My mri said multiple intra and extra hepatic strictures and a dominant common hepatic duct stricture. I have no ibd diagnosis when colonoscopy was done it shied no signs but I struggle with stomach rumbling, constipation and gas all the time. My mri also stated that there were a few cysts on my kidney and liver. As I was told that this was normal and nothing to worry about. Should I seek a second opinion or should I continue to try and figure out what the problem could be. Also I sustained an injury to my pancreatic duct during the ERCP procedure and had to have a stent placed in my pancreatic duct. Just looking for any suggestions on where I should go from here…? Thanks so much.
Davissontiya,
Thanks for your post. I’m very sorry you had such a poor experience with your ERCP. That is one of the risks that can happen. Just a few questions to get a better picture in my mind to be able to give you a recommendation.
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What was your bilirubin and INR levels when you went in for the procedure. What were those same readings if there have been labs done since that time?
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You mentioned that you have seen two different hepatologists. Were they the same ones who ordered the ERCP as well? Are these hepatologist with a transplant hospital?
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Was the ERCP done by your GI or by a specialist in advanced endoscopy associated with a hospital that does liver transplants?
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The fact that your MRCP indicated multiple strictures give me concern that the one doing the ERCP missed something. Have they mentioned that they must go back in and remove that stent in a few weeks?
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How has your itching been since the ERCP?
We are here to support you anyway we can. Many of us have been down the road you are facing right now and I tell you there is hope and help through all the physical suffering. Don’t give up on that. I look forward to your response.
Mark Wilson, Moderator
Primary Sclerosing Cholangitis (PSC) Support Group
Good afternoon. Thanks for your response.
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My bilirubin level was a 0.8 and my Inr-1.0
that was before the procedure. -
Both Hepatologist are from the Cleveland Clinic I was under the impression and when asked was told that one of the doctors was the head transplant doctor for the clinic.
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My procedure was done by a specialist at the Cleveland Clinic. When I did research on this doctor they said he’s a part of a liver transplant team.
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It was mentioned that they would perform an ultrasound first to see if the stent fell out on its own or if they have to go back in to remove it. Within the next two weeks.
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My itching has somewhat subsided but I still have the itching on and off particularly at night it gets so bad.
Well it sounds like you are in excellent care at Cleveland Clinic. That is certainly a great hospital. It’s a shame you had the incident with the ERCP. That’s why I asked if it was a GI that did it instead of a specialist. It is possible that they had a resident do it if they are a teaching hospital. None the less, things happen but you should be fine in that respect.
Well your bilirubin and INR are pretty good. One indicator for me that I had a bile duct blockage was when my bilirubin got up to 4.0 to 5.0. I would also have pain that went around my right side to my lower right back. But from what you are stating with such low bilirubin his findings sound about right. It would be interesting to have another radiologist read the MRCP and see if they come up with a different diagnosis/findings.
If your itching continues to get bad, one thing that really helped me was my hepatologist prescribed Rifampin. It doesn’t work for everyone and there are other things out there, but it brought my itching under control by 98%. I took 300 mg twice a day for 4 years prior to my transplant.
Well until something else shows up I’d encourage you to get an MRCP once a year and see your hepatologist every 6 months with labs. Every doctor has a slightly different protocol but that’s the average until things get worse. Hopefully you will be stable for a very long time. Do let us know how you are doing as time goes by. Take care.
Mark