Dear members
I was diagnosed wit PSC in 2014 at age 14. My Lfts where moderatly elevated but the bilirubin was normal and it still is. I was always asymptomatic until I’ve been struggling with severe itching at night. My Mrcp showed a stenosis of the left ductus hepaticus. And my ALP was moderately elevated. Last week I got an Ercp and they dialated the stenosis. After the Ercp I had a pancreatitis and my Lfts and ALP got worse than ever. Unfortunately they stayed worse even after the pancreatitis and the itching remains the same. I am very confused by this , since the doctors told me that the stenosis is gone, which supposedly made my ALP go up in the first place. Besides that I don’t understand how my bilirubin can be normal at the same time. Has anyone had a similar experience?
Kind regards
Elinaa,
I’m sorry that you had a bad experience with your ERCP. Unfortunately, pancreatitis is one of the risks with an ERCP. This is one reason why I highly recommend you make sure the one performing the procedure next time is a specialist in advanced endoscopy, not just your local GI doctor or a new doctor in training. This is a very invasive and specialized procedure. Although pancreatitis is still a risk, having a specialist that does these procedures every day of the week gives you a person that is an expert in their field. This will reduce that risk significantly. There are probably still some strictures in the ducts that need to be cleared. Another possibility is that they got something in the pancreatic duct during the procedure. If they put any stents in those need to be changed out within a few weeks or there’s the risk of infection. Hopefully you will be on the mend soon. I wish you well.
Mark
Mark,
thank you for your answer. I went to a specialist who does the procedure every day at the best known clinic in my city, but I guess it is just one of the risks. I don’t have any stents and they did an ultra sound and said everything looks fine, I am hoping that I can convince my doctor to do an mercy to see if there are still strictures. What do you mean by something like could they have gotten bacteria in the pancreatic duct ??
kind regards
When they go in to do an ERCP they enter through the common bile duct. From this duct the bile ducts go in one direction and the pancreatic duct another. I’m wondering more about possibly a stone or something maybe got into the pancreatic duct that triggered the pancreatitis. Of course that’s just one possibility. I’m glad to know they did not do any stents. Usually the balloon dilation will keep the bile ducts open for a good while during early stages of PSC. However, the more advanced the disease progresses, the more difficult to clear the strictures, especially when they start stricturing up in the small ducts of the actual liver itself. At that point there’s not much that can be done to clear those. For you to continue to have itching after the procedure tells me that there are still some blockages in there. Did he mention about the condition of both the left and right hepatic ducts when he did the ERCP? I’d certainly encourage you to follow up with the doctor sooner than later. I’ve had ERCP’s as close as 1 week apart so it may be needed to go back in. They might want to do another MRCP to evaluate exactly what’s going on. That is much more accurate than an ultrasound.
Mark
Elinaa, I have had several ERCP’s and the only thing I noticed afterwards was that my throat was sore for a few hours.
I know that procedure can have its share of complications, but it is a wonderful diagnostic tool and duct fixer upper.
Jeff
They told me that my bile ducts look typical for PSC. But apparently the left hepatic and the common bile duct are mainly affected. In the report it said they didn’t look into the pancreatic duct because they took some cells and didn’t want to irritate it. I am still waiting foe the final report. It’s been a month, I honestly don’t know what is taking them so long. They wanted to do another ERCP at first but they said my bilirubin was low so they told me they think it wouldn’t help because the cause could be molecular. I don’t know, so far every doctor there has told me something else. I am having a follow up soon.
Thank you for your answer I will definitely ask my doctor about a possible stone and another ERCP.
Tjank you for your answer Jeff. Maybe I was just unlucky. They apparently took a few cell samples, maybe this m´could have and eat worse. Has every ERCP helped you so far ?
Hello Elinaa! We’re glad you joined the group and hope we can help with your questions and concerns. For me ERCPs are very helpful in determining changes within my ducts. In 2018 alone, I underwent 8 ERCPs, whether it was placing and/or removing stents. I’m back to my baseline, even with night itching. To note, there was a three year period I did not have to make a hospital visit.
I’m so sorry you’ve had such a bad experience with ercp. It is a very risky procedure that should be avoided unless there is a compelling reason such as chronic infection or highly elevated liver function tests. The few times I’ve had ERCP I always get a blood infection. If you get another one insist on an antibiotic during and for ten days after the ercp.
The scopes they use are too complex to be sterilized. They are cleaned with antiseptic chemicals but viable microbes can live on the scopes. So there is always risk of inflammation and infection. Here in California use of stents is disfavored.
I had terrible itch while still in an early stage of PSC. It is a nightmare except you’re not sleeping. Itch can occur at any time and so does not indicate advanced disease. There are some medications you can try to help with itch. A recent study found that the antidepressant sertraline may help. I found help with acupuncture and light therapy. The itch stopped in less than a year but ten years later, it returned. I am using various topicals, cholestyramine, sertraline and for insomnia-Ambien. I’m also getting acupuncture which is helping. There are other drugs but they have side-effects.
You mentioned that you were diagnosed at 14. Has your doctor suggested vancomycin? It has cured many young children. I just met a Medical student who was diagnosed with PSC at 15 and started vancomycin a few years later. She is in her 20’s now and has normal blood levels and no beading in bile ducts. The doctor who pioneered this treatment is at Stanford University-Dr. Cox. His success rate with children has been very high. I don’t know his success rate with teens and adults. But I know that without vancomycin the medical student I met would not been well enough for medical school. You might want to discuss with your doctor.
I’ve had PSC for 20 years and I still have my original liver although it’s in stage 4. Remember to love your liver. I hope you can beat off that itch soon.
Elinaa, I’m also sorry for your experience. Given that you were dx as a pediatric patient you could be especially responsive to vancomycin. I can send you information on this if you are interested. My daughter’s bilirubin has never been high but her ALP, AST, ALT, and GGT were all highly elevated until she got on vancomycin 8 years ago. She has been normal since.
Thank you for your answer !! The itching is terrible but I am on cholestyramine now and it helps with the itching but I have anemia due to an iron deficiency since I take it. Unfortunately I don’t live in the States and my doctors are skeptical about vancomycin. I am very disappointed tbh because they never even told me about vancomycin and when I spoke to them about it they told me it wouldn’t help with the itching and it would be something experimental to try … I am speaking to one of them again this week, I hope that she is willing to try it. I am very scared that I might need a transplant one day, but they don’t seem to understand that.
Hi!! Thank you so much for your answer. I am happy for you and your daughter. Yes I would be very glad if you could send me more information on Vancomycin. I wish they would have tried it when I was first diagnosed.I am scared that it will work worse now or whenever a doctor will prescribe it. Unfortunately I don’t live in the US and my doctors have been kind of unwilling to try it so far, they never even mentioned it. I am trying to convince them at the moment. Has your daughter experienced had any side effects ?
Kind regards
@Tracy_BarwickThank you for your reply!! Did your doctors tell you something about hoe many weeks apart each ERCP should be and what has helped you the most with itching ?
Elinaa, I’m so sorry for the late reply. If I can remember correctly the first 4 years of my diagnosis, I received ERCPs every 3-4 weeks (whether removing or inserting stents). Afterwards, it was decided to leave them in longer, up to 3 months. Needless to say, only otc Benadryl was prescribed but it made me so lethargic and sometimes nauseous. I ultimately took it upon myself to just deal with the itching without meds. Elinaa, please follow your doctor’s orders. Over time you will become more informative and decide (with your doctor’s consult) how you care for your symptoms. As you can tell, we all are thriving and moving along with our lives. Don’t allow these moments to overtake your will to achieve your goals. We are here for support. With love, Tracy