My son has pancolitis/PSC age 20. His stuff has been controlled the past couple years. My son has some blood tests done, and they found epstein-barr virus dna in his blood, last year and now this year as well. It says he has a past,present and current mono infection last year labs AND this year…how is that possible? I thought you could only get Mono once?
Anywho, what was interesting is that it can cause elevated liver enzymes ,and Seth’s AST is way elevated. Nothing else is off in his CBC/cmp except his BUN is 8. His MRCP the previous Week, showed nothing. Perfectly normal…my son has Small duct PSC confirmed w liver biopsy in 2017.
anyways my sons pancolitis and PSC, presented oddly and suddenly with a crazy inflammatory autoimmune skin disease called Cholinergic/autoimmune urticaria first then liver disease, then bowel issues.
I guess I am wondering if EBVirus could be another cause of secondary sclerosing cholangitis.
Seth is in a bad flare now and it is just scary with all the stuff going on in this world. He had to come home from the University due to pandemic and will be home for the remainder of this year. I know I am all over the place. Thanks guys for any advice! I know it’s a difficult question, and probably half crazy. But Seth got Mono before he got his weird skin thing years ago, and now I just wonder if it could have caused all of this mess??
My son had a very similar presentation, same diagnosis and same age. He had Epstein-barr before his diagnosis maybe within a year. He was also on some medications that appear to have cause some serious skin issues although I don’t know if they are the same as your son’s. There are certainly some theories around Epstein Barr and autoimmune diseases as discussed here:
But it’s no doubt difficult to draw clear conclusions.
My son’s MRCP is normal now too, labs are good. He has no sign of UC now and is no longer on any medication for it but did present with significant symptoms.
Do you mind me asking if your son is on any medications? Best wishes
Thank you so much for the info, I really appreciate it. His skin was called Cholinergic or idiopathic urticaria, the biopsy said it wasn’t urticaria by the way, so some doc call it autoimmune urticaria, just for the info. He’s going for autonomic testing due to another doc thinking his skin thing is neurologic. He takes balsalazide disodium 750 mg x9 per day, URSO,VSL#3 those are the main ones, he takes a antibiotic sporadically for acne, and a few supplaments. He was stable past year and a half, then he went off to college for the year, and his Candidia (his endoscope showed Candidia in Esophagus 2017, he’s had 4;bouts of it since then) he was treated w fluconazole, but it too has come back this past week. Gladly his GI flare is subsiding. It’s been a rough few months since he came home in April. He redid some blood work when he came back from college, and the Epstein-barr came back positive again. So now he’s being sent to infectious disease over a telemed appt, I just get so frustrated at the unfairness of a young 20 year old man being burdened with such serious health problems when he is so young. It’s just so unfair . Thank goodness it seems his PSC isnt advancing , good news in that of coarse!
Thanks again for this site, and you all.
Sincerely, Tina (Mom)
I’m so sorry, it sounds like you’re going through a lot. I cried for 6 months after diagnosis. Everywhere I went I kept crying, supermarkets, doctors appointments for the same reason, it’s just so unfair. But, small duct PSC follows a much milder course so I think there are a lot of reasons for you to feel hopeful. Also I think they, our children, cope better with it than we do sometimes. I know my son just wanted to get on with his life and not think about medical issues all the time.
I hope you get some answers about his skin issues and get control of the Epstein Barr which I imagine is a real concern.
Keep posting here, everyone is helpful and hopeful. Vancomycin is definitely an option, many people get an excellent response from it.
You said something that hit home. It is often a lot harder on the family than it is on the person who has psc. I saw this with my wife.
My wife had it harder by seeing her teddy bear/security blanket turn in to someone who looked like a concentration camp survivor. She does not like surprises, which is all of what PSC is. So it was hard physically on me, but emotionally harder on her.
Hello,and thanks again for all your support. I had to just vent and get it out, and you all are right, I think it is harder at times for me than for my son, Definitely!!! Being a parent is tough enough on your heart. This has just been gut wrenching for me at times. Since 2015 it has been up and down as you all know it can be, then stable, then not. It’s just the coarse of these autoimmune diseases, just a fact of life now for all involved. I try not to let it get to me , most of the time.
My son is doing better today. We are lucky to live in the mountains, where it’s cooler!
I read everything on this site and just am amazed at ya’lls strength! You are all warriors!
Have a blessed day😎 Tina
I first had Cholangio CA and had part of my liver (w/ tumor) resected in 2018. The liver sample came back showed that it was EBV related. At that time I wasnt aware that I had PSC and after resection my liver enzymes still did not return to normal. It took us nearly a year to confirm that I had PSC after my cancer treatment. I am now 30 and really didnt know when it all started. I now have regular stenting in my common bile duct and require a stent exchange every 3-4 months.
I always wonder if I was the only one who had EBV-related kind of PSC but looks like I am not the only one. I have tried vanco like many suggested and it really didnt work on me as I presume that the strictures in the bile ducts are not caused by bacteria. I dont have any skin problem or IBD/colitis as far as I know. I hope future research will look more into this direction. It’s a really tough sickness! I really hope my liver transplant will help cure it one day.
Epstein-barr virus will stay in the blood stream even if not active. Here is our just published paper https://www.tandfonline.com/eprint/N8PXYYWEHJJCPSQM7Q6V/full?target=10.1080/00365521.2020.1787501 (Open-label prospective therapeutic clinical trials: oral vancomycin in children and adults with primary sclerosing cholangitis)
I can send you a PDF if you email me directly. Based on your son’s age and symptoms he may do well on vancomycin. Also his presentation sounds identical to my daughter’s: https://gostanford.com/feature/indomitablespirit?utm_source=fb-organic&utm_medium=commpost_2019-05-09_1A2B4C&utm_campaign=lacrosse_otherpd_feature__
I am new to this site and so grateful for all the information here! My 15 year old daughter was just diagnosed with PSC a few weeks ago. Unfortunately, in a bizarre coincidence, we were already familiar with this disorder as a close family friend had PSC.
I came across the abstract for this paper yesterday. Could I get the full PDF? I would love to see the whole thing.
I am SO sorry. Does she also have UC? Here is the paper. I have lots of other papers I can share as well. I tried to send but the message was rejected. You can email if you want them.
Cynthia Buness, MBA, JD
Patient and Research Advocate for Primary Sclerosing Cholangitis
Ali 2020 Open label prospective therapeutic clinical trials oral vancomycin in children and adults with primary sclerosing cholangitis.pdf (1.67 MB)
Thank you so much!
Yes my daughter has UC. She was diagnosed with both UC and PSC at the same time. Her symptoms started with crazy itching of her hands and feet at the end of April completely out of no where.
I can’t tell you how much hope the the Stanford article about your daughter gives me! My daughter is quite an athlete as well and the last 3 months have been devastating for her. She became very sick very quickly and went from sports practices several hours a day to being exhausted itchy and then losing 15 pds with multiple stays in the hospital — its been a very difficult few months. Her UC is now under control with Remicade and we are working on the PSC! It’s a lot to tackle all at once.
Thanks you so much for the article!
I’m not sure about the email? Could it Be bc I just joined the site?
Ellie, I can email you a plethora of published papers and the guidelines for treatment if you are interested. Do you have a physician willing to try vancomycin? If your daughter responds to vancomycin she may not need Remicade or any other meds. Let me know. /C
What sport does she play?