# Latest **URL:** https://forum.livingwithpsc.org/latest.md [Latest](https://forum.livingwithpsc.org/latest.md) · [Categories](https://forum.livingwithpsc.org/categories.md) --- ## [Welcome To Our New Discourse Site](https://forum.livingwithpsc.org/t/welcome-to-our-new-discourse-site/1029)
**Author:** [@ModSupport](https://forum.livingwithpsc.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [August 23, 2016, 5:07pm UTC](https://forum.livingwithpsc.org/t/welcome-to-our-new-discourse-site/1029 "2016-08-23T17:07:36Z")
Were you a member of our old Living with PSC site? Simply LOG IN with your old user name and click on "Forgot password". We will send you a link to claim your old profile. First time visitor? Please go to our Main Page … --- ## [PSC -\> Portal hypertension -\> Splenomegaly -\> Low Platelets](https://forum.livingwithpsc.org/t/psc-portal-hypertension-splenomegaly-low-platelets/47)
**Author:** [@md\_fisher](https://forum.livingwithpsc.org/u/md_fisher)\ **Replies:** 7\ **Last updated:** [April 22, 2026, 9:03am UTC](https://forum.livingwithpsc.org/t/psc-portal-hypertension-splenomegaly-low-platelets/47 "2026-04-22T09:03:45Z")
The above title is the condition my 6 year old daughter is in. Her platelets have been dropping bit by bit from the 150k to 51k over the past year. Her doctors are suggesting it might come to a splenectomy, but her GI di… --- ## [Carvedilol](https://forum.livingwithpsc.org/t/carvedilol/5727)
**Author:** [@jace0221](https://forum.livingwithpsc.org/u/jace0221)\ **Replies:** 5\ **Last updated:** [April 17, 2026, 10:59pm UTC](https://forum.livingwithpsc.org/t/carvedilol/5727 "2026-04-17T22:59:57Z")
Anybody here familiar with this medication? My son’s heptologist has prescribed this because his spleen is slightly enlarged. --- ## [Post Transplant Question](https://forum.livingwithpsc.org/t/post-transplant-question/4581)
**Author:** [@Semperfidelis1964](https://forum.livingwithpsc.org/u/Semperfidelis1964)\ **Replies:** 8\ **Last updated:** [March 16, 2026, 1:03pm UTC](https://forum.livingwithpsc.org/t/post-transplant-question/4581 "2026-03-16T13:03:24Z")
For those who have gone through a transplant, did your doctor keep you on Ursodial? I was under the impression it was used to lower some of my “bad” numbers, however 3 months after surgery all my numbers are back to nor… --- ## [Another cholangitis infection, Part 2](https://forum.livingwithpsc.org/t/another-cholangitis-infection-part-2/5680)
**Author:** [@JeffDC1](https://forum.livingwithpsc.org/u/JeffDC1)\ **Replies:** 8\ **Last updated:** [March 16, 2026, 12:58pm UTC](https://forum.livingwithpsc.org/t/another-cholangitis-infection-part-2/5680 "2026-03-16T12:58:18Z")
Had another cholangitis infection last week, putting me back at Piedmont Hospital from Thursday through Sunday. Luckily, I think I got there early enough that my bloodwork had not gone haywire. My liver levels were prett… --- ## [Jaundice questions](https://forum.livingwithpsc.org/t/jaundice-questions/5712)
**Author:** [@jace0221](https://forum.livingwithpsc.org/u/jace0221)\ **Replies:** 9\ **Last updated:** [March 9, 2026, 4:11pm UTC](https://forum.livingwithpsc.org/t/jaundice-questions/5712 "2026-03-09T16:11:18Z")
I noticed yellowing in the outer corners of my son’s eyes. Its not noticeable unless he looks to the left and/or right. His latest labs had bilerubin at 1.6. No other symptoms present. Is that how jaundice starts? --- ## [Looking for recommendation](https://forum.livingwithpsc.org/t/looking-for-recommendation/5670)
**Author:** [@jace0221](https://forum.livingwithpsc.org/u/jace0221)\ **Replies:** 7\ **Last updated:** [February 16, 2026, 12:38am UTC](https://forum.livingwithpsc.org/t/looking-for-recommendation/5670 "2026-02-16T00:38:53Z")
My son (age 30) was diagnosed in 2016. We started Vanco in 2017 and had immediate positive results. After getting the 1st Covid booster in 2021 his liver enzymes shot back up and have been high ever since. We have als… --- ## [Another Cholangitis infection](https://forum.livingwithpsc.org/t/another-cholangitis-infection/5610)
**Author:** [@JeffDC1](https://forum.livingwithpsc.org/u/JeffDC1)\ **Replies:** 14\ **Last updated:** [February 7, 2026, 2:58am UTC](https://forum.livingwithpsc.org/t/another-cholangitis-infection/5610 "2026-02-07T02:58:29Z")
Hi, PSCers. The first 5 years post-tx were great; a model recovery. I had another cholangitis infection two weeks ago. This is the fifth one in three years. The docs thought that the Roux-Y tube (the tube connecting t… --- ## [Living Donor Needed for PSC Patient (Article)](https://forum.livingwithpsc.org/t/living-donor-needed-for-psc-patient-article/5666)
**Author:** [@fcmmark](https://forum.livingwithpsc.org/u/fcmmark)\ **Replies:** 2\ **Last updated:** [February 2, 2026, 3:18am UTC](https://forum.livingwithpsc.org/t/living-donor-needed-for-psc-patient-article/5666 "2026-02-02T03:18:10Z")
Good afternoon PSC Family, I came across this article on a transplant site this afternoon about a Canadian woman desperately needing a liver transplant. If you have friends or family in Canada or the USA that you think… --- ## [Merry Christmas 2025](https://forum.livingwithpsc.org/t/merry-christmas-2025/5651)
**Author:** [@fcmmark](https://forum.livingwithpsc.org/u/fcmmark)\ **Replies:** 3\ **Last updated:** [January 1, 2026, 2:45pm UTC](https://forum.livingwithpsc.org/t/merry-christmas-2025/5651 "2026-01-01T14:45:04Z")
Greetings to this PSC Community. As we have come to Christmas Eve today, I just want to thank each and every one of you for your contribution to this community. Each post and reply to others facing this disease is meanin… --- ## [Vanco for people older than 40yr](https://forum.livingwithpsc.org/t/vanco-for-people-older-than-40yr/5324)
**Author:** [@Ted](https://forum.livingwithpsc.org/u/Ted)\ **Replies:** 35\ **Last updated:** [December 24, 2025, 8:41pm UTC](https://forum.livingwithpsc.org/t/vanco-for-people-older-than-40yr/5324 "2025-12-24T20:41:54Z")
It is well-established that Oral Vancomycin for PSC works extremely well for children. It also seems clear that it works well for many young adults (patients in their twenties or early thirties). But what about patient… --- ## [New User Guide](https://forum.livingwithpsc.org/t/new-user-guide/4287)
**Author:** [@Rose\_BensFriends](https://forum.livingwithpsc.org/u/Rose_BensFriends)\ **Replies:** 2\ **Last updated:** [December 22, 2025, 5:26pm UTC](https://forum.livingwithpsc.org/t/new-user-guide/4287 "2025-12-22T17:26:48Z")
Are you a new user? Don’t worry we will guide you through the following videos. How to Create An Account? Click the image to watch the video on creating a new account. How to Use this Site? Watch these short video… --- ## [Hi New user here, parent with 16 old girl PSC-UC](https://forum.livingwithpsc.org/t/hi-new-user-here-parent-with-16-old-girl-psc-uc/5479)
**Author:** [@Mathew](https://forum.livingwithpsc.org/u/Mathew)\ **Replies:** 4\ **Last updated:** [December 22, 2025, 5:26pm UTC](https://forum.livingwithpsc.org/t/hi-new-user-here-parent-with-16-old-girl-psc-uc/5479 "2025-12-22T17:26:35Z")
Hi everybody just wanted to say hello and thank you all for this community and especially moderator-s who is doing their best. I am father of 16 teen girl diagnosed with UC from age 1 and PSC from age 8. Sorry for engli… --- ## [Today is Giving Tuesday. Here Are Two Easy Ways to Help Our Community](https://forum.livingwithpsc.org/t/today-is-giving-tuesday-here-are-two-easy-ways-to-help-our-community/5638)
**Author:** [@Ben](https://forum.livingwithpsc.org/u/Ben)\ **Replies:** 0\ **Last updated:** [December 2, 2025, 3:35am UTC](https://forum.livingwithpsc.org/t/today-is-giving-tuesday-here-are-two-easy-ways-to-help-our-community/5638 "2025-12-02T03:35:47Z")
Hi everyone, Today is Giving Tuesday, a day when many people look for meaningful causes to support. If you would like to help our community today, here are two simple and meaningful options. 1) Share our campaign with … --- ## [Our Community Is Coming Together. Here Is How You Can Help](https://forum.livingwithpsc.org/t/our-community-is-coming-together-here-is-how-you-can-help/5616)
**Author:** [@Ben](https://forum.livingwithpsc.org/u/Ben)\ **Replies:** 0\ **Last updated:** [November 25, 2025, 6:17pm UTC](https://forum.livingwithpsc.org/t/our-community-is-coming-together-here-is-how-you-can-help/5616 "2025-11-25T18:17:46Z")
Hi everyone, As we approach the end of the year, our entire Ben’s Friends network is launching our annual community support campaign. Each forum plays an important role, so we wanted to share a few simple ways you can h… --- ## [Why isn’t everyone taking Vanco?](https://forum.livingwithpsc.org/t/why-isn-t-everyone-taking-vanco/5611)
**Author:** [@TomD](https://forum.livingwithpsc.org/u/TomD)\ **Replies:** 7\ **Last updated:** [November 23, 2025, 12:34am UTC](https://forum.livingwithpsc.org/t/why-isn-t-everyone-taking-vanco/5611 "2025-11-23T00:34:22Z")
I’m just curious why everyone on here is not taking vancomycin? --- ## [Diagnostic criteria and New member](https://forum.livingwithpsc.org/t/diagnostic-criteria-and-new-member/5600)
**Author:** [@lilly.mae](https://forum.livingwithpsc.org/u/lilly.mae)\ **Replies:** 7\ **Last updated:** [November 16, 2025, 1:41am UTC](https://forum.livingwithpsc.org/t/diagnostic-criteria-and-new-member/5600 "2025-11-16T01:41:04Z")
Hello everyone, I am Lilly a new member. I am 18 and have been living with Crohn’s disease for 9 years (dx @ 9yrs). In 2022 I started having abnormal stomach pain episodes, pain that would go on for hours and straight bi… --- ## [Nor UDCA](https://forum.livingwithpsc.org/t/nor-udca/5591)
**Author:** [@TomD](https://forum.livingwithpsc.org/u/TomD)\ **Replies:** 1\ **Last updated:** [October 22, 2025, 7:53pm UTC](https://forum.livingwithpsc.org/t/nor-udca/5591 "2025-10-22T19:53:51Z")
I read that 24-norursodeoxycholic acid (Nor UDCA) performed well in phase 2 clinical trials for PSC and is now in phase three which will be completed early 2026. The company will then apply for FDA approval. This is v… --- ## [Please participate in University of BC and Vancouver General Hospital Vancomycin for PSC survey](https://forum.livingwithpsc.org/t/please-participate-in-university-of-bc-and-vancouver-general-hospital-vancomycin-for-psc-survey/5557)
**Author:** [@rjm](https://forum.livingwithpsc.org/u/rjm)\ **Replies:** 0\ **Last updated:** [September 27, 2025, 4:56pm UTC](https://forum.livingwithpsc.org/t/please-participate-in-university-of-bc-and-vancouver-general-hospital-vancomycin-for-psc-survey/5557 "2025-09-27T16:56:53Z")
This is an invitation to participate in a Vancomycin for PSC survey. This is cross-posted to other PSC forums. Hello Friends, I am RJM and I have been a member of this and several of the other PSC pages for the last de… --- ## [GLP-1 and PSC thoughts?](https://forum.livingwithpsc.org/t/glp-1-and-psc-thoughts/5547)
**Author:** [@GlasshalfFULL](https://forum.livingwithpsc.org/u/GlasshalfFULL)\ **Replies:** 3\ **Last updated:** [September 22, 2025, 2:23am UTC](https://forum.livingwithpsc.org/t/glp-1-and-psc-thoughts/5547 "2025-09-22T02:23:21Z")
I can’t loose wait and have tried everything short of just eating all greens. Eat minimal meat take supplements over last 6 months due to a rigorous physical fitness management position. Run, exercise several hrs a day 4… --- ## [New member, new story](https://forum.livingwithpsc.org/t/new-member-new-story/5542)
**Author:** [@Ateragram](https://forum.livingwithpsc.org/u/Ateragram)\ **Replies:** 6\ **Last updated:** [August 22, 2025, 12:32pm UTC](https://forum.livingwithpsc.org/t/new-member-new-story/5542 "2025-08-22T12:32:01Z")
Hello everyone, I’m new here, thank you for letting me join, Doctors have suspected I have psc, but it has not been confirmed. Here is my story. I have had consistently elevated liver enzymes for at least 5 years, firs… --- ## [Slow bleed?](https://forum.livingwithpsc.org/t/slow-bleed/5513)
**Author:** [@MBLand](https://forum.livingwithpsc.org/u/MBLand)\ **Replies:** 6\ **Last updated:** [July 15, 2025, 1:06am UTC](https://forum.livingwithpsc.org/t/slow-bleed/5513 "2025-07-15T01:06:07Z")
Background: UC with ileal ulcers, PSC with stent, banded esophageal varices, portal hypertensive gastritis (mild?), iron deficiency anemia, MELD 9 (three weeks ago), slight fever, normal BP and pulse Been having two wee… --- ## [What is PSC?](https://forum.livingwithpsc.org/t/what-is-psc/5520)
**Author:** [@ModSupport](https://forum.livingwithpsc.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [June 3, 2025, 8:44am UTC](https://forum.livingwithpsc.org/t/what-is-psc/5520 "2025-06-03T08:44:30Z")
Primary Sclerosing Cholangitis (PSC) is a rare and chronic disease that is characterized by inflammation and scarring within the bile ducts, causing them to narrow and, eventually, become completely obstructed. This, in … --- ## [PSC - Vanco dosage question](https://forum.livingwithpsc.org/t/psc-vanco-dosage-question/5518)
**Author:** [@Mirei81101](https://forum.livingwithpsc.org/u/Mirei81101)\ **Replies:** 5\ **Last updated:** [June 1, 2025, 9:02am UTC](https://forum.livingwithpsc.org/t/psc-vanco-dosage-question/5518 "2025-06-01T09:02:07Z")
My 16 year old daughter has had PSC since age 4. She has been well conrolled on 250 mg 2x a day of Vancomycin for all this time. Recently her doctor did a colonoscopy and it shows microscopic colitis. She now wants to g… --- ## [PSC Family Toolkit](https://forum.livingwithpsc.org/t/psc-family-toolkit/5519)
**Author:** [@ModSupport](https://forum.livingwithpsc.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [May 23, 2025, 2:43pm UTC](https://forum.livingwithpsc.org/t/psc-family-toolkit/5519 "2025-05-23T14:43:03Z")
A helpful guide for patients, families, and caregivers living with Primary Sclerosing Cholangitis (PSC). :blue\_book: 1. PSC Glossary: Terms You’ll Hear ERCP / MRCP Imaging tests used to view the bile ducts. ERCP is in… --- ## [I need to vent about my experience with PSC](https://forum.livingwithpsc.org/t/i-need-to-vent-about-my-experience-with-psc/5436)
**Author:** [@opheodrysaestivus](https://forum.livingwithpsc.org/u/opheodrysaestivus)\ **Replies:** 7\ **Last updated:** [May 23, 2025, 11:44am UTC](https://forum.livingwithpsc.org/t/i-need-to-vent-about-my-experience-with-psc/5436 "2025-05-23T11:44:39Z")
I’m feeling really bad right now and just want to share my situation. I went to the doc in 2021 because I was suddenly nauseous every day. They ran a million tests, told me I had Crohn’s disease, and sent me on my way. A… --- ## [Joining Care Givers](https://forum.livingwithpsc.org/t/joining-care-givers/4806)
**Author:** [@ModSupport](https://forum.livingwithpsc.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [November 9, 2021, 10:04pm UTC](https://forum.livingwithpsc.org/t/joining-care-givers/4806 "2021-11-09T22:04:51Z")
Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them. … --- ## [New Theme for PSC Community Site](https://forum.livingwithpsc.org/t/new-theme-for-psc-community-site/5516)
**Author:** [@fcmmark](https://forum.livingwithpsc.org/u/fcmmark)\ **Replies:** 0\ **Last updated:** [May 21, 2025, 2:59am UTC](https://forum.livingwithpsc.org/t/new-theme-for-psc-community-site/5516 "2025-05-21T02:59:17Z")
Dear Members, We have been working on developing a new theme for our PSC site. We are hoping to consolidate some categories, etc., and to give a little facelift to our site. We would appreciate your feedback once we p… --- ## [Norudca Phase 3 results available in May](https://forum.livingwithpsc.org/t/norudca-phase-3-results-available-in-may/5505)
**Author:** [@Ted](https://forum.livingwithpsc.org/u/Ted)\ **Replies:** 9\ **Last updated:** [May 13, 2025, 10:26pm UTC](https://forum.livingwithpsc.org/t/norudca-phase-3-results-available-in-may/5505 "2025-05-13T22:26:47Z")
This is promising news. I first heard about Norudca when I got diagnosed more than 10 years ago. Hopefully the long wait is over and this turns out to be a real cure or treatment. List of accepted late-breaker EASL abs… --- ## [Infection](https://forum.livingwithpsc.org/t/infection/5504)
**Author:** [@wqc](https://forum.livingwithpsc.org/u/wqc)\ **Replies:** 19\ **Last updated:** [April 15, 2025, 12:50am UTC](https://forum.livingwithpsc.org/t/infection/5504 "2025-04-15T00:50:31Z")
I’m looking for some help. I had a transplant (tx) June 2021 and for all intents and purposes the last three+ years have been a nothing burger. I’m healthy, gaining weight (which I lost a ton of before transplant) and f… [Next page](https://forum.livingwithpsc.org/latest.md?page=1)