Welcome! You're not alone.

If your family has been affected by Primary Sclerosing Cholangitis (PSC), consider Living with Primary Sclerosing Cholangitis (PSC) your second home.


1. Become a Member
2. Make Friends
3. Post to a Forum
4. Read or write a Blog
5. Join or Create a Group
6. Follow us on Twitter
7. Become a fan to our Facebook

Got some QUESTIONS? 
Check our FAQ PAGE.

Read More from our  First-Time-User Guide.

Concerned About Privacy

Since content and usernames are searchable on this site, you may protect your anonymity by creating a unique username.

To change username, click here. 

Need a Doctor or Specialist?

Join Ben's Friends


All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health never disregard professional medical advice or delay in seeking it because of something you have read on this site.




Pictures please

It would be great if members could add a picture of themselves to their profile. It makes talking to each other or responding to questions so much more personal.

Community Moderators

Have a question, concern, or suggestion? Or would you like to volunteer?

Please send a private message to a moderator.


Please Be Kind & Use Appropriate Language

Let's Keep it Nice & Clean
  1. Describe (share experiences), not Prescribe (suggest treatment for others).
  2. No spam.
  3. No personal attacks or defamatory posts.
  4. No offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos).
  5. No specific doctor or hospital name mentioned in a negative context, for legal reasons. Specific doctor or hospital names in a positive context are welcome.
  6. No sharing of members' posts to other sites without their express permission.
  7. No solicitations or promotions of goods or services. No fundraising without the permission of the moderators.
  8. No email addresses or phone numbers on the forum, please.
  9. We welcome people of any faith and no faith, but we ask that you not evangelize or attempt to impose your belief system on other members.
  10. Check your politics at the door, please.

Thanks for your cooperation.


BensFriends.org is proud to partner with a number of organizations to help our members in various areas, including legal, financial, research and medical. 

Know more about our PARTNERSvisit this link.


How common is PSC?

What is primary sclerosing cholangitis? Primary sclerosing cholangitis is a liver disease in which the bile ducts (small tubes through which bile flows from the liver to the gall bladder and intestines) progressively decrease in size due to inflammation and scarring. As a result, bile that is normally carried out of the liver accumulates within the liver, which then damages liver cells. How common is primary sclerosing cholangitis? Although primary sclerosing cholangitis has been considered a rare disease, recent studies suggest that it is more common than originally thought. The disease may occur alone, but frequently exists in association with inflammatory diseases of the colon, such as chronic ulcerative colitis. Primary sclerosing cholangitis affects both sexes, but is more common in men.

Mobile App and E-Book Available

Keep in touch with friends. Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now!

Be inspired by the helpful tips and amazing stories of patients with rare diseases. Get the e-book "We're in This Together: Stories & Tips from Patients with Rare Diseases" HERE.

Itching or Pruritis

Information on itching caused by Liver disease along with some suggestions for relief. http://www.hcvadvocate.org/hepatitis/factsheets_pdf/pruritus.pdf

What is PSC?

Primary sclerosing (skluh-ROHS-ing) cholangitis (koh-lan-JIE-tis) is a disease of the bile ducts in your liver. The term "cholangitis" in primary sclerosing cholangitis refers to inflammation of the bile ducts, while the term "sclerosing" describes the hardening and scarring of the bile ducts that result from chronic inflammation.


PSC and diabetes

Started by Stephen in General. Last reply by Alix 1 hour ago. 4 Replies

Hello,Just wondering how many members have PSC and diabetes ? I was diagnosed with diabetes, type 2 insulin about 8 weeks ago.A few weeks back I was diagnosed with a Nast sepsis liver infection or…Continue

Profound fatigue

Started by Stephen in General. Last reply by Stephen 6 hours ago. 2 Replies


Diagnosed with PSC

Started by TD in General. Last reply by TD yesterday. 6 Replies

Hi all,A bit of background first :). I was diagnosed with UC at 25, and have been treating it on and off for a few years. I started on Mezzevant about 5 months ago, and its working wonders, with…Continue

PSC & Pregnancy update

Started by Ivy in General. Last reply by Anna yesterday. 2 Replies

After a pretty smooth pregnancy, I started developing edema in my feet/ankles/legs a few weeks ago. My albumin levels also started dropping and despite increasing my protein intake nothing seems to…Continue

Latest Activity

Alix replied to Stephen's discussion PSC and diabetes
"That's not great should I develop diabetes. Frequent infections,…"
1 hour ago

Stephen replied to Stephen's discussion PSC and diabetes
"Hi Alix, Thanks for responding. Thanks for the link as well. Having diabetes and PSC has…"
6 hours ago

Stephen replied to Stephen's discussion Profound fatigue
"Hello Brave Bunny, Thank you for your reply. I am glad you are feeling better. You have a double…"
6 hours ago
nelly madore liked Stephen's discussion Profound fatigue
13 hours ago
brave bunny replied to Stephen's discussion Profound fatigue
"Stephen, thank you for posting this link. Fatigue has been an issue for me since my experience with…"
21 hours ago
Alix replied to Stephen's discussion PSC and diabetes
"I've wondered about this myself as my PSC stems from autoimmune pancreatitis (most AIP…"

Stephen replied to Stephen's discussion PSC and diabetes
"Well, I guess nobody has diabetes."

Stephen posted a discussion

Top Content 

1 Profound fatigue

Profound fatigue

Posted by Stephen on March 26, 2015

2 PSC & Pregnancy update

PSC & Pregnancy update

Posted by Ivy on March 24, 2015

3 PSC post-transplant.

PSC post-transplant.

Posted by Payton on March 22, 2015

4 We had our transplant!

We had our transplant!

Posted by Gloria on March 1, 2015

5 PSC and diabetes

PSC and diabetes

Posted by Stephen on March 24, 2015

6 PSC Transplant Rejection Risk

PSC Transplant Rejection Risk

Added by Paul Hain on March 19, 2015

7 Who's using Vancomycin?  What has been your experience?

Who's using Vancomycin? What has been your experience?

Posted by Crewmom on March 12, 2015

8 Oldest person with PSC

Oldest person with PSC

Posted by Smittysgirl on March 16, 2015

9 Sneezing..


Posted by Alix on March 25, 2015

10 Local Fundraiser for Ben's Friends

Local Fundraiser for Ben's Friends

Added by Scott Orn on March 22, 2015

Please click on FIRST TIME USERS and WELCOME tabs for helpful information, and also the Help tab for Links.


Help Us Help Others

Help Ben's Friends

Like & Follow Us!

Follow Me on Pinterest

Give Us A Review

Bens Friends

To Support LivingWithPSC.org, Click an Ad. Or Two.

LivingWithPSC is a peer-to-peer network

To get support, give support.

Are You in Crisis?

First take a deep breath, then call the National Suicide Prevention Hotline immediately.  1-800-273-TALK for members in the United States.

For international members, please visit http://www.suicide.org/international-suicide-hotlines.html for information on where to call.

Blog Posts

Local Fundraiser for Ben's Friends

Posted by Scott Orn on March 22, 2015 at 11:34am 0 Comments

I wanted to share some good news from a local fundraiser we did last night in San Francisco. Some friends of mine wanted to support Ben's Friends so they held a "bar night get together for Ben's Friends."

It was a big success as we…


PSC Transplant Rejection Risk

Posted by Paul Hain on March 19, 2015 at 1:09pm 1 Comment

I saw my post transplant hepatologist yesterday for my annual visit. I had my transplant 3 years ago. He told me that PSC patients that have been transplanted have a higher than average risk of organ rejection.  Has anyone else been told that?



Ben created this Ning Network.

Gift Store

© 2015   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service