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

Please Be Kind & Use Appropriate Language

Let's Keep it Nice & Clean
1. No Spam
2. No Personal attacks
3. No Offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos)
4. No Profanity, sexual references and illegal activity subject matter in the Chat Room.
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. There are many sites for discussing religion and politics. This is not one of them. Divisive posts about religion and politics will be deleted.
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.


Metallic taste?

Started by WyldFlower in General. Last reply by WyldFlower yesterday. 4 Replies

I was wondering if anyone has ever experienced a persistent metallic taste in their mouth? I have been dealing with this issue for a little over a month, it started out just being every once in a…Continue

MY PSC story

Started by realityman in General. Last reply by realityman yesterday. 12 Replies

  Well I was just diagnosed with PSC with compensated cirrhosis, not sure yet exactly what all that is meaning, but that's what prompted me to this site.  I have been having a bloated stomach feeling…Continue

Meld #

Started by Shane in General. Last reply by EAD3 yesterday. 3 Replies

My husband was given his current meld number and he is 5 points away from being eligible for a transplant. I would love to know everyone's experience in this process. Once you became eligible how…Continue

The Start

Started by LillyAnne in General. Last reply by detmsh on Tuesday. 2 Replies

Hello all - this is my first post to the group. The forewarning is that the post is likely more of a general venting more than any questions, but hopefully sharing part of the story will comfort…Continue

Latest Activity

fcmmark left a comment for LightGreen
"Welcome LightGreen to this special group of people.  We all share something in common with PSC…"
1 hour ago
Scott Orn left a comment for LightGreen
"Hi LightGreen! Big welcome! One tip, if you have specific questions it's best to start a New…"
16 hours ago
WyldFlower replied to WyldFlower's discussion Metallic taste?
"Thanks for the feedback.  I am going to have some bloodwork done tomorrow and I will be having…"
realityman replied to realityman's discussion MY PSC story
"  One thing I for got to mention since I last posted last month. I had quit taking the…"

JeffDC left a comment for LightGreen
"Light, I hope you get good news. If not, it can take a while to comprehend psc-it took me several…"
realityman replied to realityman's discussion MY PSC story
"  Thats just it, the second doctor said he didn't think it was PSC thats why he ordered…"
EAD3 replied to Shane's discussion Meld #
"Dear Shane, The MELD# qualifying one for transplant is not fixed around the country.  Some…"
Caregiver Jill replied to Shane's discussion Meld #
"The number does tend to bounce around quite a bit. The length of time for a liver depends a lot on…"

Top Content 

1 Metallic taste?

Metallic taste?

Posted by WyldFlower on December 12, 2014

2 Meld #

Meld #

Posted by Shane on December 16, 2014

3 The Start

The Start

Posted by LillyAnne on December 15, 2014

4 Shortness of Breath

Shortness of Breath

Posted by whitewolf on December 14, 2014

5 MY PSC story

MY PSC story

Posted by realityman on October 14, 2014

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


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.

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

Ben's Friends Monthly Newsletter - November 2014 Issue

Posted by Ben on November 26, 2014 at 11:14am 0 Comments

Just the Stats:

Communities: 38

Friends: 44,000+


Ben's Friends Monthly Newsletter - October 2014 Issue

Posted by Ben on October 25, 2014 at 10:41am 0 Comments

Just the Stats:

Communities: 38

Friends: 43,500+

Connecting to others in a similar circumstance is helpful to decrease depression, anxiety,…




Ben created this Ning Network.

Gift Store

© 2014   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service