Welcome

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.

NOW....GET STARTED:

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. 

Birthdays

Need a Doctor or Specialist?

Join Ben's Friends

Disclaimer

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.

Photos

Loading…

Groups

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.

ClinicalTrials.gov Studies

Loading… Loading feed

Community Moderators

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

Please send a private message to a moderator.

Priya
JeffDC
FCMMark
Stephen
Anna

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.

Partners

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.

Forum

http://www.iflscience.com/health-and-medicine/medical-marijuana-shows-promise-against-autoimmune-diseases

Started by Dennis in General. Last reply by JeffDC 1 hour ago. 1 Reply

According to this article marihuana could regulate immune response, suppress inflammation and shows promise against autoimmune diseases. Did anybody see positive results in their lab tests after…Continue

LFTs, how high can they get?

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

I've been up half the night itching and figured that writing my first post could be a good distraction. I'm wondering about LFTs and how high they can get, particularly just before transplant?My…Continue

Tags: pre, transplant, enzyme, liver, levels

Deal with jaundice

Started by DHZ in General. Last reply by DHZ 21 hours ago. 6 Replies

Basically jaundice and itching are the only main symptoms I have since my diagnosis in 2007. I only had one possible cholangintis a few years ago. I do feel tired all the time but it has been taken…Continue

Is this right doctor?

Started by Matt in General. Last reply by Stephen yesterday. 4 Replies

I haven't posted anything for awhile but I was hoping to get some feedback about choosing the right PSC doctor. I have been a patient at Brigham and Womens for UC for 16yrs. I really like my GI…Continue

Latest Activity


Moderator
JeffDC replied to Dennis's discussion http://www.iflscience.com/health-and-medicine/medical-marijuana-shows-promise-against-autoimmune-diseases
"Gnarly, dude."
1 hour ago

Moderator
Stephen replied to Jules's discussion LFTs, how high can they get?
"Hi Jules, I think that transplants are complex enough that LFT's and Meld are just one…"
6 hours ago
Dennis posted a discussion

http://www.iflscience.com/health-and-medicine/medical-marijuana-shows-promise-against-autoimmune-diseases

According to this article marihuana could regulate immune response, suppress inflammation and shows…See More
8 hours ago
DHZ replied to DHZ's discussion Deal with jaundice
"Dear Jtb,   It's never about data itself. It's always the interpretation of…"
21 hours ago

Moderator
Stephen replied to Matt's discussion Is this right doctor?
"Hi Super Chevy, I like what your GI told you. I have found that Doctors can be so rigid that if…"
yesterday
Super Chevy replied to Matt's discussion Is this right doctor?
"That is a great question, yesterday got back from my GI that I do have a tough time talking…"
yesterday
Ruby replied to Jules's discussion LFTs, how high can they get?
"Hi Jules Glad you posted. I remember the long nights before the transplant. As I mentioned in other…"
yesterday
Ruby replied to Jules's discussion Applying for CPP long term disability in Canada due to PSC
"Hi Jules Check out http://caretohope.ca/resources/canada Also about Ontario and other…"
yesterday

Top Content 

1 Meds for itching

Meds for itching

Posted by Chantal on April 12, 2015

2 How do you cope with PSC?

How do you cope with PSC?

Posted by MarleneH on April 19, 2015

3 Vancomycin w/stage 3

Vancomycin w/stage 3

Posted by LillyAnne on April 14, 2015

4 Deal with jaundice

Deal with jaundice

Posted by DHZ on April 22, 2015

5 Applying for CPP long term disability in Canada due to PSC

Applying for CPP long term disability in Canada due to PSC

Posted by Jules on April 24, 2015

6 Intense crwmping

Intense crwmping

Posted by nickbates22 on April 20, 2015

7 Is this right doctor?

Is this right doctor?

Posted by Matt on April 22, 2015

8 LFTs, how high can they get?

LFTs, how high can they get?

Posted by Jules on April 24, 2015

9 Travel Insurance?

Travel Insurance?

Posted by TD on April 19, 2015

10 Ursodiol issue

Ursodiol issue

Added by GmaTD53 on April 15, 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

Ursodiol issue

Posted by GmaTD53 on April 15, 2015 at 1:23pm 2 Comments

My husband was diagnosed with PSC in 1997. He was monitored with regular labs, Ultrasounds, & eventual MRI's and was very stable until August of 2014. He was on Ursodiol from about 2000 & the dose was higher than he's on now, which is 300 mg… Continue

Interesting (and alarming) update for those on Ursodiol!

Posted by Semperfidelis1964 on April 14, 2015 at 2:50pm 24 Comments

I'm not sure how many others are on Ursodiol, but I got some rather alarming news from my GI Doctor today.

I'm in the early stages of PSC (after having had Ulcerative Colitis for close to 25 years).  One of the drugs I was…

Continue

Events

About

Ben created this Ning Network.

Gift Store

© 2015   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service