Primary Sclerosing Cholangitis vs Small Duct PSC?

@dannymaggart, How is your son getting along with his recently diagnosed PSC (Primary Sclerosing Cholangitis)?
I want to introduce you to "PSC Partners Seeking a Cure" where you can learn about the all things related to PSC.
- Founded in 2005, PSC Partners Seeking a Cure is a 501(c)(3) nonprofit organization. The various programs give support to patients, caregivers, families, and friends, educate patients and the medical community about primary sclerosing cholangitis (PSC), a rare liver disease, and encourage ground-breaking research in the search for treatments and a cure.
https://pscpartners.org/

I just came across your post this morning. I was diagnosed with small duct PSC through a liver biopsy. I don't know about "early" versus "small duct" but I can tell you that I have been living with small duct PSC for about 40 years. (Now 85) There is a potential for small duct to progress to issues with the main duct, but so far that has not happened. I also had ulcerative colitis and was receiving Remicade treatments once a month to keep my autoimmune system in control and getting a blood work and a colonoscopy every 6 months. 12 years ago, I had to have my colon removed, and shortly after that my liver enzymes levels returned to the normal range. My GI doctor did not have an explanation for the enzyme levels returning to the normal range. Also, I have never had any other PSC symptoms like jaundice and itching. Not sure if this helps but tell your son that having PSC is not the end of the world.

I had 2 back-to-back colon surgeries 4 years ago that resulted in removal of my large colon & an ileostomy w outside stoma bag. I have to empty every hour, & multiple times after I eat, even tho I am taking Creon, Tylenol3w codeine, & Lomotil multiple times a day. I have to get infusions & labs twice a week to get potassium, magnesium & saline I need.Recently my liver enzymes were extremely high, so had tests & was diagnosed w small duct PSC. I was prescribed Ursodiol for this, which has brought them back to normal. Does anyone else take Ursodiol? If so, any side effects? Concerned it says it may cause hair loss.

Hi. @sunshine29. You have been through a lot with the surgery, stoma, medications, labs and infusions.

I moved your post here so you could connect with others discussing PSC/small duct PSC such as @suerte @rosemarya and @dannymaggart.

Wondering how the ursodiol has gone for you so far? I see that you're wondering about potential for hair loss, which I wouldn't want, either. Any side effects you've noticed?

@sunshine29, I also was prescribed to take Ursodiol for my PSC in the past, before my transplant. Ursodiol is also used to treat primary biliary cirrhosis (PBC) and you will see many patients with PBC mentioning that it is prescribed to them. I never experienced hair loss with the ursodiol, and I don't recall seeing any members mention it in their conversations on Connect. What you might see, and what is likely alarming you is the liver patients who refer to hair loss - after transplant when they are taking some of the very strong antirejection medications.

You will find more information about ursodiol in this Mayo Clinic Health Information link to Drugs and Supplements.
https://www.mayoclinic.org/drugs-supplements/ursodiol-oral-route/description/drg-20066618
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Sunshine26, I don't see hairloss listed as a side effect. If you are experiencing hairloss or anyother questionsble side effect, please discuss it with your doctor. it is possible that there is a drug interaction and the doctor will want to know.