Questions for New PSC Patients to Ask

Over the years, new PSC patients have asked the forum what kind of questions should I ask my doctor? I thought I would post a compilation of questions I gleaned from several PSC sites. We invite the group to post any questions I didn’t list and we can come up with a master list that we will make available to visitors to this forum. The list is divided up into two lists. The first one Questions for new patients and the second is Follow up PSC Questions –

PSC Questions for New Patients

Should Ursodiol play a role in my management of PSC? If yes, what dosage?

Should I consume alcohol containing products? How much is OK? (I got this question from another similar list and am leaving it in, however the moderators here on this site for sure would not ever recommend ANY alcohol consumption with liver disease. It’s a disaster waiting to happen.)

If I experience itching from my liver disease, also known as pruritis, what can I do to gain relief? Phototherapy with tanning beds?

Are fish oils an acceptable supplement? If yes, what dosage would you recommend?

How often should I follow up for an office visit?

How many cases of PSC have you managed in the past and currently?

What do you think about getting a second opinion?

At what point would you want me to call regarding symptoms, and for which symptoms would you want me to go straight to an ER?

Can I have my routine labs drawn before my appointments so that we may discuss the results in person?

Are any of my current medications problematic? Supplements?

If I have a headache or musculoskeletal pain what over the counter medications would you recommend? What should I avoid?

PSC Questions for follow up visits

Upon average, when does bile duct cancer (cholangiocarcinoma , aka the Klatskin tumor) arise from the time diagnosed with PSC? Does Ursodiol decrease the incidence of cholangiocarcinoma? What about decreasing the chance of colon cancer?

If bile duct cancer is suspected and brush scrapings are done, will you send the sample to Rochester Mayo for FISH staining?

How often do you recommend an ERCP or MRCP?

How often should I have a colonoscopy?

How often should I have an abdominal ultrasound? How did my gallbladder appear? Any evidence of ascities? Any suspicious lesions?

How often should a CA 19-9 level be drawn? At what level is it a concern? What else effects the CA 19-9 level?

How often should my INR/PT, Albumin, AST, ALT, Alkaline Phosphatase, Total Bilirubin, and Direct Bilirubin be drawn? Are there others?

What is my MELD score?

Can I have a copy of my blood and diagnostic test results?

How frequently should I be checked for fat soluble vitamins (Vit A, E, K, D) levels?

Should I take Fat Soluble vitamin supplements? If yes, what dosages?

How often should a bone density test be done?

What vaccinations are required since I have liver disease?



Thank you so much for sharing this. This is truly so helpful!

This is a wonderful list…it contains everything I have thought of plus some I hadn’t considered. I have printed it and plan to take it with us. thank you so much

One thing to remember annmarie regarding vaccinations. If and when your daughter gets on the transplant list a few vaccinations you will need her to get are as follows.

  • Hepatitis A & B - These are available in a one shot deal and I believe there are 2 maybe three different times she will need them.
  • Shingles Vaccine - Once you get a transplant no live vaccines can be given due to the immune system being suppressed.
  • Pneumonia Vaccine
  • Pneumonia Booster vaccine
  • Flu shot every year for sure, but no live flu shots such as the nasal mist spray.

These are just some additional things to keep in mind. I’m sure her doctors will order these but something to not forget.