Q's for Docs from newly dx persons

[Guest guest]

Hello all,

I hope everyone enjoyed the holiday season. I'm trying to put together a list of questions for newly diagnosed people with PSC to ask their physicians so that they get the best possible care. Please submit questions that you did ask or wish you had asked early on in your path with PSC. Any question is reasonable and all help is appreciated.

These are what I have come up with so far:

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

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?

Should I consume alcohol containing products?

If I experience itching from my liver disease, also known as pruritis, what can I do to gain relief? Is grapefruit juice ok to try?

Is it safe to smoke Marijuana with known liver disease such as PSC ?

Upon average, when does bile duct cancer (cholangiocarcinoma, aka the Klatskin tumor) arise from the time diagnosed with PSC?

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

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

How often do you recommend an ERCP or MRCP?

How often should I have an abdominal ultrasound?

How often should a CA 19-9 level be drawn?

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?

Thank you for your time.

Sincerely,

Ross Heil

PSC & UC 2004