Updated List of Q's for Doc's

[Guest guest]

Okay, I appreciate all those who responded and I have added your suggestions accordingly. Please review the revised list again and add any more questions and give any suggestions. Thanks again!

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?

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? Phototherapy with tanning beds?

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

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 forwhich symptoms would you want me to go straight to an ER?

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

Are any of my current medications problematic?

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 specious lesions?

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

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

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?

Subject: Re: Q's for Docs from newly dx personsTo: Date: Wednesday, January 7, 2009, 10:07 AM

Ross,Great List. I wish I had had a list like this when i was DX. An idea for a secondary List would be one for when you begin the TX evaluation as I am. I will use this list during the process.Thanks again,Jeff>> 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> > >