MEDICATIONS

Comment

Comment by Susie on November 16, 2011 at 12:48pm

I was diagnosed in 2002.  I have no symptoms, but at the time of diagnosis, I had just finished chemo for a tumor in the j-pouch.  The chemo wasn't filtering through the liver and they didn't know why.  I had severe pain right in the middle of my stomach.  When they ran tests ( ERCP) they put a stent in one of the bile ducts and said I had PSC.

I've been put on different dosages of the Urso.  After the last visit, the Dr. increased the dosage and said that it was unusual for me to not have symptoms and wanted to know if I would be in a study.  I agreed and filled out a huge questionaire and they took 10 viles of blood.  This is at Indiana University Hospital and the questionaire was shared with Mayo Clinic. 

I didn't realize my med was increased until I looked at the script.  He never discussed.  When I called to verify if that was correct, the nurse said yes, the Doc wants you to be on that amount.  I hope this is understandable.  What I have come to realize is that everyone is different in this disease.  I wish you the best and hope you have no symptoms like me.

Comment by Fountainman on November 16, 2011 at 2:06am

I've only been diagnosed with PSC for four months.  I'm not on any prescribed meds. Just diet, exercise, and supplements.  My review of research literature indicated that ursodiol was not shown to improve symptoms.  I hope it is working for you.  What did your doctor tell you to expect?

Comment by Susie on November 16, 2011 at 12:37am

I'm wondering what meds others are taking.  I'm on 2000 mg. of ursodiol a day.  I checked with my Doc again to make sure the prescription was correct.

Thanks, Susie