Diagnosed in 1991, but still in denial

December 2, 2008

In 1991, I itched for two weeks before consulting a doctor. In four

more weeks, several blood tests later, and with the help of the Mayo

Clinic, they decided I had sclerosing cholangitis. They never called

it " primary. " I took Questran for the itching and Actigall. I was

on the Actigall for 8 1/2 years with great success, except for the

arthritis pain. In 1999, I put myself on an all-natural diet (it was

my version of the anti-candida diet) and, six weeks later, I stopped

taking antihistamines and the Actigall with no further problems until

about a year ago. For about a year, my liver enzymes have started

going up. My doctors have been watching it and wanted me to go back

on Actigall. I've been resisting. This summer, I woke up one

morning with bone-rattling chills and fever with no appetite and that

went on for six weeks, on and off, and was never diagnosed. My PCP

referred me to a gastroenterologist and, since my fevers stopped on

their own, I decided to get that colonoscopy they've been wanting me

to get for a few years. Those results were upsetting: mild colitis,

diverticulosis, and mild gastritis. They said Crohn's could not be

ruled out. More recently, I started itching after everything I ate

and finally went to see an allergist. After over 150 scratch skin

tests, I found out I'm allergic to many foods and everything on the

list of inhalable allergens. I'm getting the allergy shots and, most

recently, just went back on the Actigall following my latest elevated

liver function test. What bothers me is that the liver biopsy in

1991 was " nondiagnostic " and the Mayo Clinic stated that " it could be

sclerosing cholangitis or a drug reaction. " The other option was

never pursued. I still wonder if I have it or not. Is it possible

for me to have this disease and not take any medication for 8 1/2

years and then for it just to show up again? A doctor told me that

it does not just go away. Can liver enzymes get elevated from bad

allergies? Or are the allergies caused by liver problems? This is

long, I know, but I need to talk to someone who might know. I don't

want to be labeled with a disease that I don't have, either! So,

what do you think? Sincerely,

December 3, 2008

Dear ,

I'm sorry about your recent setbacks and the stress of the uncertain diagnosis you're living with. Was an ERCP performed? Often times, the scarring in the duct will make a PSC diagnosis conclusive. If you did not undergo one, you may suggest this to your doctor.

Now, in answer to your question, regarding whether it' possible to have this disease and not take medication for 8 1/2 years...," the answer is undeniably, yes. It is true that PSC does not "go away", but it can progress at different rates at different times. I was diagnosed with PSC in 1984 and was told I had 3-5 years to live without a tx. I just received my new liver in Jan. of this year. During those 24 years (and three years before diagnosis, which included bouts of jaundice) I was hospitalized several times for infections, but lived a rather normal life. I, too, was on a candida free diet for two years and things went even better.

I believe it was 1999-2000, that I was put on Actigall (Urso), and in 2002, following an ERCP my endoscopist came into my post op room, clearly upset and threw his hands up in the air saying repeatedly, "I don't know what happened..." Between the times of my ERCPs in 2001 and 2002 the disease took off! He sent me to see a tx at that time, so they'd keep a close eye on me and list me as soon as it was time. I was listed in 2005 and the rest, as they say, is history.

I would suggest that you schedule an appointment with your doc for a consult. Ask questions, especially regarding an ERCP and definitive diagnosis. The itching, fever and chills are symptoms of PSC, but a conclusive diagnosis is necessary for you to be able to move in the right direction.

The best to you and keep posting. I was a very active group member for several years, but have spent less time here the past two years and I have always considered this group a great source of information and heartfelt support.

(MO)

PSC & UC diagnosed 1984, chronic pancreatitis 1997, plethera of other medical inconveniences, but liver replaced on 1/7/08

Diagnosed in 1991, but still in denial

In 1991, I itched for two weeks before consulting a doctor. In four

more weeks, several blood tests later, and with the help of the Mayo

Clinic, they decided I had sclerosing cholangitis. They never called

it "primary." I took Questran for the itching and Actigall. I was