Small duct PSC?

[Guest guest]

Have any of you been diagnosed with small duct PSC? My husband Fred

believes that is what he has. However, his hepatologist appears to

make no distinction between small duct and regular PSC, if small duct

PSC is indeed the correct diagnosis.

Neither his recent liver biopsy, MRI, or catscan showed damage,

inflammation to large portal ducts. But wouldn't the course of

regular PSC progress from small bile duct damage to large? (Mayo

Clinic said Fred as stage 2, his liver doc here says 1/2.) Or did/do

most of you show damage to both large and small ducts, early in your

diagnosis? In other words, the PSC was everywhere, even in mild form?

BTW, in 1995 when his gallbladder was removed, a liver biopsy was

done and " mild inflammation " was noted, nothing else. Doctors weren't

concerned and no further testing was done.

And when does PSC officially " begin? " Am also interested to know if

any of you could actually pinpoint the " trigger " that set off this

disease? I know that viruses, bacteria can set off the chain of

events for PSC. In my husband's case, I believe a two month bout with

diahrrea in 1994 may have been the catalyst, as LFTs became elevated

in 1995. Just a hunch.

Thanks for enlightening me/us!

Husband Fred, PSC 3/14/04.

[Guest guest]

,

I have both small and large duct PSC and have since I was diagnosed,

so I can't offer you much information on one progressing to the

other. I will say that at first my disease moved very slowly but has

picked up in the last few years.

I recall my trigger. I had a virus - nasty sinus infection on my 21st

birthday. I still remember that day - and how much of it I don't

remember. I don't think I'd ever been that sick before. I thought it

was just a head cold - bad one, but I recall that that fall, I had

something wrong almost the whole semester and was taking quite a lot

of over the counter nose stuff. In retrospect, I think it was a much

stronger virus than I gave it credit for being at the time. That same

spring, I had my first bought of bacterial cholangitis (fever,

chills, pain in my upper right quadrant) only I didn't have a clue

what it was. I thought I had the flu or something. From then on, I

was symptomatic with infrequent boughts of cholangitis. My LFT's

showed mild elevation in '95 and a doctor told me to disregard them

(they were still in the normal range). By late 1995 when I sought

treatment, they were very much abnormal. It still took a full three

years for me to get a confirmed diagnosis.

I hope this helps a little. This disease is a tricky one. I get

frustrated at its sometimes infuriating symptoms and irratic

progression. You're doing well to educate yourself and your husband.

I find that even with the best of doctors, our own research tends to

point us toward the best of care. Take care, Deb

Age 31, AIH 1997, PSC 1998, UC 1999, Listed for LTX 2001

[Guest guest]

,

Liver disease is diagnosed as Small Duct PSC when LFT's, other lab tests, history, and other tests meet the criteria for PSC and all other diagnoses have been excluded, but any damage to the biliary tree is in bile ducts so small they cannot be visualized by X-Ray, MRI, etc.

There is some evidence that SD-PSC progresses more slowly than LD-PSC, but there is also considerable discussion about the likelihood that SD-PSC is in reality only the earliest stage of LD-PSC.

My particular variant of the disease was definitely LD-PSC, as it first manifested in the lower end of the CBD. I was asymptomatic until a bout of itching that was uncontrollable by any means drove me to a dermatologist...and the rest is history.Steve RahnPSC '80 --> L Tx 9/6 & 9/8 '85 (Wash U. - St. Louis)Recurrent PSC '02 -->(re)Born on the 4th of July, 2003(Re-L Tx at U of Iowa)"Solve the problem, not the solution" (Dean Kamen)

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[Guest guest]

> ,

> I have both small and large duct PSC and have since I was

diagnosed,

Hi Deb-

Thanks so much for your info and for what triggered your PSC. Fred

also had a few nasty sinus infections prior to his LFTs going up. He

was also prone to bronchitis.

More questions: Don't all PSC patients, by definition, have small

bile duct disease in addition to any large duct disease that

manifests?

I see you've been on the transplant list for three years! Is that a

longer than average wait?

God bless - you have been through it!!!!

Husband, Fred, PSC, March 14, 2004.

[Guest guest]

Steve-

Thanks for info. Fred's small bile duct damage was only noticeable on

his liver biopsy. Nothing showed up on MRI or catscan. He never had

an ERCP, since PSC was diagnosed from liver biopsy. So at this stage,

I guess he could be said to have small bile duct PSC, correct? I know

there are different theories on this.

Husband, Fred, PSC, March 14, 2004.