Newly back / new introduction

[Guest guest]

Hi, all,

I was an active participant in the group for a brief time several

years back and wanted to get back in to reading and occasionally

posting -- I could use the support. So I've rejoined. Here's

background for anyone interested:

'94 - dx PSC. No symptoms then other than mild itching (I was seeing

an allergist who thought I was hypersensitive to people I was around

who had a lot of cats). Dx after elevated enzymes when I gave blood.

'95 - 2004: ERCPs once every couple years due to transient elevated

bilirubin and occasional dilatation of bile ducts, but no dominant

strictures. Itching fluctuating.

mid to late 2004: Thinking about getting on high dose ursodiol study

so stopped taking urso. No changes to my symptoms or liver functions -

- all were basically normal

Early 2005: labs still great, but started switching medications

aroudn a lot due to gradual increase in itching. Saw my doctor and my

labs were too good to get in to urso study.

March or April 2005: Had just seen doctor but the next weekend had

nausea and jaundice. New labs showed elevated bilirubin. Scheduled

ERCP and MRCP. Neither showed any evidence of dominant strictures or

new narrowings that would explain jaundice. Doctor suggested we

discuss transplant list at next appointment.

April or May 2005: By the time I saw doctor, extremely jaundiced;

uncontrolled itching; sleep reversal; unable to eat; rapid weight

loss; etc. Bilirubin in 20s. Began eval process to get on transplant

list and also started on high dose urso even though not in study.

June 2005: On transplant list. Basically disabled. Bilirubin slightly

better. MELD of 21. Called twice in June, once to put me on notice

but liver went to someone else and once to be a backup for someone

else, but liver was unusable.

June to August 2005: Showed steady improvement in labs and symptoms.

By September 2005, MELD was under 15. Doctor couldn't explain

improvements, but we didn't complain.

2005-2007: Stayed on transplant list despite continued improvement

and return to near normal functioning with minimal to no symptoms

other than intermittent fatigue.

2008: Doctor reports to me outcome study of high dose urso as not

supporting its use but we agree I'll continue as it seems to have

been a help to me. It was the only explanation we could figure.

Also 2008: Dx UC -- minimally active proctitis with quiescent disease

throughout colon. A few benign polyps. No dysplasia. Began mesalamine

orally and with suppositories -- proctitis resolved within a month

and switched to oral asacol only. Intermittent fatigue persists. Rare

itching. alk phosphatase elevated throughout year. INR slowly

increasing. platelets very slowly declining since 07. enzymes pretty

good / minimal elevation.

towards end of 08: fatigue persists -- still mild, but having trouble

maintaining energy at work. Itching absent so I reduced zoloft dose

that was for itching to almost nothing.

early 1/09: albumin slightly low (3.3), alk phos still elevated;

enzymes minimally elevated. platelets around 92K. dx with diabetes

type II. fatigue more frequent (maybe diabetes??). slight probs with

itching - restored my zoloft to previous dose (still low at

50mg/day). Changed diet and got blood sugar under control within a

few days.

late 1/09: itching worse - increased Zoloft to 100mg/day. Resolved

itching after 4 days, but insomnia. ugh.

2/09: Insomnia worsens the start of the month. Started taking lunesta

at start of month which seems to help without making me feel drugged.

Itching seemed okay until a week ago. Has increased steadily;

yesterday and today it has been bad enough to trigger all the

memories of illness in 2005. No jaundice evident, though. On positive

side, I've lost over 20 lbs. with my diabetic diet!

Soooooo... That brings me up-to-date with health. Other info: married

the same year dx (will be 15 years this summer), 3 children, working

too much as a psychologist with an almost full-time private practice

(evaluations and counseling) and more than half time work at a

university teaching personality psychology and training

psychotherapists as well as seeing a few clients at the campus

counseling center. I also lead a small choir at my church.

I'm looking forward to participating some again.

Philip

35, male, married, 3 children, psychologist; PSC-94, osteoporosis 05

improved to osteopenia by 08, UC-08, DMII-09; high-dose urso since

05. Cirrhotic with portal-vein hypertension; trace varices in 07 to

be rechecked 09.