Not quite diagnosed – a few questions

[Guest guest]

I probably should be grateful for not yet being diagnosed with PSC,

however this is no comfort as it suspected and I am a male, nearly

forty with UC (pan colitis) and fluctuating/abnormal ALP/GGT. I

would say I might be a textbook case but from reading the posts,

there seems to be such a wide range of victims, particularly young

ones, that the range must be so dispersed.

I think I am in that phase, which I have read many times in this

group where it can take up to ten years or more before finally being

diagnosed by evidence from ERCP/MRCP or biopsy.

I read with interest the long debate regarding the outcome of PSC in

isolation, but I am interested if any experienced members would

suggest if, when the whole medical " picture " is considered, does this

place more weight to the outcome? For example, the PSC sufferers

seems to present in many different ways:

a. PSC first / then UC

b. UC First / then PSC

c. PSC first / then Crohns

d. Crohns first / then PSC

e. PSC only

f. You get the picture ..

I guess a. and b. together represent about 70% of the total. Are the

statistics of CCA and requirement for liver transplant the same for

each? Are they the same because it is the intensity rather than the

term of inflammation? Does PSC first make any difference to the

likelihood of CCA? Are any of the above categories more or less

likely to require transplant?

I read on the CCFA website that the side effects of UC are

Steatosis/Fatty Liver (common) and PSC (Rare). Do any PSC'er's have

fatty liver & PSc or is it an " Either/Or " condition?

Someone posted a study by Broome and others regarding PSC-UC as a

unique condition. The study seemed to suggest that PSC is usually

quiescent when UC diagnosed first. PSC first, usually presents with

Jaundice and itching. It also seemed to suggest that those with UC

first seemed to only have mild pan colitis. Did many read this and

did it seem to describe your diagnosis?

Sorry to have gone on . Would be interested if anyone has any view on

these questions.

Thanks,

[Guest guest]

>

> I probably should be grateful for not yet being diagnosed with PSC,

> however this is no comfort as it suspected and I am a male, nearly

> forty with UC (pan colitis) and fluctuating/abnormal ALP/GGT. I

> would say I might be a textbook case but from reading the posts,

> there seems to be such a wide range of victims, particularly young

> ones, that the range must be so dispersed....

>

> Sorry to have gone on . Would be interested if anyone has any view

on these questions.

> Thanks,

>

>

- I'm sure others will have thoughts on your questions. Just

wanted to let you know that weekends are usually quiet on the postings

and " holidays " - does Mother's Day qualify???? (I worked, but that's

nothing new!)..... holidays are even quieter!

Joanne

(, Ca., mom of , 16, UC/PSC (diagnosed at same time, but labs

indicating elevated LFT's for 7 years that we know of, prior to

diagnosis.... and symptoms for about 6 years before diagnosis; JRA

1998)

[Guest guest]

Joanne,

Thanks for letting me know. Hope you enjoyed mothers day, well,

after work anyway.

I only pick up mails a couple of times a week so I am not in any

hurry. Feels therapeutic just to discuss symptoms with people that

understand and hear how others have dealt with this.

Best regards,

kevin

> > > > > > >

- I'm sure others will have thoughts on your questions. Just

wanted to let you know that weekends are usually quiet on the

postings

and " holidays " - does Mother's Day qualify???? (I worked, but that's

nothing new!)..... holidays are even quieter!

Joanne

(, Ca., mom of , 16, UC/PSC (diagnosed at same time, but

labs

indicating elevated LFT's for 7 years that we know of, prior to

diagnosis.... and symptoms for about 6 years before diagnosis; JRA

1998)