Re: just diagnosed too

[Guest guest]

Not exactly lying, but she really has no way of knowing, nor do we,

nor do you. In some people this disease takes a very slow course- the

average time to transplant runs about 15 years, and can go as long as

30 or even 40. But some people walk into the office needing a

transplant, while others are referred after a routine physical shows

abnormal liver function tests (LFTs). For some people, those years are

nearly symptom-free, but for others they are fraught with difficult

medical problems.

I think you should head for Dr. Chapman's office, you will be in the

best hands there.

Martha (MA)

42, UC 1979, PSC 1992

> Does anyone know what stage I am at if I am itching and have upper

> right pain already? What should I expect? I have had a biopsy which

> I was told was OK, and an MRI to check the ducts. I was told I didnt

> need the ERCP as the MRI told them enough to diagnose me. My doctor

> told me that my liver wasnt going to fail 'in 5 yrs, 10 yrs or 20 yrs

> so just get on with life and dont worry' - but everything I read

> tells me she was lying!!

>

[Guest guest]

Your dr is right and wrong. DO get on with your life. Do not let this disease rule it. She can no more tell you when your liver will fail than I can predict the lottery. This disease gives different symptoms at different times. Listen to your body. As you have probably read there is itching, abd pain, bleeding proble,s, confusion, pleural effusions, ascites etc. You don't know what you will experience. Is your dr a gastroenterologist? Have you seen a hepatologist? You need a good one that you can talk to. The 2 of you are in this for the long haul. Good luck. Come to us with any concerns. Between all of us we have seen , felt, or heard about everything that can happen. Marti (living donor 1 yr ago to son 20 yrs old)curtiskym wrote: HiI have just been diagnosed with PSC, and have no

history of IBD [although I am having a colonoscopy in August to check]. I am a 38 yr old female and live near Oxford in the UK. So far I have been given very little info about this disease - everything I know I have found out for myself on the web - our doctors dont seem to be as helpful as yours! So far I have been given Questran for the itching, which didnt help, so am now taking Rifampicin, 1 per day - but feel I need at least 2 as 1 tablet doesnt see me through a whole day. I have not been prescribed Urso - but I am going to ask about this at my next appt in 4 weeks as it seems that I should be taking it.Does anyone know what stage I am at if I am itching and have upper right pain already? What should I expect? I have had a biopsy which I was told was OK, and an MRI to check the ducts. I was told I didnt need the ERCP as the MRI told them enough to diagnose me. My doctor

told me that my liver wasnt going to fail 'in 5 yrs, 10 yrs or 20 yrs so just get on with life and dont worry' - but everything I read tells me she was lying!! I am still very confused about everything and would appreciate any advice you are willing to give me....Kym x

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Hi Kim I am from oxfordshire too. Is it dr collier you are under she

is just under dr chapman. If You need to talk to her then phone and

ask to speak to her she is very willing to speak to you at anytime or

at least she is to me. As for the urso she doesn't usally give it

unless you are suffering real bad with triedness and having attacks.I

am on 1000mg aday but I have had to stay in hospital because of an

attack and I suffer from extrem triedness and exhustion. I would talk

to your dr and ask if you could try urso and see what she says.

[Guest guest]

Dear Kym ,

I am having problems with my email from the group

at present but picked up the attatched email. I live near Newbury Berkshire have just

hit 40 and been diagnosed with PSC 2 years ago. I am currently enjoying what I

can only describe as a remission period which has lasted 6 months and long may

it continue. I know the consultants locally and have myself seen Dr Chapman at Oxford …..which like I would

strongly recommend. Please feel free to contact me on my private email if you

would like any info or a chat

katealewis@...

Kind Regards to all

Kate

Re: just

diagnosed too

Dear Kym;

I'm sorry that your PSC diagnosis brings you here,

but glad that you

found the group. I'm not sure whether you are

aware of this, but one

of the leading world experts on PSC is Dr.

Chapman, at Oxford

Radcliffe Hospital, Oxford. His publications

include clinical trials

on ursodiol in PSC:

_________________

Gastroenterology. 2001 Oct;121(4):900-7.

A preliminary trial of high-dose ursodeoxycholic

acid in primary

sclerosing cholangitis.

SA, Bansi DS, Hunt N, Von Bergmann K,

Fleming KA, Chapman

RW.

Department of Gastroenterology, Oxford Radcliffe

Hospital, Oxford,

England, UK.

BACKGROUND & AIMS: Ursodeoxycholic acid (UDCA)

is used for the

treatment of cholestatic liver diseases including primary

biliary

cirrhosis (PBC) for which it has a positive effect

on laboratory

values, may delay the development of liver failure

and prolong the

transplant-free disease period. Standard doses of

UDCA (8-15 mg/kg

daily) have been shown to be ineffective in the

treatment of primary

sclerosing cholangitis (PSC). We report on the

findings (clinical,

biochemical, histological, and cholangiographic)

and side effects of

a 2-year double-blind placebo-controlled

preliminary study of high-

dose UDCA in PSC patients. METHODS: Twenty-six

patients with PSC

were randomized to high-dose (20 mg/kg daily) UDCA

or placebo.

Cholangiography and liver biopsy were performed at

entry and after 2

years. Symptoms, clinical signs, and liver

biochemical tests were

recorded at 3 monthly intervals. RESULTS:

High-dose UDCA did not

influence symptoms, but there was a significant

improvement in liver

biochemistry (serum alkaline phosphatase, P =

0.03; gamma-glutamyl

transferase, P = 0.01) and a significant reduction

in progression in

cholangiographic appearances (P = 0.015) and liver

fibrosis as

assessed by disease staging (P = 0.05). In the

treatment group, a

significant increase in total bile acids and

saturation with UDCA

>70% confirmed patient compliance. No significant

side effects were

reported. CONCLUSIONS: High-dose UDCA may be of

clinical benefit in

PSC, but trials with a larger number of

participants and of longer

duration are required to establish whether the

effect of high-dose

UDCA on liver biochemistry, histology, and

cholangiography in

patients with PSC is translated into improved

long-term survival.

Publication Types:

Clinical Trial

Randomized Controlled Trial

PMID: 11606503

___________________

If you havn't done so already, you might also look

at the U.K. PSC

Support web site; you might find some useful local

contacts here:

http://www..demon.co.uk/

When our son was diagnosed with PSC/UC, my wife

and I were also

given very little information, and we set about to

inform ourselves

about every aspect of this disease. Results of our

scientific

literature and www searches are posted here:

http://www.psc-literature.org/

Hopefully, this may save you some time in finding

relevant

information, although there is a great deal to

absorb ... therefore

take it in slowly.

In terms of staging, I think this can only be done

by liver biopsy

and histological examination of the sample(s).

Don't hesitate to

request specific information about staging from

the doctor who took

your biopsy sample.

Let us know if you have any specific questions.

Best regards,

Dave

(father of (20); PSC 07/03; UC 08/03)

[Guest guest]

Hi , didn’t

realize you live so near , have been slack with reading all the postings due to

major computer problems and have 8000 in my inbox. I am on 2500mg of urso a day and for the first time in 2 years feel great . I would be very keen to meet for coffee etc if you

fancied it as the 3 of us are within very close distance. Please feel free to

contact me on my private email

Thanks a lot

]Kate

Re: just

diagnosed too

Hi Kim I am from oxfordshire too. Is it dr collier you

are under she

is just under dr chapman. If You need to talk to

her then phone and

ask to speak to her she is very willing to speak

to you at anytime or

at least she is to me. As for the urso she doesn't

usally give it

unless you are suffering real bad with triedness

and having attacks.I

am on 1000mg aday but I have had to stay in

hospital because of an

attack and I suffer from extrem triedness and exhustion.

I would talk

to your dr and ask if you could try urso and see

what she says.

[Guest guest]

Hi , I am under Dr Collier too, I am seeing her again at the end

of this month so am hoping to get some more information then. I live

in Brackley - would you like to get together as Kate has suggested?

Kym

>

> Hi Kim I am from oxfordshire too. Is it dr collier you are under she

> is just under dr chapman.

[Guest guest]

Hi Marti - thanks so much for responding and for your support.

Congratulations on your donorship to your son - not many mums get to

give the gift of life twice! I am trying to get on with things -

hopefully I will feel a bit better when I have been back to see the

doctor again at the end of this month [she is a hepatologist]. I

will be able to ask more questions then, as I was too shell-shocked

the last time I saw her on diagnosis! I hope both you and your son

continue to flourish.

Regards, Kym

> Hi

> I have just been diagnosed with PSC, and have no history of IBD

> [although I am having a colonoscopy in August to check]. I am a 38

> yr old female and live near Oxford in the UK. So far I have been

> given very little info about this disease - everything I know I

have

> found out for myself on the web - our doctors dont seem to be as

> helpful as yours! So far I have been given Questran for the

itching,

> which didnt help, so am now taking Rifampicin, 1 per day - but feel

I

> need at least 2 as 1 tablet doesnt see me through a whole day. I

have

> not been prescribed Urso - but I am going to ask about this at my

> next appt in 4 weeks as it seems that I should be taking it.

>

> Does anyone know what stage I am at if I am itching and have upper

> right pain already? What should I expect? I have had a biopsy

which

> I was told was OK, and an MRI to check the ducts. I was told I

didnt

> need the ERCP as the MRI told them enough to diagnose me. My doctor

> told me that my liver wasnt going to fail 'in 5 yrs, 10 yrs or 20

yrs

> so just get on with life and dont worry' - but everything I read

> tells me she was lying!! I am still very confused about everything

> and would appreciate any advice you are willing to give me....

> Kym x

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Martha - thanks for responding. I am already under Dr Collier at Dr

Chapman's office. I am going back for a follow-up appt at the end of

the month so will be able to address my questions to her then. I hope

you are well. Regards Kym

>

> Not exactly lying, but she really has no way of knowing, nor do we,

> nor do you. In some people this disease takes a very slow course- the

> average time to transplant runs about 15 years, and can go as long as

> 30 or even 40. But some people walk into the office needing a

> transplant, while others are referred after a routine physical shows

> abnormal liver function tests (LFTs). For some people, those years are

> nearly symptom-free, but for others they are fraught with difficult

> medical problems.

>

> I think you should head for Dr. Chapman's office, you will be in the

> best hands there.

>

> Martha (MA)

> 42, UC 1979, PSC 1992

>

[Guest guest]

>I go back on the 28th this month to see dr collier too. Its a problem

meeting as I don't drive. still love to keep in touch with you though

as I think its important to beable to talk to others locally who have

psc.

[Guest guest]

OK - we will perhaps bump in to one another on 28th - my appt is

10.30!! Perhaps we should both carry the FT or wear a red carnation ha

ha!! Take care x

> >I go back on the 28th this month to see dr collier too. Its a

problem

> meeting as I don't drive. still love to keep in touch with you though

> as I think its important to beable to talk to others locally who have

> psc.

>

[Guest guest]

--- Ha Ha my appointments at 10.45 so we probaly will meet eachother.