Re: 23/M/Arizona Diagnosed Yesterday

October 5, 2000

,

We have a few people in your age bracket sorry to say, I am about twice your

age and hate to see you young people diagnosed with this. our

moderator is just 21 and we have a few teens and even some children in the

group. We have every age you can imagine. Some have been diagnosed without

symptoms through routine blood testing and other like my husband Phil was

diagnosed after being quite sick and probably has had the disease a good 10

years. Fatigue seems to be the most common symptom. Give the Actigall a

chance because many of the members have found the Actigall (especially in

higher doses) to keep the bile flowing and keeping them infection free.

There are a lot of very knowledgeable people that will answer the rest of

your questions and don't be afraid to ask that's what we're here for. Take

care.

Peg, wife of Phil (57), UC 30 years, dx PSC 12/98, listed-status

3-UCLA-2/2000, living Los Angeles suburbs, CA

October 6, 2000

Hi

Welcome to our group where you will find answers and support and in time you

will be doing the same for others....

I am a mom here with a son who is 18 who has PSC.....I have been on the list

for almost 2 yrs now...He was first diagnosed with Crohns when he was 9...and

has some other auto-immune diseases....Hes a senior in HS and looking forward

to going to college next yr...

Let me see if I can answer some of your questions..

BEING TIRED...when you get a chance to hear form others here also you will

find that there are alot who are pretty much symptom free....but being tired

is something everyone here seem to share....some have trouble sleeping at

night...even though they are tired....Tyler (my son) usually comes home from

school and takes a nap...abou 2 hours...so he can make it thru the rest of

the day....The more active he is the better he do

es....He worked all summer at a Six Flags park....and really did well....but

school seems to do him in....maybe the lack of being able to move around

much....not sure...

As you will see the age of being diagnosed is very wide...most are older but

there are plenty(no many) that are in their 20's and teens and there are a

couple of children...Ty was diagnosed at 15yr while after months of lab work

for other things his liver counts kept getting higher and higher...then he

had a CT, liver biopsy and then and ERCP....he also has AIH which is

Auto-immune Hepititis...These are all caused by our immune system seeing us

as the alien....so it tends to go after it....

Prognosis curve....like many diseases it seems to effect everyone

different....some have had it for years and are still pretty much symptom

free...and others who seems to need more care early on....

ITCHING...some people seem to have itching everywhere...Ty has it usually on

the palms of his hands and botom of his feet....as if you had poison

ivy...can't get relief...although I have seen him itching everywhere but that

doesn't seem to bother him like the hands and feet.

The 10 yrs is like a base line that is given to many....but like I have

already said...there are many here who have had PSC for many years and may

never need a transplant...

Actigal is what most take here and also Urso...which is basically the

same...In fact Ty was started on Actigal and then switched to Urso.....

Tyler has trouble with eating at times...it is VERY IMPORTANT that you eat

well and drink plenty of water....everything goes thru the liver so you want

to hydrate yourself well....Ty drinks water all day...You should try to pick

some small but healthy snacks to eat for the meals you have trouble

with....especially if you are on you own and have no one to cook for you....I

can still be in charge of Tys meals and do the best I can to keep

calories....good ones ...in him...Breakfast is his favorite...but there are

times he doesn't feel well enough to put too much in....that is when he will

grab a fruit bar etc...not too heavy but has some nutrition....plus you need

food in your belly before you put your meds in....so it is something you

really need to work on....OK I'll stop being the " mom " here...

The fact that you haven't lost any weigh is good....but keep in mind that if

you start to not feel well you will lose...so it is important to watch your

weight....Ty has in the past had to add ENSURE..not just for old people....to

keep from dropping too much weight....

Well ...Thats was my 10 words or less....LOL

Tell us about your self....In school or out...etc....I hope we will talk

soon...even though I am not your age....Tyler does not get on here...but I do

talk to him about the people and what is going on....Right now he knows that

I will do all the work and he can be the TEEN.....and do NOTHING..LOL

Take care of yourself...

Luanne Ty's mom

October 6, 2000

>I'm that newbie now. I've got lots of questions. [i'd love for

>someone my age [OR NOT] to email me @ admin@... but here

>come the questions...]

Hi ,

(cc: to bigfoot and existenze)

Welcome to the group..

sorry you need to be here..

you didn't say how old you are..

slow down a little..

I know it is VERY VERY scary right now..

that is pretty normal..

there is a lot of REALLY scary info on the web..

but, I know some GOOD words about PSC...they are down at the bottom of the

page which is a one page summary of my wife situation..

it is at http://home1.inet.tele.dk/ordsmed/MetteSum.html

go there read starting at " my wanderings around the web are uncovering more "

and follow the links to the [source] of the GOOD places..

you will have plenty of chance to be scared again as you hear stories here..

your specific questions I'll leave to those more qualifed to answer them..

for now know that you are among friends, instantly..

we are here to help you..

you will get your chance to help sooth a newbie..

it will come soon..

I've been here three months, only..

welcome again, while you are resting and can't sleep, can your mind work?

think about how we can help you, and what we can do together to lick this PSC

thing..

figure out my sig and make one of your own, it helps all of us:

DenverD: husband of Mette (44), UC '73, dx PSC 6/2000

alive in Denmark <www.Texan.dk> Email: OrdSmed@...

October 6, 2000

OK its mom again...

His liver biopsy is what was done first....they suspected PSC and AIH but the

ERCP was done to confirm...and it did...

Ty was getting weekly labs done for quite a while and it was there that the

first sign that there was a liver problem....then a CT done to locate the

liver position and then right upstairs to get the biopsy....2 weeks later for

the ERCP...They usually give the liver a rest inbetween to heal itself from

the biopsy...

Tyler started with Actigal 2 yrs ago and I don't remember the exact

dose...but he was switched to Urso...supposed to be the same thing...there

was something about a shortage of Actigal...so a lot here were switched...His

dose now is 250 3x's a day...Ty also takes alot of other meds...

He has been on Remicade infusions...for his Crohns and RA for the last 10

months ...and sees his docs then..so every month...but in Aug he had a very

bad reaction to the infusion and can not get it any longer....so they are

working on a new treatment...We see his RA doc on tues...so we will find out

then...he saw his GI last tues and had a CT...Ty's test vary because of some

of his other problems...But the most given thing is for labs....and that

varies...usually once a month. Others have it every 3 months....or 6

months...depending on how they are doing....

I am glad that you are finding so much help here....

Please keep in touch...

Luanne Ty's mom....

October 6, 2000

,

How old are you? I'm the mom of an 18yr.old son recently diagnosed with UC and

PSC pretty much at the same time last spring. Welcome.

October 6, 2000

wrote:

> I'm that newbie now. I've got lots of questions. [i'd love for

> someone my age [OR NOT] to email me @ admin@... but here

> come the questions...]

Welcome to the group! I'm not exactly your age, but I was when I was

diagnosed (actually I was 22... 30 now) so I know where you're coming

from.

> I've got no real symptoms but I suppose

> that's somewhat normal. I am tired... a LOT.. I don't really want to

> sleep, just close my eyes and lay there.. it usually starts at about

> 10am and lasts the rest of the day.. then I take like a 20 min nap in

> the late afternoon and it about kills me to wake up... I feel

> terrible for like a half and hour... Are there drugs to help with

> fatigue?

The only one that I've heard specifically is caffiene :-) I try to

avoid that, cause I don't think it's really good for me, but sometimes I

break down and drink a coke or something when I'm really tired and need

to be awake.

> I understand the median age of diagnosis is like in your 30s to 40s

> but does that mean you develop it at that age or that it's just

> diagnosed at that age?

Good question. I think that since it develops slowly, it's generally

diagnosed after it's already been there for a while, but there is quite

a range of Dx ages in this group... little kids up to... (I'm not sure

what the oldest dx here is!)

>

> Is there like a 'prognosis' curve or something that you [the patient]

> can be applied to to help chart the course PSC is going to take?

There are formulas for predicting survival... I put one up on my web

page at:

www.mindspring.com/~thegeorges/mayopsc.html

Just keep in mind that it's only a prediction... I have no idea what it

would give for you, but when I was first diagnosed it would have

predicted a four year survival of 64%... now eight years later it's

predicting a four year survival of 77% so it's definitely not foolproof!

> I forget what it's called, but the itching.. as a symptom. Is that

> localized? Or is it all over?

It's called pruritis, but we usually just say itching :-) With me it

usually isn't all over at the same time, but can appear at different

places. When it got really bad, it was the itching in my hands and feet

that really drove me crazy. Luckily I haven't had too much problem with

it since I had my gallbladder out.

> Does this symptom and related ones

> come and go or over time does everything gradually get worse?

Things do come and go. Like I said, the itching was worst for me about

the time I was diagnosed, then it took a vacation for about 8 years, and

recently it's been coming back some.

> In the research I've done, I understand that 10 years is the average

> from diagnosis to liver failure.. Is that accurate?

Yes, but the time for a given person can vary quite a bit from that. A

lot of the variation comes from the variation in where in the course of

the disease it gets diagnosed. If you get diagnosed due to

abnormalities on a routine test, before any symptoms develop, it's

likely to be longer than if you are diagnosed due to symptoms.

That said, I went in due to symptoms, and my hepatologist thinks I'll

need a transplant within the next four years or so. If he's right that

would be 13 years from diagnosis to Transplant.

> I know I'm spouting off and these answers aren't easily summed up in

> 10 words or less... But any help would be appreciated.

Keep asking questions, and learning! We're all in this together, and

although we wish you didn't have to go through this, we're glad you

found us!

athan

October 6, 2000

Excellent. This is exactlly what I was looking for.

At what point since diangosis were you referred to a hepatologist?

My GI has treated people with PSC in the past.. [3 to be exact... 1

had tx two moved or something] and I'm comfortable with him [except I

hate his office staff] but what would a hepatologist afford me.. or

what has it afforded YOU?

Do you have UC? I had a colonoscopy two days ago.. Some blood work

showed I had an 88% chance of having it [12% of having Crohns] but

the Doc says no signs. Is UC something that can develop or does no

mean no?

October 6, 2000

Man oh MAN.. be a 'Mom' all you want.. This stuff is great.

Did his ERCP diangosis both PSC and AIH? Or rather, how was EACH

diagnosed?

What's your sons dose of Actigall? How often does he see his GI?

What are the routine procedures he gets done every so often?

More [no doubt] to follow!

October 6, 2000

: I was surprised that my GI doctor was also a hepatologist, since he

was only listed as a Gastroenterologist. Ask your doctor, and maybe yours

is a Hepatologist also. I don't know what kind of insurance you have, but

if you need to change doctors, maybe they can recommend one for you and give

you the details on billing. Sue in Florida.

Re: 23/M/Arizona Diagnosed Yesterday

> Excellent. This is exactlly what I was looking for.

>

> At what point since diangosis were you referred to a hepatologist?

> My GI has treated people with PSC in the past.. [3 to be exact... 1

> had tx two moved or something] and I'm comfortable with him [except I

> hate his office staff] but what would a hepatologist afford me.. or

> what has it afforded YOU?

>

> Do you have UC? I had a colonoscopy two days ago.. Some blood work

> showed I had an 88% chance of having it [12% of having Crohns] but

> the Doc says no signs. Is UC something that can develop or does no

> mean no?

>

_____NetZero Free Internet Access and Email______

http://www.netzero.net/download/index.html

October 6, 2000

I'm 23.. but I've probably had PSC since about 18 or so... I donated

whole blood at that age and got results back from United Blood

Services saying I had Hep C... So I followed up with a Doc and he

pretty much ignored it untill I recenly asked for another liver

profile and my PCP finally persued the abnormalities.

October 6, 2000

[There are formulas for predicting survival... I put one up on my

web page at:

www.mindspring.com/~thegeorges/mayopsc.html]

::::::::::::::

Where'd you find the formulas and do you have any others?

I plugged in my stuff and GOOD NEWS! I've got a 99% chance of living

beyond 4 years!

Seriously though. What's the scoup?

October 6, 2000

bbnlu@... wrote:

>.Tyler (my son) usually comes home from

> school and takes a nap...abou 2 hours...so he can make it thru the rest of

> the day....The more active he is the better he do

> es....He worked all summer at a Six Flags park....and really did well....but

> school seems to do him in....maybe the lack of being able to move around

> much....not sure...

You know I've noticed this too. I'm usually less tired after a day of

working around the house (mowing lawns etc.) than I am after a day at

the office, sitting at my desk. The problem is, it's hard for me to get

any real exercise, because I'm always so tired when I get home from

work!

athan

October 6, 2000

wrote:

>

> Excellent. This is exactlly what I was looking for.

>

> At what point since diangosis were you referred to a hepatologist?

(not sure if this was addressed to me or not, but I'll answer anyway :-)

When I was first diagnosed, I went to a hepatologist (at Duke

University) a few months later, and had the dx confirmed via a second

ERCP. I saw him a couple more times, then moved and didn't see one

again until last year. A biopsy showed my disease was progressing, so

my GI doc. referred me. Now I see both... the GI doc. is a lot closer,

so I still see him to keep an eye on my liver and varices etc, and to

watch my UC. The hepatologist is monitoring me for placement on the

transplant list, but so far my liver is too healthy (which is mostly a

good thing... I'd like to be able to get on the list so I can be more

likely to get a transplant, but I won't complain too much about my liver

doing well!)

> My GI has treated people with PSC in the past.. [3 to be exact... 1

> had tx two moved or something] and I'm comfortable with him [except I

> hate his office staff] but what would a hepatologist afford me.. or

> what has it afforded YOU?

Basically a hepatologist will be able to tell you a bit more about what

stage of the disease you are at. If you have any serious complications

it's nice to have someone who's familiar with your case, and who you're

comfortable with before hand, rather than trying to deal with a new

doctor (who you may not like) and health problems too. I was lucky in

that I went to see my new hep. doc. for the first time a few months

before I started developing complications, and he's great!

Basically my advice would be to see a hep. now, and then, based on what

stage your disease is etc. he may just let the GI monitor you and refer

you back if he sees any problems developing.

>

> Do you have UC? I had a colonoscopy two days ago.. Some blood work

> showed I had an 88% chance of having it [12% of having Crohns] but

> the Doc says no signs. Is UC something that can develop or does no

> mean no?

I was scoped when I first had the PSC dx and came up negative. Then

started to develop symptoms this last year (constipation) and was scoped

again a few months ago, and was positive for UC this time. So guess the

answer to your question is that it can develop. So far I haven't had

really bad symptoms, and the Pentasa I've been on has pretty much

cleared up what I did have.

Hope this helps!

athan

October 6, 2000