Re: reply to Von. Indolent disease.

[Guest guest]

Hello Von,

I'm the "kind gentleman" who referred to PSC as a typically "indolent disease." I wasn't just giving my opinion here. The expression comes from Prof. , one of our most distinuished British hepatologists who has over 40 years of clinical practise treating PSC and other liver diseases. And also Dr. Chapman our pre-eminent PSC specialist here in the UK. who has been researching PSC for over 30 years. I regret to say that I would rather rely on their experience than on yours. I hope you weren't sleeping when I made the point that some of us wouldn't recognise this description of our PSC because we have had a far more rapid progression and a great deal of pain and suffering and that we recognise that there is huge variabity in the presentation of symptoms. Dr. Vierling, in his presentation, explained very clearly why this is so. You must not base your understanding of PSC on your experience alone or even on more members of a support group. Members may not be typical of PSC sufferers in general. We have to remember that most people with PSC don't join a support group. There are many possible reasons for this one of which may be that they're not having much trouble and it may be years before they "hit the wall", if at all.

As we know there are others who have an extremely rough time and may need a Ltx soon after their diagnosis. But in the UK 80% of us will not need a Ltx.

Ivor Sweigler

(Chairman, PSC-Support, UK)

[Guest guest]

Ivor,

I wonder where those numbers in the UK come from. I

read some studies lately (Germany,

Finland, Holland) and they give totally different

numbers than what you are saying here. These studies state that the median time

from Dx to either death or Tx is between 9-17 years. This does not at all

correlate with an 80% survival rate without Tx even. Is there a study you can

refer to that shows these numbers? I would like to compare and see where the

differences are.

Maybe I should move to the UK. ;-)

Regards,

Chaim Boermeester, Israel

From: [mailto: ] On Behalf Of pscsupport@...

Sent: Monday, April 30, 2007 05:41

To:

Subject: Re: reply

to Von. " Indolent disease. "

Hello Von,

I'm the " kind gentleman " who

referred to PSC as a typically " indolent disease. " I

wasn't just giving my opinion here. The expression comes from Prof.

, one of our most distinuished British hepatologists who has

over 40 years of clinical practise treating PSC and other liver diseases. And

also Dr. Chapman our pre-eminent PSC specialist here in the UK. who has

been researching PSC for over 30 years. I regret to say that I would

rather rely on their experience than on yours. I hope you weren't sleeping when

I made the point that some of us wouldn't recognise this description of our PSC

because we have had a far more rapid progression and a great deal of pain and

suffering and that we recognise that there is huge variabity in the

presentation of symptoms. Dr. Vierling, in his presentation, explained

very clearly why this is so. You must not base your understanding of PSC on

your experience alone or even on more members of a support group. Members may

not be typical of PSC sufferers in general. We have to remember that most

people with PSC don't join a support group. There are many possible reasons for

this one of which may be that they're not having much trouble and it may be

years before they " hit the wall " , if at all.

As we know there are others who have an

extremely rough time and may need a Ltx soon after their diagnosis. But in the UK 80% of us

will not need a Ltx.

Ivor Sweigler

(Chairman, PSC-Support, UK)

[Guest guest]

Ivor,

I wonder where those numbers in the UK come from. I

read some studies lately (Germany,

Finland, Holland) and they give totally different

numbers than what you are saying here. These studies state that the median time

from Dx to either death or Tx is between 9-17 years. This does not at all

correlate with an 80% survival rate without Tx even. Is there a study you can

refer to that shows these numbers? I would like to compare and see where the

differences are.

Maybe I should move to the UK. ;-)

Regards,

Chaim Boermeester, Israel

From: [mailto: ] On Behalf Of pscsupport@...

Sent: Monday, April 30, 2007 05:41

To:

Subject: Re: reply

to Von. " Indolent disease. "

Hello Von,

I'm the " kind gentleman " who

referred to PSC as a typically " indolent disease. " I

wasn't just giving my opinion here. The expression comes from Prof.

, one of our most distinuished British hepatologists who has

over 40 years of clinical practise treating PSC and other liver diseases. And

also Dr. Chapman our pre-eminent PSC specialist here in the UK. who has

been researching PSC for over 30 years. I regret to say that I would

rather rely on their experience than on yours. I hope you weren't sleeping when

I made the point that some of us wouldn't recognise this description of our PSC

because we have had a far more rapid progression and a great deal of pain and

suffering and that we recognise that there is huge variabity in the

presentation of symptoms. Dr. Vierling, in his presentation, explained

very clearly why this is so. You must not base your understanding of PSC on

your experience alone or even on more members of a support group. Members may

not be typical of PSC sufferers in general. We have to remember that most

people with PSC don't join a support group. There are many possible reasons for

this one of which may be that they're not having much trouble and it may be

years before they " hit the wall " , if at all.

As we know there are others who have an

extremely rough time and may need a Ltx soon after their diagnosis. But in the UK 80% of us

will not need a Ltx.

Ivor Sweigler

(Chairman, PSC-Support, UK)

[Guest guest]

jumputah wrote:

>

> To me an indolent disease is something like warts or wrinkles, or

> insomnia or fibromyalgia which don't progress to disability or

> death.

Well, let me add another dog to this fight. Fibromyalgia is NOT

indolent, either, in any way, shape or form. It is a condition wherein

many of the sufferers deal with constant, and unrelenting pain and

stiffness, among other symptoms.

How dare you compare it to warts or wrinkles, which are purely cosmetic

issues???? Or even insomnia? With HE, I'd give most anything to go

to sleep at a decent hour and actually feel rested in the morning

instead of more and more tired.

As one who has had fibromyalgia for some 25 years, I can tell you that

you're waaaaaaaay off base with this one. It has contributed far more

to my disabled state than my PSC or Crohns has (and that's going some,

let me tell ya!). Thanks to the IBD, I cannot take any pain meds

without setting off a flare. My rheumatologist said it was the worst

case she had encountered. It's a heck of a lot of pain to deal with and

it never stops. Indolent? NIMHO!!!

Can we please end the senseless bickering and sniping over whose dr. is

more authoritative? I'm getting plain sick of all the fussing and

fighting of late. I'd like to hear some of the information from the

conference. (By information, I mean the real stuff .... not quarreling

over the use of adjectives.)

Carolyn B. in SC

[Guest guest]

You know I was kind of hoping this particular argument would be over by

the time I got back here post transplant! I don't really see that it's

getting anywhere, or that it's helping this group to do it's job of

supporting people with PSC (whether they need a transplant or not!) so

perhaps we could just move on to other subjects for now?

Thanks,

athan

[Guest guest]

You're right. I've got to quit posting late at night when I don't

think things through. I was trying to think of a disease that doesn't

cause death or deformity and didn't consider the fact that Fibromyalia

is a very painful condition. Please accept my apology. I was trying

to make the point that PSC is not an indolent disease and used an

inappropriate example.

[Guest guest]

..jonathan, not only is your liver working well, but your head is clear

as a bell. i totally agree with you. by the way, how are you feeling

today?

pam in california>