Re: Does anyone have just PSC?

[Guest guest]

,

as far as I know I only have PSC!

I only take prescription drugs: Urso, Prednisalone and Azathioprine. I

also take Vitamin D3 and Calcium.

Steve Lawson.

--------------------------

cathyre123@... wrote:

>

> I keep reading all the e-mails and it just hit me that I do not seem to

> recall anybody else that just has PSC.

[Guest guest]

Hi --

I am very early stage PSC, first diagnosed last November after trying

to track down the cause of two years worth of elevated enzymes. My

only symptoms so far are episodic fatigue and insomnia.

Studies have shown that 70% of PSC patients also have IBD or UC.

While that is a concern, it also means that 30% won't have them...I

keep looking for that silver lining! In this lay man's opinion, my

observation is that a lot of PSC is diagnosed after the patient

already presents with IBD or UC, so the 70% figure may in fact be

elevated, especially when viewed in light of early stage PSC.

Be careful with so-called " natural " remedies. There is little if any

scientific evidence that they are effective, they are largely

unregulated, so potency is not assured, and they may do more harm

than

good. I'm speaking to myself here as much as anyone. It is very

easy

to accept unsubstantiated claims because they sound so good, yet

we'll

ignore scientific studies that prove otherwise. By the way, this is

coming from someone who takes a big vitamin " cocktail " every morning.

(But, I'm not taking milk thistle or SAMe.)

The only treatment right now that seems to have some positive effect

is high dose Urso/Actigall (>15mg/kg/day). Even though these are

prescription medications, I'll define them as " natural " because they

are naturally occurring bile salts. Bayer and Pfizer can just make

more than we can. You will see claims that Urso/Actigall doesn't

slow

down the progression of PSC. The problem with that argument is that

all such studies were done on late stage PSC patients, and simple

logic dictates that improved liver enzymes, especially in early stage

patients, is more than cosmetic.

So, what it all boils down to is this: First, keep a positive

outlook. Remember that a ton of progress has been made just in the

last five years, and I can't wait to see what happens over the next

five. Second, be suspicious of unproven claims. We all want magic

bullets, and that can cloud our thinking. The last thing I would

want

to do is take something that is either a huge waste of money or could

cause more harm than benefit.

Tom

[Guest guest]

Hi ,

I for one, have only had PSC. After dx in 1989 I started

treatment with Actigall - the relatively low dose, not the

higher dose now recomended. Since my first record of elevated

LFTs was in 1980 it was probably begining back then. I went on

the tx list in 1995 due to some complications at that time, and

by 1997 it was clear a tx was needed - even to me. (I always

hate to admit I need treatment). Transplanted 4/4/98.

Tim

__________________________________________________

[Guest guest]

Dear Tom

How Lucky you are to be having treatment for your PSC.I would

love to get help with mine.I have had PSC for 9 years and UC

for 28 years.After protesting again today I may get a biopsy

and refferal to a liver unit.Others in the group have told me

I am showing classic signs of Bacterial Cholangitis,but I would

be willing to try milk thistle rather than continue with nothing.

Regards

Alison Organ

Cheltenham

Re: Does anyone have just PSC?

> Hi --

>

> I am very early stage PSC, first diagnosed last November after trying

> to track down the cause of two years worth of elevated enzymes. My

> only symptoms so far are episodic fatigue and insomnia.

>

> Studies have shown that 70% of PSC patients also have IBD or UC.

> While that is a concern, it also means that 30% won't have them...I

> keep looking for that silver lining! In this lay man's opinion, my

> observation is that a lot of PSC is diagnosed after the patient

> already presents with IBD or UC, so the 70% figure may in fact be

> elevated, especially when viewed in light of early stage PSC.

>

> Be careful with so-called " natural " remedies. There is little if any

> scientific evidence that they are effective, they are largely

> unregulated, so potency is not assured, and they may do more harm

> than

> good. I'm speaking to myself here as much as anyone. It is very

> easy

> to accept unsubstantiated claims because they sound so good, yet

> we'll

> ignore scientific studies that prove otherwise. By the way, this is

> coming from someone who takes a big vitamin " cocktail " every morning.

> (But, I'm not taking milk thistle or SAMe.)

>

> The only treatment right now that seems to have some positive effect

> is high dose Urso/Actigall (>15mg/kg/day). Even though these are

> prescription medications, I'll define them as " natural " because they

> are naturally occurring bile salts. Bayer and Pfizer can just make

> more than we can. You will see claims that Urso/Actigall doesn't

> slow

> down the progression of PSC. The problem with that argument is that

> all such studies were done on late stage PSC patients, and simple

> logic dictates that improved liver enzymes, especially in early stage

> patients, is more than cosmetic.

>

> So, what it all boils down to is this: First, keep a positive

> outlook. Remember that a ton of progress has been made just in the

> last five years, and I can't wait to see what happens over the next

> five. Second, be suspicious of unproven claims. We all want magic

> bullets, and that can cloud our thinking. The last thing I would

> want

> to do is take something that is either a huge waste of money or could

> cause more harm than benefit.

>

> Tom

>

>

>

>

>

>

[Guest guest]

So far my only diagnosis is PSC. I have a colonoscopy scheduled for

this week though, so we'll see if that changes things!

athan

[Guest guest]

Hi ,

My husband, Jim who is 42, was diagnosed with PSC in 1998. He has only PSC,

and is also in an early stage, with no UC or IBD, at least not yet. He had a

colonoscopy last year and no evidence of UC was found. He is taking, in

addition to Actigall, something called Hepatogen, which was recommended by

Norm Hoffman, another group member, and fish oil, in addition to a

multivitamin as well. He gets them through a company called Vitamin

Research. Since going on this regime, including the Actigall, his LFTs have

gone down significantly. Hope this info is helpful.

Liz

[Guest guest]

Tom wrote:

> Second, be suspicious of unproven claims. We all want magic

> bullets, and that can cloud our thinking. The last thing I would

> want to do is take something that is either a huge waste of money or could

> cause more harm than benefit.

In defense of Milk Thistle, I think it has been pretty well established

that as long as we stick to reliable brands (like Thysilin) there is

almost no risk of it causing harm. It has been tested in much higher

doses than most people would probably take with no negative side

effects. As far as cost, it really isn't extremely expensive... at

least not compared to something like SAMe or even Actigall for that

matter (back when I was in college I was living on $500 a month, of

which $250 went for actigall!).

At the same time it's important to realize that Milk Thistle isn't a

cure, but it may help the liver to cope with some of the stresses this

disease puts on it. I think it's very possible that at least part of

the reason my liver function is still pretty good even though I've had

this disease for a long time, and my liver has taken a substantial

amount of damage is that I've been taking Milk Thistle. I don't know,

but I'm willing to spend $30 or so a month on the chance that it is

helping.

athan

[Guest guest]

thank you everyone who answered my question. Now I do not feel so alone, I am

so glad to know I am not the only one and this gives me hope that I may not

get UC or IBD. You guys are wonderful!!! Have a great day!!!!!