Re: Enzymes and Urso/Actigall--GOOD NEWS

[Guest guest]

Hi Tom,

Thank you for the information re Urso/Actigall and thier effects on early

stage PSC. My husband has been taking Actigall for over a year and his LFTs

are down dramatically, with the only elevation being the GGT (ranges from

120-150, but was up to 1000 at one point) and a minute elevation in direct

bili. He started out at 900 mg, but after reading about the study in England

that looked at higher doses, I approached his doctor who was very amenable to

bumping him up to 1200, which he tolerated well, and now 1500, which he just

started.

Reading your e-mail was uplifting and gave me some hope for the future. I

thank you for sharing your thoughts.

Liz

[Guest guest]

Dear Tom,

Thank you for the insightful news about the ursodiol and early stage PSC. I

just have to believe it is to 's advantage that it was caught early. I

tell myself we have time on our side. I also believe the next decade will

bring great strides in transplant technology, gene therapy etc. I also

appreciate your theology. I know God is the great physician and my hope is

in Him. My husband reminds me everyday we're doing everything humanly

possible to give every advantage. Some things are out of our

control....speaking of which...I'm sitting in an empty house right now as

the packers load the moving van. We're scheduled to leave Hawaii June 12 for

Norfolk Virginia, but recently some changes have occurred, and we may not be

going there at all, but somewhere else. All this to say right now there is

very little I have control over in my life. Really don't know where we're

going, soon to be homeless...HA! but it really doesn't bother me like it

would have before. My complete focus is my son and the fact that right now

he feels good, is active, and excited about starting college in August.

Nothing matters but the health of my family. All my worldly possessions

could fall into the Pacific ocean, and I'd be like " oh well " .....thanks

again Tom.

Enzymes and Urso/Actigall--GOOD NEWS

> There is a common misconception about the impact of Urso and Actigall

> on PSC patients, particularly those in the early stages of the

> disease. You will hear that Urso doesn't do anything to help. That

> is true in late stages, but please be reminded of several admitted

> flaws in that reasoning and research, all of which are good news:

>

> First, all such studies have been done on late stage PSC patients.

> There has yet to be a scientifically controlled study on the effect

> of

> Urso in early stage PSC patients. The reason, according to Dr. Henry

> Fishman, incoming president of the American Association for the Study

> of Liver Disease, is that it has proven difficult to find sufficient

> early-stage PSC patients to perform statistically valid studies. Be

> careful about drawing the wrong conclusions from studies done on

> patients whose profiles don't match yours.

>

> Second, there is anecdotal evidence that Urso, particularly in high

> doses (more than 15-20 mg/kg/day)will not stop PSC, but it will

> dramatically slow the progression. Transplant and surgical

> technology

> has made huge progress in just the last five years. If we can slow

> the progression of PSC, that gives us more time to take future

> advantage of technologies which are unheard of today. Look at the

> research. Liver disease was a death sentence just five to ten years

> ago. Now, with current stenting, angioplasty, and transplant

> technology, the prognosis is much more positive. I can't wait to see

> what the next decade brings.

>

> Third, improvements in enzymes mean something. Remember, those

> enzymes are released when cells are being distressed or destroyed.

> Simple logic dictates that when the enzymes improve, the rate of

> destruction is slowed. There is also anecdotal evidence to support

> this.

>

> Fourth, some will argue that the bigger risk in early stage PSC

> patients is the possible development of cholangiocarcinoma (cancer)

> down the road. A 1999 study showed liver cancer in 60% of PSC

> patients after 25 years. Urso will help the bile flow easier and

> make

> it less caustic, which may help prophylactically.

>

> Fifth, and I'm going to introduce theology here, God is much bigger

> than this disease. A day doesn't go by when I don't think about PSC.

> But, a day also doesn't go by when I don't thank God that He is

> walking through this with me. I've been blessed with PSC because it

> has strengthened my walk with the Lord and has provided a wonderful

> opportunity to share my faith with others. Keep the faith! Faith is

> the spirit.

>

> Tom

>

>

>

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>

[Guest guest]

In a message dated 5/16/00 3:57:01 AM Pacific Daylight Time,

butltc@... writes:

> A 1999 study showed liver cancer in 60% of PSC

> patients after 25 years. Urso will help the bile flow easier and

> make it less caustic, which may help prophylactically.

Tom, Could you please reference this study. Everything I've read says 7%-12%

of a PSC patient developing Cholangiocarcinoma. (But the latest study was

pre 1999)

Thanks. --Adam