On Ursoeoxyholic Acid (UDCA)

being new to PSC and needing to learn a lot about the condition I searched the Web far and wide..
my search turned up information on the possibility that ursoeoxyholic acid (UDCA) might slow or halt the progression of PSC if given in doses larger than that prescribed for Primary Biliary Cirrhosis (PBC) [a somewhat similar but NOT the same liver disease as Mette's]..
that information is clickable in the below quoted letter to a Swedish doctor/researcher..

START QUOTE (My E-mail dated 28 July 2000):

Dr. Ulrika Broomé,

My wife (Mette) was diagnosed with PSC at the Åarhus Kommune Hospital on 22 June via ERCP.
Since then I've tried to learn as much as possible about the disease.

I found (at http://www.psc-support.demon.co.uk/oxford/oxford03.html ) notes from a speech given by Dr. Roger Chapman, Consultant Gastroenterologist at the John Radcliffe Hospital in 1997 in which he indicated there is a large (300) patient Urso study in Sweden.

Many references to you and your work with PSC in Sweden cause me to conclude that you are either conducting the study, or are very close to it. Though I recognize that the study is probably double blind, I wonder if any preliminary findings are available. The reason I ask, other than the obvious, is that there is a web based PSC support group (http://www.egroups.com/messages/psc-support) presently abuzz with folks either talking their doctors into upping their Urso level to Dr. Chapman's 20-30 gram per patient kilo, OR they are just self medicating to that level.

I'd like to report your thoughts on the subject to the support group, or invite you to do that yourself. [You may join the group and monitor, or participate in, the discussion by sending a blank email to psc-support-subscribe@egroups.com].

Of course, if warranted I'd also like to take a shot at convincing the Internal Medicine folks in Åarhus to up Mette's prescription level.

Thank You in advance,

Denver D. Robinson,
A Texan in Denmark

P.S. Mette's "story" is available on my web site (no ads) www.Texan.dk--click on the one page Summary link.

cc: Ezra Iszat (an active member of the support group and source of MANY references to your work.)
END QUOTE

START QUOTE (Dr. Broomé's reply, dated 29 July 2000):

Dear Mr. Denver D. Robinson,
Thank you for mail with the interesting webb sides. I will inform my patients about this.
As you thought I am involved in the large Nordic study with PSC and UDCA. The study will be running for 5 years and we do not have any data at all and we do not intend to do any analyzis until the study are finished. It is a doubble blind study but there is quite obvious that we can see on the lab test who is getting active or not active medicine-but if this has any impact on outcome I do not know. My personal belief-but this is not based on true science is that UDCA will not have effect on progression but perhaps on the risk of developing cholangiocarcinoma-this will however, be very hard to prove if we are not able to do meta analyzed in the future. The problem with meta analyzes will be the diffferences in doses, length of follow up and so on. It seems as if the patients do accept the higher doses 20 mg /kg body weight.
I hope your wife Meta is doing well and send my best greetings to her.

Sincerly
Ulrika Broomé
END QUOTE

my thoughts are:
Her observation that it is "quite obvious . . . on the lab test who is getting active or not active medicine" means that for sure Urso affects the results of lab tests. But, she notes that Urso may or may not have an impact on the "final outcome"..

therefore:
there is no clinical proof that high dose Urso is effective (at anything to do with PSC other than affecting the results of lab tests)..
conversely, there is no proof that it is not effective at slowing the disease..
and, there is no proof it is harmful..

it is thought (from this study) that it might be helpful (cholangiocarcinoma, at least)..
it does not seem to be harmful (from this and other studies)..

conclusion/plan:
we will attempt to convince Mette's doctor to prescribe around 25mg per day/kilo--and hope for the best..

each of you should decide for yourself what you will do..
(that is: if in five or 25 years it is proven that high dose Urso causes cancer of nose hair follicles--then don't come crying to me if your nose falls off! Or, another way of saying it: I'm not a physician and I don't even play one here..I'm in no way responsible for your decisions on anything. But, good luck in all that you do try.)

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