Re: New School learning

[Guest guest]

,

MELD stands for Model for End Stage Liver

Disease. Your MELD score is the product of the calculation of a formula that

takes into account Total Bilirubin, INR(essentially clotting time), and Creatinine

(an indicator of kidney function). MELD is basically a predictor of survival

without a transplant –the higher the MELD score, the less likely you will

survive. It is used to establish a patient’s priority for a liver once

they are Listed, and also as parameter for when a

patient should be listed. Although it has been officially adopted by UNOS,

there is still some controversy about it because it does not take into account

factors that may affect survival without a transplant, such as a history of variceal bleeding, multiple cholangitis

attacks, and ascites. As you may have gathered from

some of the posts, there is a mechanism by which a Center can add points to a

patient’s MELD score, for such things as tumors of certain kinds and

sizes, effectively bumping them up the list .

I sympathize with you on the itching…been

there, done that, don’t want another T-shirt. The usual first line of

treatment against itching associated with liver disease is Questran

(cholestyramine resin). Originally developed to

reduce cholesterol, it works by binding to excess bile products before they can

be deposited in the skin and cause the itching. It’s awkward to use,

though – comes in powder form and has to be mixed each time, and has a

number of other unpleasant side effects. At one time, most doctors were also

prescribing one or more of the antihistamines, like Atarax

or Benadryl, but it’s now felt that the only benefit they provide is to

put the patient into a stupor so they don’t care about the itching. More

recently, the antibiotic Rifampin (rifampicin) has been prescribed. This was developed to

treat Tuberculosis, and there is no clear conclusion about why it relieves

itching. Rifampin can be toxic to the liver, so close

monitoring of LFT’s is called for, especially

in the first month to two months. There is also an ongoing NIH-sponsored study

in New York, looking at

the effectiveness of Gabapentin in relieving the

itching. Unfortunately, no single agent works for everyone,

and finding one that works for you is still pretty much trial and error. And

even then it may not work all the time – some of us have experienced the

situation where the level of itching corresponds to external factors like

stress.

Personally, I think it’s essential

to have the kind of relationship with a Hepatologist

where s/he is willing to listen to you, and work with you as a partner. If I

did not have that kind of relationship with my Hep, I’d

be finding a new one.

Steve

Rahn

L Tx 9/6 & 9/8 '85. (Wash. U-STL)

Listed for Re - Tx (U of Iowa)

www.presumedconsent.org

" Do

not go gentle into that good night

Rage,

rage against the dying of the light "

(Dylan

)

New School learning

This is all new to me. What is or an MELD

score. What are your LFT's like. My doctor is happy with my

LFT " s but I feel like crap. I'm also itching everywhere there is

skin. But he claims my bloodwork dosen't warrant an ERCP or any

procedure. He increased my Actigall but it hasn't helped. I'm on

Imuran and predisone.which blows my body weight up. What am I to do?

[Guest guest]

,

Steve gave you good info on MELD score and controlling itching. I

really didn't get my itching under control until I started using

Rifampin. Control of itching is not its main application, but it does

work wonders for some of us PSCers. Actigall has not been proven to

increase time to cirrhosis or transplant (as it has for PBC) but it

does improve LFT's - thus indicating a liver that is receiving less

damage. It also helps reduce the risk of colon cancer (which if you

have UC is higher than average).

Has your doctor told you why you are taking Imuran and predisone?

Although they have been used in several studies of PSC neither has

shown any positive effect in slowing the progress of PSC. Perhaps

they are for another condition you have.

I agree with Steve's last statement, if my doctor doesn't listen and

respond to the problems I'm having, whether or not they show up in

testing, I'm going to be looking for a doctor that does.

Tim R ltx 4/4/98

> ... My doctor is happy with my LFT " s but I feel like crap. I'm

also itching everywhere there is skin. But he claims my bloodwork

dosen't warrant an ERCP or any procedure. He increased my Actigall

but it hasn't helped. I'm on Imuran and predisone.which blows my

body weight up. What am I to do?