EXTREME ITCHING w/PSC

[Guest guest]

I have a 20 year old son who has PSC and Crohns. Crohns flares up now

and then but there isn't anything that is as bad as the Extreme itching

he experiences on a daily basis. He has an excellent diet, lots of

veggies and fruits, and tons of water!! He can't even sit through a

job interview with out itching his body! Our doctor said that as

recent as 10 years ago they would have already replaced his liver

because the itching scored so high on the list for transplants because

it literally drove the patient INSANE!! At this point he wants so

badly to move on with his life but we honestly have no idea where to

turn. We have tried to contact his doctor multiple times and for some

reason he is ignoring us. Is this because he has NO ANSWERS??? Does

my son have to just learn to live with this until his liver

transplant? He has no hair left on his legs and has gone on and off of

sleeping meds because, when he does finally fall asleep, he doesn't

feel the itch. I am so scared and tonight he finally told me, " I'm

just giving up, there isn't anything to help me. " I am very scared,

frustrated, and sad. If anyone has any enlightenment, please contact

me!! Shae

[Guest guest]

Dear Shae;

My son had excellent relief from itching with rifampin (rifampicin).

Within a few days after taking it, his itching completely subsided

and has not returned. Rifampin is an antibiotic, but it has the

secondary effect of activating a receptor (called the pregnane X

receptor, PXR) that in turn boosts the levels of a number of enzymes

of bile transport and metabolism in the liver. It has been proposed

that it acts in a complementary way with ursodeoxycholic acid in

cholestatic liver diseases like PSC:

_____________

Gastroenterology. 2005 Aug;129(2):476-85.

Complementary stimulation of hepatobiliary transport and

detoxification systems by rifampicin and ursodeoxycholic acid in

humans.

Marschall HU, Wagner M, Zollner G, Fickert P, Diczfalusy U, Gumhold

J, Silbert D, Fuchsbichler A, Benthin L, Grundström R, Gustafsson U,

Sahlin S, Einarsson C, Trauner M

Department of Medicine, Karolinska Institutet, Karolinska University

Hospital Huddinge, Stockholm, Sweden. hanns-

ulrich.marschall@...

BACKGROUND & AIMS: Rifampicin (RIFA) and ursodeoxycholic acid (UDCA)

improve symptoms and biochemical markers of liver injury in

cholestatic liver diseases by largely unknown mechanisms. We aimed to

study the molecular mechanisms of action of these drugs in humans.

METHODS: Thirty otherwise healthy gallstone patients scheduled for

cholestectomy were randomized to RIFA (600 mg/day for 1 week) or UDCA

(1 g/day for 3 weeks) or no medication before surgery. Routine

biochemistry, lipids, and surrogate markers for P450 activity (4beta-

hydroxy cholesterol, 4beta-OH-C) and bile acid synthesis (7alpha-

hydroxy-4-cholesten-3-one, C-4) were measured in serum. Bile acids

were analyzed in serum, urine, and bile. A wedge liver biopsy

specimen was taken to study expression of hepatobiliary ABC

transporters as well as detoxification enzymes and regulatory

transcription factors. RESULTS: RIFA enhanced bile acid

detoxification as well as bilirubin conjugation and excretion as

reflected by enhanced expression of CYP3A4, UGT1A1, and MRP2. These

molecular effects were paralleled by decreased bilirubin and

deoxycholic acid concentrations in serum and decreased lithocholic

and deoxycholic acid concentrations in bile. UDCA on the other hand

stimulated the expression of BSEP, MDR3, and MRP4. UDCA became the

predominant bile acid after UDCA treatment and lowered the biliary

cholesterol saturation index. CONCLUSIONS: RIFA enhances bile acid

detoxification as well as bilirubin conjugation and export systems,

whereas UDCA stimulates the expression of transporters for

canalicular and basolateral bile acid export as well as the

canalicular phospholipid flippase. These independent but

complementary effects may justify a combination of both agents for

the treatment of cholestatic liver diseases. PMID: 16083704.

____________________

Rifampin has been shown to be fairly effective and safe in the

treatment of pruritus (itching) associated with cholestatic liver

diseases:

____________________

Liver Int. 2006 Oct;26(8):943-8.

Rifampin is safe for treatment of pruritus due to chronic

cholestasis: a meta-analysis of prospective randomized-controlled

trials.

Khurana S, Singh P

Division of Gastroenterology and Hepatology, Hepatology Section, VA

land Health Care System, University of land School of

Medicine, Baltimore, MD 21201, USA. skhurana@...

OBJECTIVES: To determine the safety and efficacy of rifampin for

treatment of pruritus associated with cholestasis due to chronic

liver disease. METHODS: Medical literature was searched

systematically using keywords as rifampicin, rifampin, rifamycin,

cholestasis, pruritus, itching, and liver disease. Trials that

compared the efficacy of rifampin with placebo/alternative for

treatment of pruritus due to chronic cholestasis were selected for

analysis. Primary outcomes were resolution of pruritus and

development of side effects. Association was measured with the odds

ratio (OR). Breslow-Day method was used to treat for homogeneity

under null hypothesis that OR was consistent across all the trials.

Corrected Mantel-Haenszel chi(2) test was used to test if OR differed

systematically from value of 1. RESULTS: Five prospective randomized-

controlled cross-over trials with 61 patients were identified.

Treatment with rifampin led to complete or partial resolution of

pruritus in 47 (77%) patients as compared with 12(20%) treated with

placebo or alternative (OR 15.2, 95% confidence interval 5.2-45.6,

P=0.001). Four (7%) patients treated with rifampin suffered side

effects, which resolved after its discontinuation. There was no

incidence of hepatotoxicity. Test of heterogeneity for primary end

points among the trials was not significant (P=0.16). CONCLUSION:

This meta-analysis suggests that rifampin is safe and effective for

treatment of pruritus due to chronic cholestasis. This analysis also

suggests that use of rifampin for short duration is associated with a

low risk of hepatotoxicity. PMID: 16953834.

_____________

I would recommend trying this if your son has not done so already. It

worked wonders for our son.

Best reagrds,

Dave

(father of (22); PSC 07/03; UC 08/03)

[Guest guest]

Shae,

I'm 24 and have PSC. And for me the biggest problem is also

itching. It is just relentless no matter what I do. And I don't

really know what helps. I'd first start by suggesting a different

doctor. I think that if the doctor is avoiding you, maybe your

right, he doesn't know what to do about it.

I was just officially diagnosed 3 weeks ago and while it's nice to

have an answer to what I have, I would like to have relief from the

symptoms. My hepatologist told me to avoid the sun and anything

that makes me sweat a lot, take cool showers, and benadryl creams.

None of that works very well for me. Cool showers help sometimes.

And other board members say that the sunlight helps them.

There are medications that can be taken. I was put on atarax at the

end of my pregnancy because the itching got so bad (this was before

I was dx) and I honestly don't know if it helped or just knocked me

out. Because yes, sleeping is the only relief I get from it.

Maybe others can give some insight into the other medications. I

can't take much now because I'm nursing my twins but sometimes

consider stopping so I can take something. My hepa said that taking

urso can help with it. I've only been on it for a few days. Is

your son on it?

Sorry I couldn't be more help. I feel for your son. It's

terrible.

in NE

24

psc dx 8/07

>

> I have a 20 year old son who has PSC and Crohns. Crohns flares up

now

> and then but there isn't anything that is as bad as the Extreme

itching

> he experiences on a daily basis.

[Guest guest]

Shae,

Im 28yrs old and too have severe itching. The doctors have me on

three different types of medication for itching. I currently take

Periactin, Atarax, and Rifampin. These help some but not completely.

I have sores all over my body from itching so I can relate to your

son's situation. I also would recommend finding a different doctor

since he is ignoring you. Hope this helps.

Sandi

PSC 1/05

[Guest guest]

Shae,

I have a 21 year old son who also has the extreme, " drive you insane "

itching. The itching was his worst symptom before his transplant in

2003 and now with the recurrent PSC it is once again his worst

symptom. My first suggestion is to find either a new doctor that

will try to respond to his itching or you can do what we did. After

we had tried all the medications that are usually prescribed by the

hepatologist(rifampin, atarax, doxepin, etc.) we found a specialist

in NYC for itching. She has been wonderful for my son. She tries

things that others don't because they are all experimental. He was

on Flagyl for a 1 1/2 years and that worked great, but now it has

stopped working. He is now on Zoloft (75mg a day) and he says it

doesn't help, but I notice a slight change...at least he can sleep at

night and not every day is intolerable. If things don't get better

soon she will try something else.

But please don't let him give up. There are things that might work

for him...they just need to be prescribed to find out.

I hope you find something to help.

Best of luck,

Joanne (mom of Todd, 21, psc 01, crohns 02, tx twice 03, rPSC 05,

diabetes 06, living life to the fullest 07)