We're trying a new itching solution-Naltrexone

[Guest guest]

Cholestyramine never worked for me. Steroids and benadryl worked for

a day or two. Rifampin was pretty good, but even that stopped working

and it drove my AST/ALT numbers way up.

So, the doctors at town prescribed Naltrexone for me. I haven't

seen any posts here about it, and what I've found on the internet so

far is that it's an opiate antagonist used to treat alcohol and

narcotic abuse.

One of my concerns is that this effectively prevents me from taking

any of the pain meds I've had to use every couple weeks (hydrocodone,

etc.) when the Crohns flares up in my throat.

Has anyone here had experience with Naltrexone, and how does one

manage pain while on it?

Tom

PSC 1999

Crohns 2006

[Guest guest]

Hi Tom,

My first itching med was actually Naltrexone--my hep at Washington

University in StL MO has had great success with it. While I was

undergoing diagnosis, and felt like I wanted to find a chainsaw to

rid myself of my hands and feet to finally STOP the itching, it

worked. Unfortunately, it also kept me awake at night with horrible

mental images and suicidal thoughts. My itching started to go

away within 12 hours of taking it, and stayed away for over a day

after my last dose. I wish that I could take it, because for me it

WORKED! But that side effect was awful--I won't risk feeling that

way again.

It is absolutely contraindicated, however, with narcotics and

alcohol. I'm not sure how you would be able to make that work...

I hope you find a solution!

Genevieve

UC 1980, J-Pouch 1999, PSC 12/07

> Has anyone here had experience with Naltrexone, and how does one

> manage pain while on it?

>

> Tom

> PSC 1999

> Crohns 2006

>

[Guest guest]

Hi

Tom,

I thought I would

respond to this. Itching has always been Todd’s main problem both

before transplant and now with recurrent PSC. He has been on Flagyl for

the past 2 years to try to keep it under control. It worked GREAT for a

year or so, but has diminished in its effectiveness over the past 9 months

(Rifampin and many other treatments did that also). He still takes it,

but in addition he is on 100mg of Zoloft. When things were really bad

this past summer we contacted Dr. Nora

Bergasa again for her help

and input with Todd’s local hepatologist. She recommended Naloxone

infusions first to minimize the withdrawal reaction and then to be changed to

oral naltrexone. Todd never did proceed with this because things did

become more tolerable for him. We wanted to wait to see before we went

this route. Dr. Bergasa said there were options if these things did not

work. If you don’t find relief keep looking…doctors like Dr.

Bergasa are willing to help and understand the devastating effects pruritus has

on peoples lives.

Let us know about the

counteraction with pain meds…I’m real curious what the answer is on

that.

Together in the fight,

Whatever it takes!

Joanne (mom of Todd,

21, PSC 01, Crohns 02, TX Twice 03, rPSC 05, Diabetes 06, trying his best to

live life to the fullest 08)

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