How to stop the itch?

[Guest guest]

THIS IS MY FIRST MY POST, AND I'M VERY ANXIOUS TO HEAR HOW YOU ALL

COPE...I was diagnosed with PSC about 2 months ago, but have been

suffering symptoms of PSC for about 7 years. I was misdiagnosed, as

it turns out, with Myelodysplastic Syndrome in early 2001. 7 bone

marrow aspirations later, a new set of doctors (at the Mayo clinic

in Rochester, MN) discovered that my bone marrow is actually normal

and undiagnosed me with MDS. However, they noticed that my liver

was quite cirrhotic and sent me off to GI where I ultimately learned

that I have ulcerative colitis and PSC, and now I have been placed

on the liver transplant list. My current MELD score is 8, so the

doctors say I won't get an organ for quite a while. The trouble is

my itching is so out of control that I spend hours at a time digging

into my skin past the point of bleeding, and this has become an

every day occurrence. I've taken Questran powder, Rifampin, seen

dermatologists who have given me Prednizone, Triamcinilone, blah

blah blah, and nothing works for me. Does anyone have any ideas.

The doctors at the Mayo liver transplant center said Urso wouldn't

help and are somewhat throwing their hands up in the air in

confusion at why my skin is so affected. They mentioned trying to

charcoal diffuse the blood to berid of possible high levels of

toxins but that hasn't come yet? I JUST CAN'T BELIEVE THE ITCHING,

I DON'T SLEEP, I ITCH HOURS EVERY DAY, PLEASE HELP!!!

-.

[Guest guest]

I JUST CAN'T BELIEVE THE ITCHING,

> I DON'T SLEEP, I ITCH HOURS EVERY DAY, PLEASE HELP!!!

>

> -.

I am the caregiver to husband Bob diagnosed PSC '99 , There have been many posts

here about different ways people have dealt with the itching. Someone will tell

you soon how to mine the archieves and gather info you want. I am sorry I am

not that savy with computer.

Please know that we welcome you and are sorry you are here but glad you found

us. The weekend is very quiet but someone will get to you soon.

Sounds like you are on the right track with the things you are giving up. Try

and keep a journal daily and then you can see what is helping.

Regards,

dee

[Guest guest]

-----Original

Message-----

I JUST CAN'T BELIEVE

THE ITCHING

Hi ,

Welcome to the group.

My son’s doctor (Director of Hepatology at Baylor in Dallas) gave

him a prescription for Phenobarbital for his itching. He said it would help the flow of bile

and taken at night, also help him sleep.

Must be a wonder drug, cause we never filled

the scrip! His itching just stopped,

for some unknown reason, when it started back up a week later, it wasn’t

as bad. We keep waiting for it to

come back with the same vengeance, but so far so good. His local GI told him to take Charcoal (pill

form) to see if that would remove enough toxins from his blood to control the

itching, but he hasn’t needed to try that either. Some group members report tanning beds

help, others –

hot and/or cold

baths. Seems you have tried just

about everything most people have, I wish I could offer more help.

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

[Guest guest]

I feel your pain brother. Questran and Rifampin did

it for me. But it doesn't work over night give it some

time. Phenobarb is some potent stuff I took some and

slept for 2 days. I used to itch all night long. I

would go to work just to keep my mind on something

else. Hang in there buddy.

Mike McGookin PSC 95' Tx 06'

--- jeremykolars wrote:

> THIS IS MY FIRST MY POST, AND I'M VERY ANXIOUS TO

> HEAR HOW YOU ALL

> COPE...I was diagnosed with PSC about 2 months ago,

> but have been

> suffering symptoms of PSC for about 7 years. I was

> misdiagnosed, as

> it turns out, with Myelodysplastic Syndrome in early

> 2001. 7 bone

> marrow aspirations later, a new set of doctors (at

> the Mayo clinic

> in Rochester, MN) discovered that my bone marrow is

> actually normal

> and undiagnosed me with MDS. However, they noticed

> that my liver

> was quite cirrhotic and sent me off to GI where I

> ultimately learned

> that I have ulcerative colitis and PSC, and now I

> have been placed

> on the liver transplant list. My current MELD score

> is 8, so the

> doctors say I won't get an organ for quite a while.

> The trouble is

> my itching is so out of control that I spend hours

> at a time digging

> into my skin past the point of bleeding, and this

> has become an

> every day occurrence. I've taken Questran powder,

> Rifampin, seen

> dermatologists who have given me Prednizone,

> Triamcinilone, blah

> blah blah, and nothing works for me. Does anyone

> have any ideas.

> The doctors at the Mayo liver transplant center said

> Urso wouldn't

> help and are somewhat throwing their hands up in the

> air in

> confusion at why my skin is so affected. They

> mentioned trying to

> charcoal diffuse the blood to berid of possible high

> levels of

> toxins but that hasn't come yet? I JUST CAN'T

> BELIEVE THE ITCHING,

> I DON'T SLEEP, I ITCH HOURS EVERY DAY, PLEASE

> HELP!!!

>

> -.

>

>

>

>

>

[Guest guest]

Hi, I was

desperate too, just recently but am having a reprieve thank goodness. My

doctor increased my urso, added questran twice daily and I also take

naltrexone. The naltrexone took about two weeks to get used to, I wasn’t

sure I could keep taking it because it made me foggy at first. I too was in

bed for 3 hours itching before sleep if I could sleep at all, so I got a

prescription for Ambien CR, so that’s been helpful. I hope you can find

a combination of things to help.

Lara

PSC 2005, UC 2006

[Guest guest]

, I'm sorry you have to go through all this.

I was dx in 1997 and got my first symptoms in 2000. I

kept it pretty in check until 2 years ago when the

itching started and has never stopped.

Here are some things to try that you did not mention.

Going to a tanner to help break down the bilirubin so

the bile salts are not irritating the nerves under

your skin.

I use this calming lotion that is very expensive and

has cloves in it (so you smell like cloves), but I get

some relief using that.

Take cool baths/showers, wear loose fitting clothes,

turn down your thermostat - warmer temps makes the

itching worse.

I also take hydroxyzine

I take Naltrexone (renders me pretty much useless

after I take it in the evening)

I also was put on Zofran - which is a drug for

anti-nausea for chemo patients, but it also helps with

itch relief.

And, I take 4 benadryl a day.

Having said all that, I itch to the point that I don't

get rest at night and my feet are raw and bleeding

from the digging/scratching. My back looks like a

battle zone from scars. My arms are scabbed, I even

itch in my noise, inner ear and a few other places

that itching is not appropriate for in the workplace.

Cindy Baudoux-Northrup

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[Guest guest]

I hadn't been diagnosed with PSC yet when my itching started so I didn't know what was causing it. I ended up treating it like an allergic reaction. I swiched over to a detergent with out perfumes and dyes (Tide free), I swiched my soap to something milder (Lever 2000 (white)). I stopped wear all clothes items that weren't made of 100 % cotton. I even changed the sheets on the bed to something that was verry high thread count. In addition to this I saw my dermatologist and got a perscription for a very strong anti-itch cream (sorry I can't remember the name of it now). After doing all these things and watching my diet for the foods I already knew I was allergic to (chocolate, egss, wheat, and milk) I got it to the point that it was tolerable and I was finally able to fall asleep at night without feeling like someone had put itching powder in my bed. I'm not sure what exactly helped or if it just stopped on its own but hopefully

something I tried will help you. Pat (CA)jeremykolars wrote: THIS IS MY FIRST MY POST, AND I'M VERY ANXIOUS TO HEAR HOW YOU ALL COPE...I was diagnosed with PSC about 2 months ago, but have been suffering symptoms of PSC for about 7 years. I was misdiagnosed, as it turns out, with Myelodysplastic Syndrome in early 2001. 7 bone marrow aspirations later, a new set of doctors (at the Mayo clinic in Rochester, MN) discovered that my bone marrow is

actually normal and undiagnosed me with MDS. However, they noticed that my liver was quite cirrhotic and sent me off to GI where I ultimately learned that I have ulcerative colitis and PSC, and now I have been placed on the liver transplant list. My current MELD score is 8, so the doctors say I won't get an organ for quite a while. The trouble is my itching is so out of control that I spend hours at a time digging into my skin past the point of bleeding, and this has become an every day occurrence. I've taken Questran powder, Rifampin, seen dermatologists who have given me Prednizone, Triamcinilone, blah blah blah, and nothing works for me. Does anyone have any ideas. The doctors at the Mayo liver transplant center said Urso wouldn't help and are somewhat throwing their hands up in the air in confusion at why my skin is so affected. They mentioned trying to charcoal diffuse the blood to berid of possible high levels

of toxins but that hasn't come yet? I JUST CAN'T BELIEVE THE ITCHING, I DON'T SLEEP, I ITCH HOURS EVERY DAY, PLEASE HELP!!!-.

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