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> I am so frustrated! I am itching, but not jaundiced...does

anyone know

> what can be causing this? Please help!

>

>

>

>

>

>

> ---------------------------------

> Park yourself in front of a world of choices in alternative vehicles.

> Visit the Auto Green Center.

>

>

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> > I am so frustrated! I am itching, but not

jaundiced...does

> anyone know

> > what can be causing this? Please help!

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Park yourself in front of a world of choices in alternative

vehicles.

> > Visit the Auto Green Center.

> >

> >

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Guest guest

> > I am so frustrated! I am itching, but not

jaundiced...does

> anyone know

> > what can be causing this? Please help!

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Park yourself in front of a world of choices in alternative

vehicles.

> > Visit the Auto Green Center.

> >

> >

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Guest guest

> > I am so frustrated! I am itching, but not

jaundiced...does

> anyone know

> > what can be causing this? Please help!

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Park yourself in front of a world of choices in alternative

vehicles.

> > Visit the Auto Green Center.

> >

> >

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Guest guest

> > I am so frustrated! I am itching, but not

jaundiced...does

> anyone know

> > what can be causing this? Please help!

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Park yourself in front of a world of choices in alternative

vehicles.

> > Visit the Auto Green Center.

> >

> >

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  • 1 year later...

I'm glad you've found this group, and I'm sorry to hear your wife is having

problems with itching.

When I was diagnosed years ago, I was helped by Atarax (a skin-oriented

antihistamine), and by staying cool. Avoid hot baths and hot clothing. Keep the

skin moist; Eucerin cream is good. Use soft, smooth clothing and sheets. I liked

Wintersilk knit silk gowns. I found ordinary kitchen cornstarch to be

soothing. Sometimes a fan or a lambswool duster helped. The itching went away

when my

liver healed.

Recently I found a website in which my current doctor, Dr. n s,

talks about treating pruritis in liver disease. Below is the website. The

discussion of itching takes place between minutes 28 and 30 -- you can skip

straight

to this area, if you wish. She says that she finds antihistamines useless in

this kind of itching, as they just put the patient to sleep without treating

the underlying cause. (I was plenty happy to be sleepy when I itched!) She

describes medical approaches that she uses.

http://www.youtube.com/watch?v=E6vB5V5d3yQ &

eurl=http://www.truveo.com/Management-of-Autoimmune-Liver-Diseases/id/528624011

Best wishes to both of you. I'm glad you wrote.

Harper

AIH dx 2000

CD dx 2002

In a message dated 2/21/09 10:59:39 PM, terrygenehood@... writes:

> my wife is having alot of trouble with itching and we have tried alot of

> diff things what should we do and what do we use to help what med is there to

> help her

>

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, I'll give it another try, but I'm not hopeful. I would have sent the

group the information if I could have understood it. Th presentation, which is

poorly filmed live from a talk, is hard for me to understand. I have a small

laptop screen. Perhaps someone with a larger screen or speakers can get it.

Or, now that we know such information exists, maybe we can find it elsewhere.

These aren't OTC remedies; one would have to get a doctor to handle them.

Harper

**************

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Hi ,

Thank God I don't have severe itching, but I have saved these tidbits from

the digest in case the dreaded day ever comes. I hope something here may help

your wife.. The first two posts are prescription drugs:

I use the tanning bed to relieve itching - it worked for me by

relieving the itch to a certain degree - better, was the tip I got from the

book Hepatitis and Liver Disease..the doctor advised taking 1 pkt. Questran

first thing in the a.m.and another right after breakfast. Nasty stuff but the

relief is definitely worth it.

Rifampin which has stopped my itching completely. It took a few days to get

it stocked at my Walgreens (no one else had it either!) because it is a TB

medicine! I appreciate every day & nite the absense of itching

Helpful hints for itching from PBCers

*Drink plenty of water or other fluids.

*Avoid salty and fatty foods.

*Keep the itchy area cool and moist. Apply washcloths soaked in ice water.

However, remember that repeated wetting and drying will actually dry your

skin.

*Keep cool and stay out of the sun. Heat increases itching on many with PBC.

*Avoid taking a hot shower or bath. Keep the water as cool as you can

tolerate.

*Try an oatmeal bath to help relieve itching.

Wrap 1 cup of oatmeal in a cotton cloth and boil as you would to cook it.

Use

this as a sponge and bathe in cool water without soap. You may also try a

commercial product, such as Aveeno Colloidal Oatmeal bath.

*Avoid dry skin, which will worsen itching especially in cold weather.

*Avoid scratching as much as possible. Scratching leads to more scratching.

Cut nails short or wear cotton gloves at night to prevent scratching.

Covering

a wooden spoon or brush with a thick sock makes a great back scratcher and

doesn't cut the skin.

*Wear cotton clothing. Avoid wearing wool and acrylic fabrics next to your

skin.

*Use as little soap as possible. Use gentle soaps, such as Basis, Cetaphil,

Dove, or Oil of Olay. Avoid deodorant soaps when you have a rash.

*Try washing your clothes with a mild detergent such as CheerFree or Ecover.

Rinse twice to remove all traces of the cleaning product. Avoid strong

detergents when you have a rash.

*Take several breaks during the day to do a relaxation exercise,

particularly

before going to bed if stress appears to cause your itching or make it

worse.

Sit or lie down, and try to clear your mind of distracting thoughts.

Concentrate on relaxing every muscle in your body, starting with your toes

and going

up to your head.

*Some PBCers increase their ursodiol dosage by one or two tablets and this

seems to help. Please check with your doctor before making any changes to

your

dosage.

Hugs,

Dees, PBC dx 99 stg 2/3, Fibromyalgia 99, Fort Myers, FL. 53

**************A Good Credit Score is 700 or Above. See yours in just 2 easy

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I found a way to get to increase the image size for this presentation by

Dr. n s of UCSF, and below I've copied (I hope) what I see at

29:06. At the bottom I've added her comments on Urso and Eucerin use.

http://www.youtube.com/watch?v=E6vB5V5d3yQ &

eurl=http://www.truveo.com/Management-of-Autoimmune-Liver-Diseases/id/528624011

29:06

Pruritis - Treatment - Drugs

Cholestyramine -- binds bile salts.

Doxepine -- mast cell stabilizer

Rifampin -- microsomal enzyme inducer

Naloxone -- opiate receptor block

(Ondasetron -- blocks 5-HT3 receptors)

(Antihistamine - sedative)

o Don't give Urso close in time to Urso or " you'll just poop them both out

together. "

o Use Eucerin cream rather than lotion, which " just disappears " .

Best wishes.

Harper

**************

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, did you try to copy and paste the entire link into your browser?

That worked for me.

I sent a post to the PBC Digest in response to Joanne's post about

Witch Hazel and aloe vera helping her:

Joanne's email reminded me of all the things I tried for the unknown

cause of the blood running down my body from scratching itchies

pre-PBC dx, (used to sleep in gloves but of course couldn't work in

them) and reminded me how different we all are. I used witch hazel

and 99.9% aloe vera but those helped none whatsoever, nor did anything

else anyone has recommended. All Witch Hazel did was dry out my skin

and increase the itchies. I was unable to shave my legs, let alone

use depilatories. I started keeping a diary, which I still have,

covering a couple of years and all the dozens of things I tried that

failed. Nothing worked until biopsy post-dx I was put on questran and

actigall and AmLactin 12% and doxepin and triamcinolone ointment and

sumycin…with so many things, don't know what or which combo got rid of

them, although it did take a good 6 months. I was fortunate in that

the dermatologist and hepatologist were affiliated, so both knew the

" kind of itch " I needed to be treated for. I also took hydroxyzine

when I couldn't bear the itch but eventually developed a tolerance too

high (according to my notes, the dose would have put any normal person

out, by which I mean sleep). With all the body's mysterious ailments,

sometimes trial and error is the only option.

Kay, TX, AIH/AMA-NEGATIVE PBC

> Harper,

>

> I tried viewing your doc's presentation, but my computer would only

allow me to view it up until the point where she began discussing

vitamins.  Double ugh here. 

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very interesting post, Joanne...I was on pred when I developed the

dreaded itchies but maybe I had been weaned down too low for pred to

help? Don't know, just glad that abated...

Kay, TX, AIH/PBC

>

> Anne, I too took the Atarax and it was the only thing that helped.

But, I did have a spell when nothing worked....and that about drove me

nuts!!! If I have that problem again down the road I will ask to try

prednisone. At the time I didn't know about using that for itching.

I remember Lacy Jay who had to take the prednisone for her itching as

the Atarax nor anything else helped her. She stayed on low dose

prednisone until her transplant.

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I'm not the one to thank. I can't remember who told the group about this

video. Someone else was the source, and I'm very grateful to that person.

The doctor in the video is my hepatologist. In her office, there's a handout

from the National Institute of Health. I find it very helpful, and I've given

out a link for the handout. As new people may not have seen it, I'll send it

again:

http://digestive.niddk.nih.gov/ddiseases/pubs/autoimmunehep/

Harper

In a message dated 2/23/09 8:50:25 AM, bonitabreez@... writes:

> Harper,

>

> I got the entire video to play with the new link.  It didn't get hung up at

> all.  There is so much information there.  Thank you very much!

>

>

>

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Hi Kay,

We've tried Questran and UrsoForte and Ursodiol.  Couldn't tolerate any of

them.  The side effects made life really impossible. So...it was back to the

drawing board.  I'm taking 50 mg of Hydroxyzine which I don't think it a very

large dose, but it's enough to knock me out at night.  And I'll take that over

not sleeping at all.

My gastro wanted me to stop the Questran and Ursodiol to see if going gluten

free would bring my Alka Phos back down.  I have my biopsy follow-up appointment

Wednesday and will ask for a liver panel to see where my enzymes stand.  I've

noticed recently that the itch is more intense after eating something fatty like

nuts or cheese.

If I were to try to scratch wherever I itch, I couldn't move my hands fast

enough because this darned sucker just moves and roves around my body like a

carnival ride.  I can't even keep up with describing the locations verbally they

move that fast.  The only thing that helps is to squirm and scratch the worst

spots that don't " rove " fast enough. 

The hepatologist doesn't believe this is liver related because I don't have

itching on the soles of my feet or the palms of my hands.  Do you itch in these

places?

Thanks for sharing your experience.  I appreciate that.

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Harper,

I'm sorry.   I was referring to the wrong video.  But I had the same technical

problem with this video too.  I loved her way of presenting things...could have

listed to her accent all day long too.

I do have doctors who are willing to try new things to help me stop itching, so

I'm not really looking for OTC solutions.  Been there done that.

Thanks for anything you can pass along from what she said to do.

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's post reminded me that I forgot to include UVB light therapy

(phototherapy) for itching. The " funny " part about it is that I would drive

for an hour round-trip to spend more time dressing and undressing than I did

standing naked in the cylinder. So that should have been added to my

doctors' cocktail of treatments.

Pam, DSPS is Delayed Sleep Phase Syndrome. Here is a link:

http://www.stanford.edu/~dement/delayed.html

Kay

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, the bottoms of my feet never itched, best I can remember, and the

palms did but infrequently and I don't remember noticing that itch until

years after dx. It surprises me that your hep doesn't think your itching is

liver-related, but he knows more about you than I do. Did Actigall also

cause intolerable side effects? I hope your lft's show that your alk phos

has dropped with your being gluten-free. Keep us posted.

Kay

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Kay,

Yes, the Actigall gave me major side effects.  What I took was UrsoForte to

begin with.  A high dose I believe.  I could only tolerate a little over a week

because of feeling like I had the worst stomach bug of my life and so dizzy I

fell twice trying to get from my bed to the bathroom.

We tried Ursodiol in a much smaller dose I believe and that caused such stomach

upset I couldn't bear to look at food.

After going gluten and dairy free a while longer and then testing my liver

enzymes, I plan to go back to the Ursodiol.  Side effects be damned.  I have a

liver to protect (I think).

Reading 's recent post referencing the liver stiffening up clicked with

me.  I've been getting chiropractic adjustments on and off all my life.  For

about the past year I can no longer tolerate the particular adjustment where

they have you lay on your side on the edge of the table.  The chiro pushes back

on the top of your shoulder while pushing down on your knee making your upper

body go one way while the lower goes the other way. I can do this laying on my

right side where the left side is the side that's being stretched.  But I can't

do it laying on my left because when he tries to stretch the right side of me,

the side my liver is on, it actually feels like tissue deep inside under my rib

cage is tearing or pulling apart.  The last few times I could manage that move

it was very tender in that one spot for days afterward like a wound healing.

Ahh...just typing this and giving attention to that little question mark I have

in the back of my mind about this maybe, really being my liver is scary.  I want

like crazy to ignore it, but then there's the pain in my side, the itch...and

now the stiffness seems to add up...that keep pointing me in the direction of my

liver.  The only other thing I can come up with is that maybe the itching is

endocrine related, and maybe the pain and stiffness are old adhesions from my

cholecystectomy in 1994.  But that doesn't sound completely right either.

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You write, " my husband went on a low dos of zoloft and it got rid of the

itching

but our sex life stopped. "

Not to belittle the seriousness of the issue, but itching would halt most

people's sex lives!

Maybe Zoloft was the culprit, maybe illness in general caused the change.

Discuss with doctor to find alternatives.

Harper

In a message dated 2/25/09 12:17:16 PM, loisann227@... writes:

> my husband went on a low dos of zoloft and it got rid of the itching

> but our sex life stopped

>

**************

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my husband went on a low dos of zoloft and it got rid of the itching

but our sex life stopped

>

> Kay,

>

> Yes, the Actigall gave me major side effects.  What I took was

UrsoForte to begin with.  A high dose I believe.  I could only

tolerate a little over a week because of feeling like I had the

worst stomach bug of my life and so dizzy I fell twice trying to get

from my bed to the bathroom.

>

> We tried Ursodiol in a much smaller dose I believe and that caused

such stomach upset I couldn't bear to look at food.

>

> After going gluten and dairy free a while longer and then testing

my liver enzymes, I plan to go back to the Ursodiol.  Side effects

be damned.  I have a liver to protect (I think).

>

> Reading 's recent post referencing the liver stiffening up

clicked with me.  I've been getting chiropractic adjustments on and

off all my life.  For about the past year I can no longer tolerate

the particular adjustment where they have you lay on your side on

the edge of the table.  The chiro pushes back on the top of your

shoulder while pushing down on your knee making your upper body go

one way while the lower goes the other way. I can do this laying on

my right side where the left side is the side that's being

stretched.  But I can't do it laying on my left because when he

tries to stretch the right side of me, the side my liver is on, it

actually feels like tissue deep inside under my rib cage is tearing

or pulling apart.  The last few times I could manage that move it

was very tender in that one spot for days afterward like a wound

healing.

>

> Ahh...just typing this and giving attention to that little

question mark I have in the back of my mind about this maybe, really

being my liver is scary.  I want like crazy to ignore it, but then

there's the pain in my side, the itch...and now the stiffness seems

to add up...that keep pointing me in the direction of my liver.  The

only other thing I can come up with is that maybe the itching is

endocrine related, and maybe the pain and stiffness are old

adhesions from my cholecystectomy in 1994.  But that doesn't sound

completely right either.

>

>

>

>

>

>

>

>

>

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Lois, you wrote " my husband went on a low dose of zoloft and it got

rid of the itching but our sex life stopped. "

I never heard of an anti-depressant getting rid of itching, but it

must have been a godsend to him. When the itching goes away, one

doesn't want to do anything that could bring it back. And there are

other reasons someone ill would lose interest in sex. Also, certain

anti-dpressants are famous for killing sex drive. Prozac is one, and

perhaps zoloft is as well. But there are so many other

antidepressants that don't have that effect. If he has stopped the

prozac since the itching subsided and sufficient time has gone by for

it to be out of his system, the zoloft cannot continue to be the

culprit, if it ever was. He definitely needs to talk to his doctor

about this.

Kay

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  • 2 weeks later...
Guest guest

Itching can indicate liver problems are increasing.

My AIH was diagnosed after I developed itching without a rash.

Harper

AIH dx 2000

In a message dated 3/7/09 2:35:26 PM, proudgrandmamaof3@... writes:

> Can anyone tell me what is happening and if I'm going into some new liver

> disease stage?

>

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  • 3 months later...
Guest guest

I wish I had more time to post and read. Itching is normal for us heppers. I only itch when I take a pain killer. What it means is that your liver is overworking, in simple terms. Are you on medication? The meds will cause your liver to work too hard to detox. I can get you the medical reasons, I work in a hospital. Before I came to terms with my hepatitis C diagnosis, I went drinking in clubs. I itched like crazy. My boyfriend noticed it first. I will tell you that my liver biopsy came back normal back then, so I know it is not a sign of cirrohosis. I believe toxins get in your skin pores, this is another way of detoxing, sweating, the itching is the reaction of your skin to the poisons we put in our bodies. Tylenol, and drinking caused me itching. What are you taking?

-- [ ] itching

Hello everyone. I'm having severe itching that has lasted about five days...so far. I cant go out in public as its quite obvious something is wrong. Does this go away and is it a sign that things are getting worse?Please answer directly - every time I post a question someone sends me a link to somewhere else. Im looking for some personal esperience please.

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Yes I agree about personal experiences. I wanted to reply, so you would now I read this. I regret I am not able to give you any information.From our home to your home, we pray and speak blessings, success and prosperity.Walter L. Scheu, Sr., Th.D.RCFC

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I'm not on any medication right now. I'm going to my first hepatology appt in two weeks.

-- [ ] itching

Hello everyone. I'm having severe itching that has lasted about five days...so far. I cant go out in public as its quite obvious something is wrong. Does this go away and is it a sign that things are getting worse?Please answer directly - every time I post a question someone sends me a link to somewhere else. Im looking for some personal esperience please.

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