Itch is driving me mad : Hi l have a... - British Liver Trust

British Liver Trust
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Itch is driving me mad

1947san
1947san

Hi l have a terrible itch on my forearms upwards shoulders ,and above waist on my back ,it started two years ago and is now driving me mad ,l think l have tried everything from steroids ,creams light therapy which only made it worse my Dr says my liver function is just below normal.l am taking 8 portion a day 2 determine at night but I'm still itching and priming. I can't sleep with it ,l am so irritable

27 Replies
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Have you not asked to be sent to a dermatologist? If your liver results are not showing anything then that should be your next port of call x

My hubby has cirrhosis and had the intense itching too. Dr kept saying your liver is fine. Well it wasn't fine. He had his hernia fixed and they found he has cirrhosis. I'm not saying that's what you have but I wish we had pushed more. His #'s were always fine too

Pslade
Pslade
in reply to Pslade

Oh ya. He went to dermatologist also. Gave him cream for it. Helped a little

Yes have been to dermatologist they gave me 30 sessions of light therapy which just made it worse as my skin doesn't seem to like sunshine.

jojokarak
jojokarak
in reply to 1947san

What did the dermatologist say it was then because they wouldn't of sent you for light therapy treatment for nothing. My brother has it for psoriasis and they won't give it him often because it's expensive and me and my mum can't have because it doesn't help it brings ours out.

1947san
1947san
in reply to jojokarak

Yes it made my worse l told them l could not go on holiday because sun made it worse ,so really couldn't understand there thinking l go back at the end of Jan to see the consultant ! I had 22 treatments in total should have been 30 but the light therapy clinic said to stop as it was not doing any good l have not got psoriasis they don't know what it is .

1947san
1947san
in reply to jojokarak

They said it was pitrisis in other words itchy skin and don't know why ?

Faithfull
Faithfull
in reply to 1947san

Mine don't like water have a bath looks like I've been scratched to bits this started when drink was making me so I'll I get it bad but the cream zero double GP gives me dose stop it if I cake it on !

Cholestyramine light sachets will help - also try vicks vapour rub seems to help mine when it’s driving me mental

Hidden
Hidden
in reply to Wendy29

Hi

I'm on fexofenadine 180mg, works for me xxxx

vulnerable
vulnerable
in reply to Wendy29

Agree

Take benydrly three times a day pills....get the cream too....get flat ice pack sheets and apply them....using t towel between them....champagne ice coolers are also fab for arms....hope it helps

Insist on a full 'liver function check', as well as general blood tests and also a check for AMAs (antimitochondrial antibodies). Also insist on seeing a dermatologist. It's probably nothing, but your GP needs to be shaken out his complacency, you should not have to put up with being fobbed off in this way. Can you see someone else in the practice? Also, talk to the advisors at 'BLT' who 'host' this site: link to their website at top of page. Take care.

1947san
1947san
in reply to GrittyReads

Thank you l will take your advise

Questran light keeps the itching at bay .. one sachet a day to start then I dropped mine to one every other day .. I couldn’t do without it!

My itching started years ago when my liver disease was in its infancy (PBC and AIH) and my bloods were only slightly awry. My gastroenterologist only decided to give me a liver biopsy because of my mums liver disease history (the same) and the results showed I had the beginning of the same disease. The itch does not seem to correspond with how severe the disease is and some people do not suffer from it at all. My mum only ever had it mildly whereas over the years I have had it dreadfully in different areas or sometimes all over. It’s very debilitating and embarrassing and can make you feel awful - you should try to get tested by a good gastro or hepatologist.

1947san
1947san
in reply to Wendy29

Thank you for you advise

Cholestyrine took my itch away

I to have cirrhosis I get this itching at night on my legs and also on my stomach,And one part of my back just out of reach under my shoulder blade that does my head in to the max .have spoken to consultant about this he has told me this is quite popular..

Faithfull
Faithfull
in reply to Bugsy1962

I get it bad on feet to insansanity crazy mad can't spell

I have been prescribed Questran which is one of the most unpalatable drinks imaginable it's not 100% effective but does help a bit. Also try "Dream Cream" from Lush it really helps for a while.

Cobwebs
Cobwebs
in reply to A9KSY

Dream Cream also aids sleep because of the lavender. And cools the skin. Love it!

Hello,

Not sure if anyone has mentioned this to you...

A patient on the ward put ice cubes in the surgical gloves tied it and told my husband to use it - it gave instant relief.

The bile gets in your skin and causes the itching so it's not like itching from skin rashes.

All the best,

Pear

Hidden
Hidden

Hi 1947san, I have been going through similar symptoms and have tried phototherapy, Benadryl, Cortisone /anti inflammatory ointment and anything else you can think of including steroid injections. All I can say to you is I take the Benadryl at night which helps me sleep. Unfortunately , I also have what’s called Kryle disease. Little blisters form all around your ankles, wrists and the nape of your neck. They start to erupt (bleeding which than forms a tiny scab in the center of it.) Eventually, it falls off and repeats itself. In other words, it never goes away never, ever, ever goes away. I scratch myself silly at night to the point where I’ve had to wear my clothes inside out when I am at home . The seems irritate it more. it’s in my scalp as well. The other it’s just called puritus. I was told that the Kyrle disease comes from my diabetes/liver. They had to take three biopsies to determine what it was. The problem with phototherapy is, it can make it worse! it’s a chance you have to take. If you are able to take a (steel cut) pure oatmeal bath, it might ease the itch for a while. Like others have suggested, you need to see a dermatologist to find out the root of the puritis. In Canada, I have a team of specialists that work together to come up with the best solutions for me. I have a lot of disabilities including Hep-C and insulin dependant diabetes. I’m underweight as well. So ask to be referred to a dermatologist. I wish you all the best for the coming New Year❣️🇨🇦

I would ask to be referred to a haematologist and have your bloods checked.

I was referred and was asked if I had the symptoms you describe.

Especially if you have any raised lymph glands.

Regards

I too had severe itching and both my GP and dermatologist said it's just my eczema. My GP said my liver tests weren't bad. Finally, my GP sent me for blood work, checking for AMA's (as GrittyReads suggests). That's when my PBC was diagnosed. Do insist on it.

At risk of being redundant... Try taking measures to PREVENT the itching*.

Milk Thistle capsules.

Alpa Lipoic Acid capsules.

Unsweetened almond milk.

Less than 900 mg. Of sodium a day.

(If you continue to itch try Gold Bond lotion w/ c. Oatmeal.)

Vitamin D also seems to help me.

Consult a legitimate holistic therapist- at the very least a well versed employee of a health food store-

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