Crazy itch: Hello, This is probably a... - British Liver Trust

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Crazy itch

Casinobo profile image
20 Replies

Hello,

This is probably a very stupid question, but here goes. What part of the body do you itch at with liver disease? All over? Certain areas? My legs from the knees down, itch so bad ,sometimes,I’m ready to hack them off!😀I don’t have any idea if it is even related to my liver issues.

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Casinobo profile image
Casinobo
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20 Replies
jessiejakes profile image
jessiejakes

Hi I was in hospital 2 and half weeks my liver flared up suddenly and I went jaudinced and my skin was itching like mad all over

alfredthegreat profile image
alfredthegreat

Hi, my itching was pretty much all over and at different times. The worst was my lower legs and ankles and top of my feet, followed closely by my back. Sometimes I itched a lot worse than others. Always worse when warm in bed, so I used to stick my legs and arms out from under the duvet to bring down my body temperature and even resorted to putting bath towels in a plastic bag in the freezer to put over me in the night when the itching was at it's worst, that sometimes helped for a while until my body temp rose again. I'm afraid that it's quite a common symptom of liver disease. There a some on here that have had medication for it. Hopefully someone will post to tell you what the medication is called. All the best. Alf

jessiejakes profile image
jessiejakes in reply toalfredthegreat

Hi as soon as they put me on 6 steroids a day the itching stopped within a day and my temperature also came down been out of hospital 2 weeks tomorrow had ultrasound CT with dye and MRI and awaiting results of liver diospy but they think it's automunine disease or hepititus still awaiting all the results but they let me out as my bilirubine came down to 83 and my ALT 669 and as 1717 on admission in A&E .having weekly blood tests and awaiting to see lead consultant specality Hepatology I'm a tea drinker and don't drink any alcohol.

Huggy7614 profile image
Huggy7614

Hi, for me it was a specific patch on my lower right shin, occasionally on my left one!!

It had been itchy for years Pre diagnosis, and I never thought about it. I’ve worn away the skin there and it seems permanently marked now!!

Post transplant it stopped instantly!! Although hairs are starting to grow back on my legs, not so much on the patch!! Andy.

Casinobo profile image
Casinobo

So many things can cause itchy skin. Trying to find out why is like trying to diagnose liver disease. I’m also a border diabetic, high cholesterol, high blood pressure, fatty liver, I’m a mess. Lol😀Thank God for modern medicine or I would be a statistic!

Popel profile image
Popel

Hi there . with me it was my calf’s and could of scratched till they bled and yes I had cirrosis

Hi

I itch all over but I take fexofenadine 180 mg , this has made it bearable. Please take care of yourself Lynne xxxx

Casinobo profile image
Casinobo in reply to

Thank you Lynne! I’m sort of a Chicken Hawk. I’m fine for now😀

in reply to

Hi there Lynne can you check out PJMars a newcomer to the site with itchy ness. Maybe your reply to Popel may help him. Hope you do not mind my asking? Love Jaycee

in reply to

I will do, thank you. Love and hugs Lynne

Good

Shezza123 profile image
Shezza123

Hi I can totally feel your irritation, the itching was the main problem for me ,I was itching all over which was affecting my sleep too .. I also used to itch till I bled and bruised terrible .. since starting my medication u acid the itching only occurs occasionally.. hope they sort you out ..

Maxey666 profile image
Maxey666

Hi

I was diagnosed with cirrhosis 18 months ago. Back then my itching was so intense especially my ankles and feet. I remember sitting watching telly with a foot each in a bucket of icy water. My torso was also bad. Nowadays strangely I hardly ever itch. I'm not sure if its anything to do with the ludicrous amount of medication I'm currently taking.

Bbsmom profile image
Bbsmom

I have PBC, and itching drives me insane, with me it is feet, legs, back and abdomen ....constant itch, feel like tearing your skin apart but of course that’s the worse thing you can do. After urso Acid, Rafampicin, colesevalam and finally Naltrexone I have been referred for plasmapheresis at Belfast City Hosp which, after speaking to the consultant haematologist, I am hopeful will at least lessen the itch and tide me over to transplant, I’ve been placed on the list since Nov 2018 for the itch due to its severity. Hope you get some relief from it, try tepid water on a facecloth during the night, that’s when i was at my worst , seemed to me that the heat in bed and the weight of the bedclothes always made the itch worse. It’s by far my worst symptom and I quite literally “feel your pain”

Xx

Casinobo profile image
Casinobo in reply toBbsmom

Wow! So sorry your going through that. Sounds dreadful. I hope they sort you out much sooner than later. My itch is nowhere near that severe. Mine comes and goes and is by no means a daily incident. It is also limited to my calf’s and feet. It’s very dry where I live. I looked up causes for itching and the reasons are all over the place. Without a liver actual diagnosis, not sure if it has anything to do with me. What is PBC ? I’ve seen the term just not sure what it stands for. Good luck to you Bbsmom.

Bbsmom profile image
Bbsmom in reply toCasinobo

Pbc is Primary Biliary Cirrhosis or Cholangitis as it’s called now to try and remove the “stigma” surrounding the word Cirrhosis. It’s an auto immune disease, whereby the body basically attacks the bile ducts in the liver causing them to stop working and become almost solidified and causing liver failure, in some cases it does not always end in liver transplant being needed but I’m one of the unfortunate ones for whom it does. ..so glad to hear your itch isn’t there all the time, long may that last and thanks for your good luck wishes xxx

Owlie profile image
Owlie

Yep lower legs and back terribly

Highflying54 profile image
Highflying54

Hi

I am thankfully on the mend now as my jaundice was a liver injury caused by antibiotics. The itching was the most depressing aspect of the illness. I itched all over (even scalp and eyes) I was prescribed Colestyramine which was disgusting and then colestagel which was easier to take. Not sure that either worked. I also took Piriton to help me sleep as much as anything. The best topical treatment I found was Dermacool. Hope some of this reply helps. I really feel your pain!

Cookieleel profile image
Cookieleel in reply toHighflying54

Hi my name is Kathy and my hubby has cirrhosis of the liver stage 4 and a shunt in his liver! He itches non stop all the time! My question to you is what strength deracool did you purchase! Thanks in advance, the itching drives him crazy!

Highflying54 profile image
Highflying54 in reply toCookieleel

Hi Kathy

I am so sorry to hear about your husband's condition. The itching nearly drove me crazy - I was so depressed! I used both 1% and 2% (I didn't notice any difference between them tbh). It is costly so best to try and get it on prescription, although you can buy a small tube to try it first. It does make you feel very cold once you have used it - I used to wrap myself n my dressing gown and get under the bedclothes once I had applied it. The relief was fairly short lived but much longer than any of the other creams I used and allowed me some sleep. I did also take Piriton as it helped me sleep as well. I do hope this helps. There seems to be little help available for the itching and it's a case of trying different approaches until there is one that works best for you. Good luck to you and your husband.

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