Terribly itchy skin

[Disabilityhearing]

My name is Michelle I am 44 years old and in stage 4 liver disease. I itch like crazy on my arms and shoulders. My doctor prescribed me cholestrymine which use to work for me but now doesn't. The itching is getting worse. Does this mean mybliver may be shutting down and my time is near. Very scared.

[RodeoJoe]

Well stage 4 is the last stage of liver disease, so there are going to be side effects, Itching is one of them. Do you have ascites or jaundice?

Have you had a liver transplant assessment or even put on the transplant list?

If not you should be getting regular blood tests to see how bad the liver disease has progressed, and at some point assessed for transplant.

If you mean "time is near" for transplant then perhaps, but the professionals will determine exactly when. If you mean "time is near" for death then I really don't think so. It can be a bit of a journey, but I'm proof that you can come out the other side in pretty good health.

It's essential to remain positive, and take it step by step.

If you have any more questions or just need some support, you've found the right place to come.

[RodeoJoe in reply to RodeoJoe]

I just read your previous posts. Did you manage to give up the alcohol?

[Disabilityhearing in reply to RodeoJoe]

Yes I had a year sobriety and my husband passed away in January and I drank a little here and there bit not drinking anymore

[Disabilityhearing in reply to RodeoJoe]

Thank-you so much. I've been going pretty regular for blood work nd my liver function test were good the last time. I just did more blood work. Haven't gotten the results on that yet. No ascites or jaundice just extreme fatigue and this terrible itch. I appreciate the positive information.

[Gh88boots in reply to RodeoJoe]

My ALT levels have been high for 3 yrs now. Doctor is sending me for a “liver panel”? And hepatitis test! SCARED to death to find something wrong! I’m 50 and for past 10 yrs, a pretty heavy drinker 😢 To be TOTALLY honest, (PLEASE, bashers, I DONT need a lecture! I KNOW I shouldn’t, just keeping it honest), I just want to drink and forget about it 😢 Once again, I KNOW right from wrong, but can ANYONE, ( without fussing) give me insight of what, apart from alcohol, could cause only my ATL’s to be high? Thank you in advance for the ones who help. Anyone wanting to call me stupid, you will not get anything in return so go for it if you just wanna belittled someone🙉 Extremely fatigued and palms itch like CRAZY, especially at night lying down!??

[Anya74]

Michelle, I don't think,it means your time is near. My husband has been driven

mad by an itchy skin for several years.

[Hidden]

Hello 😘😘😘 well done for giving up alcohol 👏👏

My hubby has 'itching' every now and then - I think it is bilirubin that does it ?? (May be wrong) also before transplant he used to have many 'itching' weeks which we worked out coincided with a rise in toxins !!! As he also comes out in spots at the same time !!! He did have cholestyramine before and piriton 😓😓

Check that your bowels are ok and your going regularly and perhaps ask GP what bilirubin is doing ??? It doesn't give you a cure but might explain 'why' 😘😘😘😘😘😘😘

[Bolly]

Try not to focus on "staging" your liver damage. Who told you Stage 4 by the way, is this from a biopsy result? Doctors use a scoring system to assess the level of damage and the speed of the damage. In the UK they generally use a system called Ishak but it's different in the USA. Are you in the UK or elsewhere.

If your "staging" is from a biopsy report then Stage 4 is NOT end stage. Ishak staging scores go from1 to 6. 1 is no damage and 6 is cirrhosis. Someone at Stage 4 has fibrosis.

There is a grading system to add to the "stage". The numbers here go up to 18.

The medicine you mention is given when there is too much cholesterol in the blood and it's causing a blockage in the gallbladder. What advice have you been given on lowering your cholesterol through better diet etc?

[RodeoJoe in reply to Bolly]

Hopefully you are right but the convention I know of is that stage 4 is definitely cirrhosis.

nhs.uk/conditions/fatty-liv...

[Bolly in reply to RodeoJoe]

Yes you are right Rodeojoe. Stage 4 is cirrhosis for NAFLD. Has Michelle been diagnosed with NAFLD? She mentions drinking in the past so my guess is the docs think her liver damage is from alcohol. NA stands for 'non-alcoholic" but she could have Fattty Liver from the alcohol? Stage 4 on my biopsy report is fibrosis, that's a Stage 4 from a liver biopsy for viral hepatitis combined with AIH. I suppose it depends on who told Michelle she was Stage 4, what type of liver disease she has, and if it has been staged from a biopsy, fibroscan or bloods.

[RodeoJoe]

You're in good company here, most of us have been through, going through or have a loved one going through exactly the same as you.

Like others have said the itching is pretty common, and of course it's worrying but doesn't mean your time is up.

Just stay off the alcohol, I can't emphasise that enough, and if you smoke give that up too.

I'm talking from experience as I was diagnosed with cirrhosis in my early 20's. I was living in London, going out all the time and never gave up drinking. Although my cirrhosis wasn't caused by alcohol I was really grilled about it prior to and during the assessment. Fortunately I had given up drinking and smoking about a year before because I was getting really ill. But they still gave me a really tough time about it.

[cityman62]

I think it's a cross we all bear here to some extent,with me its lower limbs and feet in bed,makes me terrifically popular with my beloved....I find it comes and goes,I find as well when I itch my arms which are pretty much always damaged from work,that I bleed ridiculously easy-(low platelet count),I wouldn't worry too much unless it's constant and you are actually wounding yourself by doing it.Regards Cityman.

[Estiebargle]

Hang in there Michelle,

I sure hope you find relief. That sounds frustrating.

[findasolution]

I understand that the Cholestyromine (a.k.a. Questran) you mention is often prescribed to relieve itching in patients with liver disease although if it is PBC it is more likely that the bile acid Ursodeoxycholic (URSO) is prescribed instead as that works more directly on the gall bladder as well as the bile ducts.

Shortly after initial diagnosis of cirrhosis I suffered from bad itching and the liver specialist prescribed URSO which he said sometimes helped relieve itching in liver diseases other that PBC which I did not have. I stayed with it for a while but then asked if I could try out Cholestyromine which I did. Unfortunately that seemed to make the itching worse so I went back onto URSO and although it took a couple of weeks to start acting it eventually did so and I have now been taking it for several months with very few, and then only minor, occurrences of itching.

If you haven't already tried URSO you may wish to consider asking your doctors whether it is right for you and worth a try.

As I say it works for me and is much easier to take than Cholestyromine. However as we all seem to react differently to medications it may not be for you

Regards

[Liverlover]

Hi, I went on the transplant list 6 months ago. Have had unpleasant itching for 4 years, that was one symptom of my cirrhosis. I certainly don't think it means the end. Even without transplant I think I would keep going for quite a while yet, hopefully many years. I was fit and quite young when diagnosed. I agree with much of what has been written by the others who have replied. Personally Urso and other itch remedies have done nothing for me and so I put up with it whilst hoping for better after transplant. In the meantime I have good and bad days, with the itching always more of a problem at night. Often it's a relief when the sun comes up and another day begins! Stay positive and take good care.