My first post - itching is driving me insane

[Lightbulbmoment]

Hi everybody - I am a 56 year old woman living in the UK, I was diagnosed with liver cirrhosis about 3 years ago following on from NAFLD. Currently my cirrhosis is compensated and early stage.

I’m learning to live with the constant fatigue and exhaustion. However, the itching I’ve been having for the last 5 years or so ( since before my diagnosis) is now starting to really drag me down. I’m aware that compared to others on here, I’m lucky, but nonetheless it’s affecting my quality of life, especially since it seems to have increased in frequency.

I often have itching 3/4 times a week. Almost always in the evenings/ at night. Mainly I have itching on my feet, legs, back and hands. When it’s particularly bad I get it around my hairline and scalp. It lasts for 5-6 hours, in the mornings I am exhausted having spent literally the whole night scratching. Anti histamines help occasionally, but usually not. Calamine lotion gives about 5 minutes relief. It’s embarrassing if I have visitors in the evenings, or if I go out somewhere, as the urge to scratch is overwhelming. A small compensation is that severity of itching is not apparently a reflection of amount of liver damage.

Having done some research online I discovered the following drugs which can be given to relieve itching : naltrexone, rifampicin, colestyramine. Does anybody have experience of any of these? Will a GP prescribe readily? Whenever I have asked I have never been offered anything other than told to try anti histamines.

I’m desperate to find something, 5 years of this is enough!

Many thanks for reading, and good luck to all those struggling to live with liver disease. This forum is a godsend.

[AyrshireK]

Hi Lightbulbmoment, are you under the care of a liver specialist? There should be something they can prescribe to try and ease your itching symptoms. I've heard of people with cirrhosis being prescribe ursodeoxycholic acid which is a medication often prescribed to people with primary biliary cholangitis. The pruritis/itching is usually to do with a build up of bilirubin and urso helps to deal with that. Have you had recent LFT's?

Katie

[Lightbulbmoment in reply to AyrshireK]

Hi Katie thanks for your reply. Yes I’ve had recent tests and have now started to keep copies of the printout, but tbh I’m not sure what I should be looking for which might be relevant to my itching. I’ve just recently been referred to a liver specialist but the appointment is next month.

I’ve seen people refer to urso, never knew what it meant but presumably is the ursodeoxycholic acid you mention.

Is the itching also common to cirrhosis patients?

[AyrshireK in reply to Lightbulbmoment]

In some people with cirrhosis - itching is common especially when bilirubin level is raised. Urso is indeed the ursodeoxycholic acid which I mentioned.

I hope you are receiving appropriate monitoring of your liver disease - with a diagnosis of cirrhosis you should be having 6 monthly ultrasound scans, regular bloods and careful monitoring to ensure your compensated cirrhosis is remaining that way.

Fingers crossed your specialist appointment next month sheds some light on things and you get some relief from the itching.

Take a list of your symptoms with you together with a note of any medications you are on plus any questions you want to ask the specialist. You need to know you are being properly cared for.

Katie

[O13B in reply to Lightbulbmoment]

Hi I suffer the same, I take my antihistamine daily then I turn the heating down and stay cool before bed and that seems help! About your bloods (you don’t have to be a doctor!) any result with a * is out of range! The numbers in brackets eg bilirubin 0.0-22.0, tells you if it’s high or low. Good luck

[Lightbulbmoment in reply to O13B]

Thank you - learning loads from here!!

[Andiball in reply to Lightbulbmoment]

Very much so in my case

[Lightbulbmoment]

Thanks for this very sensible advice Katie. I am getting the 6 monthly bloods and ultra sound, but only because I ask for them each time. It will be good to finally have a liver specialist assigned. Although there are no hospitals with Dedicated liver units in my area which is a shame...

[Hidden in reply to Lightbulbmoment]

Hi

I suffered itching and that its only trial and error till you find a way of getting some relief

I don't know where you are but can you get a referral to Birmingham QE2, I travel there a fair distance but it is worth it they a real liver spacialists

[Lightbulbmoment in reply to Hidden]

Hi David - thanks for replying. I live in West Sussex but would be willing to travel. I don’t know who to ask though, I suppose I should start by asking my uninterested GP 😏

[Hidden in reply to Lightbulbmoment]

That's where to start but there are hospitals in London that specialise as well which may be closer. Its The Royal Free.

Be aware if they take you on you have to go a lot

[Andiball in reply to Hidden]

Addenbrooks has a specialist centre 2

[Lightbulbmoment in reply to Andiball]

Is that in Cambridge? Quite a way from me. Is that where you go?

[Andiball in reply to Lightbulbmoment]

Yes, I live in norwich, im getting close to needing a transplant and thats the nearest specialist unit to me, I was diagnosed in 07 but id been under the N&N for about 4 yrs b4 that, good luck x

[AyrshireK]

My hubby was diagnosed with cirrhosis in April 2012 and was under a gastroenterology consultant locally. In 2013 he was referred to Edinburgh for t/p clinic and they took over his liver care. He was listed for t/p in June 2014 but delisted May 2015 - he remains under the care of a liver specialist in Edinburgh together alternated with visits to local doctor too. It is worth the 200 mile round trip to see the best specialists (we often take our caravan over and stop overnight) as hubby can't manage the return trip in one go.

Best wishes,

Katie

[Lightbulbmoment]

Sorry to hear about your husband. It’s great though, that you clearly take an interest and are very knowledgeable about his condition. I am interested to know why they would list but then delist somebody for a transplant? Also, from what you said about a 200 mile trip, does that mean it’s possible to be under the care of a specialist out of the area in which you live, or in your case is this just because your husband was referred for a transplant? I would gladly travel to see a better qualified specialist if it was an option.

[AyrshireK in reply to Lightbulbmoment]

Hubby was assessed for transplant and listed but over coming months his blood results stabilised and one of the key criteria for listing is a score called the UKELD score which is a calculation based on blood results and therefore he no longer meets the criteria for tranplant although his symptoms remain the same.

Even though he has been delisted he remains under the care of a specialist in Edinburgh - as they are far better qualified than the local gastroenterologist who has no specialism in the liver. We asked the liver specialist at Edinburgh to her to keep him on her books even though he was no longer listed for transplant. I am not sure what the situation is nationwide but you are entitled to a 2nd opinion or referral to a proper specialist for your condition.

Katie

[O13B in reply to Lightbulbmoment]

Yes you can be referred to any liver unit. X

[Lightbulbmoment in reply to O13B]

Hi O31B - how do you get referred to a liver unit? I think my appointment is just going to be at one of the local hospitals which doesn’t have a liver unit...

[O13B in reply to Lightbulbmoment]

Where do you live? I’ll find your nearest liver unit

[Lightbulbmoment in reply to O13B]

Really? That’s so kind... I live in West Sussex - village called Rustington.

[O13B in reply to Lightbulbmoment]

I went to boarding school in Littlehamton! Your liver unit is at Worthing( Dr Charlotte Ford or Dr Sam Thomson have both worked in liver transplant units in London) they also have Mr Roberto Lauri who has 9 years experience in liver surgery including transportation! So you’re lucky. The nearest liver transplant unit is the Royal Free, London (where I did my nurse training)

Good luck

[Lightbulbmoment in reply to O13B]

That is fantastic news! Worthing is down the road! How on earth did you find out all that info!? Thank you so much! X

[O13B in reply to Lightbulbmoment]

Whenever you’re looking for any medical information put nhs then your question! I put nhs nearest liver unit to Worthing, West Sussex (as I New that was a town near you!) easy xx

[Lightbulbmoment in reply to O13B]

Genius! And what a coincidence - re Littlehampton! Thanks again for being so helpful...

[O13B in reply to Lightbulbmoment]

I always hoped I’d find something useful about that dreadful place!Lol. Everyone here will try to help, it was my turn today! Contact me anytime if I can help again. Now demand you see one of those to doctors and take a list of all your questions and your current medication. Good luck xx

[Lightbulbmoment in reply to O13B]

I have an appointment to see my GP today , I am going to ask for some questran..also am going to call NHS choices to cancel my referral to Horsham Hospital ( which has a shorter waiting list) to Worthing. Thanks to everyone for the helpful suggestions. You are a great bunch! Xxx

[Lightbulbmoment in reply to O13B]

Ps Littlehampton is indeed a bit grim, though they have spent a bit of money in recent years doing up the harbour area.

[O13B in reply to Lightbulbmoment]

I heard it had been posted up! I was at school there in 1971! It was really awful then

Glad you’re going to Worthing it’s better to wait a bit longer to get the best care( but ask if the drs from Worthing do out reach clinics at Horsham before you cancel that apt!)

[jojokarak]

Hiya I was prescribed questran powder ask your GP to see if it's suitable for you... Also you can buy a cooling spray from boots if you just explain what the problem is the pharmacist will point you in the right direction it worked wonders for me ... Hope you find something which works for you x

[Lightbulbmoment in reply to jojokarak]

Thank you for this Jojokarak - I am willing to try everything and anything! Did the questran powder work for you?

[jojokarak in reply to Lightbulbmoment]

It did for a time 😊

[JTay]

My wife suffered badly with itching, and one day I bought her a humidifier which helped a lot. Especially if you have central heating which tends to make the air very dry. They are about £30 and well worth a go.

Stephen

[Lightbulbmoment in reply to JTay]

Wow that’s interesting! I’ve used a dehumidifier many times in the past but never a humidifier. Was this idea recommended to you or did you just find out by chance?

[JTay in reply to Lightbulbmoment]

Hi, it was just an idea of mine, as her skin was so dry. She liked the cooling effect too. They are quiet in operation and she said it definitely made an improvement. The one we chose was quiet in operation so we put the by the bedside and ran all night.

[Ginnymax]

Hi . I have pbc which has know unfortunately gone on to cirrhosis I take urso but I would recommend you speak to your consultant abt taking questrant sachets I take two a day and they work great for my itch ! If I forget to take them I know about it ! Good luck. X

[Lightbulbmoment in reply to Ginnymax]

So when you say sachets, I presume you mix with water and drink it? I somehow imagined you put it on your body like talc!! I wonder if my GP can prescribe this or if it has to be the consultant...

[Ginnymax in reply to Lightbulbmoment]

Hi . Yes speak to your gp yes it's powder I mix mine with juice or you can even mix it in soup but I don't like that idea !! It really does work for me my itch was terrible I had suffered for so long it really was making me depressed, some people take more than two sachets a day but I'm fine on two. I take mine an hour before I go to bed .

[Lightbulbmoment in reply to Ginnymax]

How long before it takes effect once you start taking it? I don’t care how bad it tastes, just to get a decent nights sleep! 😩 Glad to hear your itching is a thing of the past! What a relief!

[Ginnymax in reply to Lightbulbmoment]

Hi . I saw the difference in a few days it was amazing being able to sleep . Good luck please try it !

[Auds5]

Hi Lightbulbmoment

I was diagnosed with PBC in 2015 and AIH in 2017 and suffered from dreadful itching all over my body including my scalp every day. I suffered with this for over 2 years trying many things like different antihistamines, steroid creams, lotions and Colestyramine. But none of them cured the intense itch. I was prescribed Rifampicin in 2015 and still take it and now I only get a rare flare up when I overdo things.

You should mention it to your Consultant and insist they prescribe you something. You have endured this enough and I know only too well how the itch affects every day life and your skin.

People often said to me it's only an itch but it affected my sleep and confidence because I was always scratching.

Hope this is of help.

Auds5

[Lightbulbmoment in reply to Auds5]

Hi Auds5, thanks for replying- it sounds like you had it pretty bad too, thank god you eventually found something that works. I can’t remember what it’s like not to get this itching. I am starting a course next week and am worried that I will be nodding off due to lack of sleep!

[Auds5 in reply to Lightbulbmoment]

Definitely see your GP or Consultant because there is things they can try. Its just a matter of seeing what works for you. All the best with the course. Take care.

Auds5

[Hidden]

Hi

So sorry that you are going through this. My Dr prescribed me fexofenadine 180 mg, it works well for me!! See if your Dr will prescribe it for you. Take care Lynne

[Kh1816]

Questran light (colesyrtamine) completely removed that itching ( like being wrapped in fibreglass) while I was subsequently treated for a liver disease. . I don't know whether you have been to your GP but at the very least you need blood tests. Itching is often symptomatic of raised biliburin levels in the blood.

[Lightbulbmoment in reply to Kh1816]

Hi there, yes that is a good description of how it feels, almost like your skin is crawling. Really debilitating. Yes I do have regular blood tests and since the last one I have started asking for the print out of the results as I need to learn to understand them and compare...x

[Hidden]

Hi Lightbulbmoment,

I like your site name.

My husband had severe itching before he went into liver failure and has had some since. His doctors gave him some cream - don't remember what- but we also found that some over the counter lotions made for itching helped - Aveda and Gold Bond for itching helped. We are in the U.S. Sarna was another suggestion. If you go with something could you call the doctor's office and see if they have any suggestions, even though you haven't seen him yet the office might be able to suggest something non-prescription that might help.

Best wishes,

Mary

[Lightbulbmoment in reply to Hidden]

Hi Mary

Thanks for replying to my post. How is your husband doing? Is he due to get a transplant?

I saw the GP yesterday and told him I wanted to try questran as lots of people on here said it helped. I now have a large stash and took my first dose yesterday. Fingers x’d!

What part of the US are you?

Regards

Julie

[Hidden in reply to Lightbulbmoment]

Hi Julie,

My husband is doing pretty well, according to his liver doctor no need for a transplant, at least at this point. The liver doctor is also the head of the transplant dept at the University of Minnesota Medical Center, so we go there for his every 6 months check up. Right now according to the doc the check ups are to make sure he doesn't develop liver cancer. The hubby does have some slight HE and takes lactulose for that and other med for nerve sheath issues - we live in Minnesota.

I really hope the questran helps you. My husband has alpha lipoic acid 600 mg per day, but that was prescribed more for nerve sheath issues he has in his hands and feet, I think.

Best wishes,

Mary

[Couch1]

Works for me-

PLEASE* consider the following; reduce sodium to less than be 900 mg. a day. (I reduced my potassium intake as well.)

Take Alpha Lipoic Acid and Milk Thistle capsules, I take more than the suggested amount. Ask your doctor-

The Gold Bond lotion with colloidal oatmeal* really helps.

Obviously, consult your physician. This worked wonders for me. 🤗

[Lightbulbmoment in reply to Couch1]

Hi Couch1 Thanks for your reply - how do you measure 900mg per day of sodium? (Is that salt?) I’ve not heard of Alpha Lipoic Acid, can you buy it over the counter? I do already take Silymarin capsules which is an extract from the seeds of milk thistle, which are higher in strength of the active ingredient. I’ve started on questran now, just one sachet daily for just over a week, but I’ve still had major itching episodes and am actually itching as I write this! Maybe need to give it longer before upping dose to 2 sachets...

Do you have cirrhosis?

[Couch1]

Hi light bulb, yes I have end-stage cirrhosis with ascites. what a horrible term. Just about anything anything in life could be considered end-stage. Tsk... Feeling better. The Alpha Lipoic Acid and Milk Thistle definitely help me. I take them preventatively. Local health food store, or have your doctor prescribe them if insurance is not an issue. (Loose, breathable clothing is underrated, sooooo good)

[GrannyDoll61]

Dream cream from lush really helps