so what DO you do for the itch?

Friends..until the other night, the itch had alluded me and I was very, very grateful. Now, for the past two nights. my skin has been tingly, and prickly. It's not terrible but I am worried that the itch is "coming" and I want to be prepared. Is it all over, or localized? What medications have worked?

Thank you for any information!

13 Replies

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  • Hello JennyCville.

    For me the itch just started as that 6 years ago now. (I was diagnosed with PBC 9 months later.)

    Back during 2010 it was a case of itching almost all round the clock. After starting urso Dec 2010 over time it altered and for probably the past 2 years it has been confined to late at night and during what should be the hours of sleep.

    Mine starts with a prickly feeling during the evening. I liken it to being rubbed with nettles or being attacked by wasps, the only way myself I can really explain it. Sometimes as others have said I occasionally feel like I've something moving under the skin. There is no visible marks at the time.

    My theory is that the itch is supposed to be due to used bile in the system that isn't broken down as it is normally and we itch any place on the body due to it circulating in the bloodstream. As horrible as it is the itch is due to used bile seeping out through the skin, a sort of secondary defense due to them being toxic. Given this doubtful once we start itch as to whether we can really get rid of it as we need to re-fuel out bodies to live and in doing so need bile for the process. I think that is why in my case now I itch later at night, after eating and drinking liquids throughout the day. I once read in an older child's book that the liver is at its busiest around 2a.m. If so in my case it's not that ideal when I am spending time awake during the early hours of the morning unable to sleep due to having the itch.

    So yes the itch can be any place on the body. I know during the day I can find myself feeling prickly where you arm bends at the elbow, the inner part. I have found that where the joints are on the body, any restrictions (ie squatting down and having the knees bent) to the blood flow there tends to make me feel prickly.

    I have over the last 5 years since diagnosis tried to shuffle my diet to no avail and the only time I found I didn't encounter the itch for a couple days was when I was going through a bit of a down patch (last time 2 years ago) and stayed in bed of a Sunday and didn't have anything to eat and just some water and no urso. I reckon that was due to having nothing to digest but we cannot live like that.

    I've not resorted to asking for any medications as yet as I think I'd have to reach a state where I do feel I should. The itch can be intolerable at odd times but I tend to find I can tolerate it more than not. The first line of attack for the itch tends to be colestryamine (or brand name Questran) but that apparently comes with its own side effects (diarrhoea is one).

    I find bathing early morning feels better than at night. I have used Epsom Salts in the bath over the last 5 years at times as it is supposed to be good at helping toxins seep out of the skin so if so it might help in PBC. It is also said to be good for aching and tired muscles. Being cool if possible I find tends to be one of the better ways of holding back the itch I find.

  • I never knew the itching could be due to PBC...I don't have the diagnosis yet just the slightly elevated AMAs, abnormal LFTs, fatigue and I guess itching. I always thought it was just dry skin or allergies to my dogs or environmental things, but maybe it IS PBC.

    I have an MRI in a couple weeks to look at my liver. I've had other imaging done that saw a non-alcholic fatty liver. My recent upper endoscopic ultrasound saw an enlarged left lobe with diffuse echogenic. Doc wasn't sure if it was a fatty liver or something else, hence the MRI in a couple weeks.

  • hello808~I'm so glad we have this community. The days and months leading up to diagnosis can be so frightening...we are lucky to have the support here. I love to hear from people who are living with this and THRIVING :) despite PBC.

  • Hello hello808.

    I've only ever had ultrasound pre-diagnosis of PBC (Dec 2010) but know it can show a lot involving the liver. (I saw a tv programme not long before I was diagnosed, live on air and 2 men were having their livers scanned. The specialist talked through, one man had a fatty liver and the other had cirrhosis. Not sure why some have the MRI scan as I do think that an ultrasound can show a lot that is going on. My consultant on my first appointment said he could actually make out the bile ducts and that they looked 'clear'.

    There is a condition called Non-alcoholic Fatty Liver Disease (or NAFLD for short) and there is a leaflet you can download off the British Liver Trust website (as well as various others, PBC being one too).

    Now any liver condiution can apparently cause itching, abnormal LFTs and other symptons associated with the liver. Can't say regarding the antibodies AMAs as I understand it they have to be of a certain high 'titre' (measurement) for diagnosis. I apparently had a 'high titre' and along with symptons (itching and at the time fatigue) plus elevated or abnormal LFTs that were rising (I had blood checks in the 9 months pre-diagnosis as the NHS works very slowly indeed) and that is how I was diagnosed.

  • Hi jennycville, I have had the itch for a while as this is still new to me. I have not been prescribed any urso yet still investigations apparently.

    But I have been on two tablets of citirazine antihistamine, I just want to say look out for Aveeno body cream and shower/ bath liquid, they advertise anti itch cream. I have been using the shower cream and the body lotion and it's only been two weeks and I'm not itching as much, I'm not sure if it's just chance or luck but it's the only different thing I'm doing, good luck.

  • Twinkle26~ thank you so much! I order my groceries online, and just bought the Aveeno.

  • I tried the Aveeno Twinkle26 after someone on here was using it and found that it did give them some temporary relief from the itching. Can't say it did anything for me at all. Given the itch comes from inside the body I very much doubt that creams are going to actually fully help but they can give relief for a spell. I tried E45 itch relief cream that contains urea that is supposed to be for itching but that was to no avail. I know in my wya of thinking if the itch comes from inside and it is supposed to be used bile salts leaking out through the skin pores then blocking them with creams is maybe not that great.

    I wish I could find some solution for us all but so far I've not done so.

    I know that using Epsom Salts in the bath is quite effective for awhile. I buy standard pots in the chemist but Holland & Barratt in the UK where I am sell large drums by the Eco Bath Co (in London) and they have eseential oils in them depending on which you choose. They seem to work out to be more cost effective to me than the ones you buy in tiny drums in the chemist that are manufactured for constipation.

  • Hello JennyCville,

    We have sent you a message with regards to your question about the itch.

    Best wishes

    PBC Foundation

  • Hi Jennycville...are you taking urso? I didn't have any itch until I started taking urso...so it may be linked to what peridot says about excess bile. However after taking urso for 3 months now the itch has pretty much subsided. I have been taking a herbal tincture individually made up for me by a herbalist this helps with the liver function, but I've also been prescribed Passion flower tincture by my herbalist for the itch and as soon as I started on this the itch went. Might be coincidence or it might be my body getting used to the urso.

    I also finds it doesn't help to get too warm in bed. If my arms are under the duvet I feel the prickle coming so I keep my arms outside the duvet. I also used to have a down duvet which was unbearable so switched it for a synthetic one. I did also find eating cheese triggered the prickling sensation so I try not to eat that at night.

    I hope you find something to ease your itch soon.

    Take care and best wishes

    Hilary

  • Hilary - yep, I'm on urso ~began January 11th. And my numbers are getting better, which is why the itch beginning NOW was a bit confounding...

  • I started just before Christmas and I think the itch started a few weeks later, can't quite remember but I think it was about 3 weeks. Drove me nuts and also made me feel very scared as I wasn't sure whether it was PBC making me itch or the urso. I kept thinking Christ I've got this itch forever now!! But thankfully it seems to have pretty much gone now, so that's nearly 3 months. My LFTs are also improving which means the urso is working. I've had one liver unltrasound scan which didn't show any damaged just a slightly engaged liver and I've got my next one next week. Still not seen a consultant, apparently it will be another 6 months! But in a way that's good as it means he's seen the scan and isn't worried...at least that's what I'm telling myself!

    Hopefully you'll feel better and be able to enjoy your break in Paris.

    Take care

    Hilary

  • Thank you all....you guys are the best! It's been a terrible week with the diagnosis of NASH on top of PBC and CVID. And now the itch. We are supposed to go to Paris for Spring Break and I don't want this trip to be ruined with an itchy mom.

  • I had the itch very badly wheni was pregnant and first diagnosed .it eased off once id had my baby but is now returning with avengence.hd us now 16! But in the meantime ivd had bits of itching.when was really bad it was in my feet hands and head then spread all over.questran is prescribed for some people.ive not had it yet.keeping cool helps.dont wear socks if your feet are itchy.use a lightweight duvet so uou dont get hot.wear loose clothes if possible and natural fibres.antihistamine helps a little but not for itch just for slight drowziness...so take at night.contact docs and get some questran...im going to !!!good luck.p.s.try taking it really quietly for a week that may help.

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