Symptoms getting worse

I was doing well for a while ... but the last month or so my symptoms have slowly been getting worse ... now the itching is horrible and my skin burns from scratching , the nausea can get horrible and I'm so very tired all the time ...

hadn't done my bile acid test (bile salts) for a few months cause I'd been feeling good (no itching). But I got it tested this last test (I get blood drawn every 2 weeks). My bile acid level is 4.5 times the high normal. No wonder I'm so itchy ... and nauseous. I'm scared and need to go back to my specialist even though I just saw her last week. I didn't have these results when I saw her ...

I've been taking gravol for the nausea but the itching I need something for - anyone use a cream that works?

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34 Replies

  • Sorry to hear your worse. :( I'm new st this...but I didn't think creams worked since it kind of under the skin. I'm sure someone with more experience can correct me.

    Do you take URSO or any form of Questan? What is your course of treatment? That's a pretty high wonder you're miserable.

    My last bile test was 3.71 and couldn't hardly stand the itch. Luckily my Prevalite is working and my itch is much better. I'm even able to sleep at night where before I slept maybe three 30 minute blocks all night.

    You should see your doctor to figure out why your bile is so high after it was better.

  • My bile acid is up to 28.8 now

    The itch is inside and I know nothing helps on the skin unfortunately but I was hoping :)

  • Different subject- do you take any sleeping pills. I'm on Zopliclone but they will only give me 30 a mth. Means I have to try and sleep with a half tablet to help with sleepless nights when I take 1 whole or one and a half. Lots of sleepless nights 'cause half isn't really enough.

  • Hi Becca75

    Sorry to read that your symptoms are getting worse. The so called itch of PBC really does drag a person down. Like marty102 I take Questran Light (cholestyramine). But unlike Marty102 and her Prevalite the cholestyramine that I take has only lessened the misery. If you are started on cholestyramine then unfortunately you will need more patience as it does take a while to fully function.

    I use a 2% menthol cream by Arjun which is only a temporary fix, I also use ice but I am not really sure if it is that good for me. The following is a link for a UK company but I am wondering if you are in the USA - a quick google will find something more local for you.

    How are your vitamin levels, PBC means that we will find it difficult to get vitamins A D E and K. Perhaps you could speak to the specialist when you see them.

    best wishes

    let us know how you get on :-)

  • Thx ... I'm in Canada 🇨🇦... I need to see her again so I'll mention those ...

  • Becca75. Sorry to hear to battle at the moment. You have my sympathy, I know the feeling. I think the bile ducts are very inflamed when we itch that extra. I have to be very careful what I eat. No gluten, no fatty foods. Bath in Epsom Salts. Creams, without perfume, just give temporarily relief. I also find the more regular my stools are, the more tolerable the itching is. Luckily I do not get nauseous and very seldom have trouble with fatigue, for which I am grateful. I feel for you.

  • Thx

  • Hi! Becca

    I got relief from itching by taking Questran, In fact it stopped my itching which was so bad in the morning my sheets had patches of blood over them where I had scratched while I was asleep. Questran does not improve this problem for many sufferers but it certainly helped me.

  • Thank you ....

  • Try an antihistamine and go back to your doctor. Maybe you need to be on a higher dose of Urso?

  • I'm on 1500 mg/day but it doesn't seem to be working as great as it did in the beginning

  • Hello Becca75.

    I wish we all had that magic wand to rid ourselves of this damn itch, I know the situation, been itching almost 7yrs myself now.

    As far as I have discovered there's really no cream out there that can rid the itch but only give a very short temporary relief.

    I find being cool is by far the best option.

    I've not yet had cause to resort to any meds to see if it will give relief from itching. First line is apparently Questran (colestryamine) but I've not got it as it is said to be hit and miss, works for some, not others. If it was cast that it worked for everyone I'd have got it like a shot.

    Have you looked at a leaflet on diet on British Liver Trust at all? I was reading through it last night. I have in the past but decided to read it as I've encountered heartburn a time or two in the last few months.

    If you check out their site, look on the 'download publications' section and you can see it there. If you scroll through the pages then not far from the end is a good section on PBC. I have known pretty much all along that if bile is needed for fat break down then it is more than likely better on a low fat diet. I seem to have it in my head that perhaps it might help to lessen the itching somewhat.

    (Just click on the leaflet picture, it'll bring it up.)

  • Being a bit stupid but what letters are used to denote bile salts ? I've never seen mine and stage 4 going for part 1 transplant list assessment unless it's just a different name?

    Things to help with itch... Keeping cool stick with cotton... That's what I find.some people take questran which helps for some. I take antihistamine it doesn't stop itch just takes edge off.sorry to say no perfect cure.

    For the nausea eat little and often especially if you are being active.

    My symptoms are very similar so feel for wishes cazer.p.s.Try not to be scared...The levels can go up and down like a yo yo something like a cold etc can make things worse.

  • The test is called Bile Acid ...

  • I'm in England I'm not sure if they test for bile acids...I'm not sure why not !!!

  • Here in Canada ... it's an extra test - and I have to pay 45.00 each time I get it tested ... it's not one of the tears that's run every two weeks unless I opt for it ... it should be with PBC. It explains a lot - because clearly my liver is having a harder time getting rid of the bile therefore my symptoms are worse ...

  • That's very interesting...I'm sure they don't do it here...It does not make much sense... Unless it's under a different name? Does anyone in England know ???

    They tend to use bilirubin as a progression of disease investor and the ukeld score, hope your symptoms calm wishes cazer.xx

  • I get my bilirubin tested every two weeks along with the regular liver tests ( my bilirubin is 10)

  • What's the ukeld score ??

  • My bilirubin is 45 and have jaundice and have been put forward for assessment to go on the transplant list..Fingers crossed.cazer.

  • Oh my ... I pray they find a donor soon for you !!! So you know anyone who'd be willing to donate ?

  • I have to make it on to the list first then if I get on there I will be eligible for a donor liver but only at a certain level on the list... There are not enough donors and they tend not to use part of a liver from a live donor in England.. What about your country ?

  • Here they do part liver from a live donor if possible (my son who's 10 has told me he'll give me 1/2 of his ❤️). Otherwise I go on the list when my time comes. Please keep me updated !!

  • Will do thanks cazer.x

  • Ukeld....Serum sodium bilirubin INR creatinine in a calculation to work out wether you are eligible or not to go on transplant list.

  • I use Eurax by Geigy. Very good.

  • thanks i'll look it up

  • I have tried everything and now I'm looking at starting a clinical trial as the itch is destroying me day by day

    I find being cold is better and I strap ice packs to my legs and feet at night to give me some relief

  • and the ice helps? I'll try that thanks!

  • I use e45 after every bath swim etc all over. & When it's bad I use zeroderm topically. My itch comes & goes I'm not on tablet medication. It does help even though it's " inside"

  • ok - I've never heard of either of those but I'll definitely look for them - thanks! :)

  • Hi I'm in the UK so you may struggle but I've a friend in Manitoba I'll ask if there's a Canadian equivalent. X

  • oh great thanks~!

  • Hi all. I have PBC but no itch, although when I do read posts about it on this site I become quite anxious that it's a horrible symptom I may get as my condition progresses. If it is caused by bile acid, does anyone here follow a specific diet or eat certain foods which are known to absorb bile acid? Would that help? Lots of people seem to get the itch worse at night, when the stomach is empty? Does eating small regular meals help, even a biscuit before bed maybe?

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