Can itching come and go?

Hi, I started with bad itching a few weeks ago and was sent for a blood test which showed very high ALT (750ish). The GP has referred me and I'll need to have more blood tests and a scan, but she has suggested PBC as a possibility so I have come here to see if I can find out more - hope that's ok! Since then though, the itching has more or less stopped. Can this happen in PBC or does it make it less likely that this is the problem? Maybe my liver is ok after all? Thanks for any help!

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  • Hi There

    The funny thing about PBC is that there is no set level of symptoms. Some people have really bad itching, some have none and some have a little. Mine comes and goes. Luckily mine isn't too bad but I know I cannot scratch too hard because of the purplish marks it makes on my skin (like old peoples skin lol...) Get it checked just to make sure. You are more than welcome to come on here to get some answers. We all find help and hope here as it seems PBC is an unusual auto immune disease.

    keep well and take care

  • Hello Dairymilkmum.

    Well from experience tho' I never knew it but back late 2009 I did have a fortnight of bad itching myself and then thought if it didn't go away I'd visit a doctor. It did just vanish but I never thought anything of it until I started with the same itch around Feb 2010. I was badly fatigued, working long hours and just thought I was run down.

    I expect you'll have blood tests to rule out certain things but I know back in 2010 I had blood tests to differentiate as to whether the problem was bone or liver related. Apparently you can show abnormal LFTs with a bone condition. Mine came back showing it to be liver so I was packed off for a scan. A scan which showed pretty much a normal liver and other organs normal too. This was July 2010. By Aug the GP said he had exhausted his blood work and would make me an appt for Hepatology Dept at hospital. The appt wasn't until early Nov 2010 and when that came I had the AMA blood test which showed me to have PBC.

    My ALT was 176 at diagnose late 2010. This reading was higher 3 months prior and I wasn't taking urso so it can be possible for LFTs to decrease of their own accord but I think with PBC it could be a tad tricky. Mine could have halted whether temporary or permanently as there is just no way of knowing. I know with urso one can halt with PBC and altho' we still have the PBC there's no guarantee it will or won't progress further.

    Unfortunately my itching hasn't ceased altogether since taking urso from Dec 2010 but it is much better than it was at the start of diagnose. I don't know if my bloods will ever drop to a near normal level but maybe if they ever did then the itching just might stop. Apparently itching isn't due to the actual liver but how the used bile is transported back to it via the bloodstream. It is thought that bile salts leech out and that is how we feel itching at random places.

    I do think that once one is aware of some type of problem you have to start to take extra special care of oneself. I didn't have any alcohol after my first abnomal LFT. Never being much of a drinker it hasn't bothered me not drinking. I cut out certain food additives, ie MSG and artifical sweeteners. I've not taken any OTC tablets like paracetamol since 2010 either. If I can do without then I shall do as it will be less stress to the liver.

    The odd thing about PBC has Disy has already stated, there are no set symptons for each of us with PBC. Some itch badly, some itch less severely and some suffer fatigue (I don't) and some don't. Some suffer from both of these symptons. Fatigue and itching seem the more prevalent symptons of PBC tho' it appears. Itching for one as I expect fatigue is the same too, is no indicator of how one is with PBC either. I think it all depends on how our systems cope and as we know certain people are prone to colds, others not, seems the same with PBC.

    Ive just had a thought with regards to the antibodies that tend to be present in a lot of PBC patients. Expect you shall have the AMA blood test to check if there are any present as that is an indication of PBC. I can't help wondering if some people with PBC can cease itching perhaps when the antibodies have lessened. It is known that some with PBC can have a recheck of AMAs and then have a negative reading when on urso. I then thought with the antibodies being the anti-mitochondria antibodies and mitochdria cells being energy cells, perhaps if the AMAs have lessened considerably at a time then maybe that is why some of us on urso lose the fatigue?

  • Thanks you for throwing light through your experience. I really appreciated . Take care

  • Hi everyone,I've just read a few of your posts and a lot of you seem to be very knowledgeable about PBC..Can you tell me where all this information is available. I was tested after a routine health check in February and in August after several blood tests and finally a scan and a visit to the the hospital I was finally diagnosed with PBC. I know what an LFT is but don't know any of the others that you mention. I had bad itching a couple of years ago but did not see my GP as I thought it was an allergy it finally went but I did experience feelings of nausea from time to time and didn't always feel great. I started Urso three weeks ago but the itching stopped altogether several months ago but I still experience nausea which comes and goes. How do I find out what kind of diet to follow, I have always thought that I led a healthy life and ate quite well. I am a lot older than a lot of you being 74, but I have always been active and until this diagnosis I didn't take any medication. Have just read the post from Peridot regarding Paracetamol, I do take the occasional Paracetamol for headaches, so any idea what I could take instead. I have never been a drinker so haven't taken any alcohol since Diagnosis. I have seen a consultant twice who gave me very little information. Just would like to say that it's been so helpful reading all of your posts and also that I sympathise when I read how young some of you are at diagnosis, it must be very worrying for you. At least I have got to my 70's without all the stress that you are having. It was quite a shock, to be told that I had a problem with my liver but I think I am coming to terms with it and am now getting on with my life. Sorry, one more question. Is there any point in checking your results from previous ones when nothing can change the results? Take care everyone.

  • Hi there if you contact the PBC foundation they will give you lots of advice and support. Re your last question re blood results I think we just like to see if there are any improvements or deteriorations in case we need to ask our consultants if there are any treatments we should try to help improve things thats why I keeep an eye on the results anyway. Bfn take care.

  • Hi Littlemo, I've now got a lot of information from the PBC foundation which was very helpful, thanks for the advice.

  • Hello alpha3.

    For some reason I often miss new posts, used to get constant emails informing me but don't seem to be the same since the site changed.

    Well I did stumble across the PBC Foundation back in 2010 just prior to diagnose of PBC myself. I started with the itch earlier 2010 and at the time was very fatigued. My LFTs were abnormal on checking and it went from there - more bloods, scan and then I had the AMA beg Nov 2010, diagnosed and on urso early Dec.

    I have since found the website of Liver North (I'll put on at bottom of my posting, just click on link) who are based in Newcastle. PBC Foundation is based in Scotland. I live in England and currently we pay for prescriptions as I do so I do think that for me Liver North is a site I do find useful. (Scotland and Wales no longer pay for prescriptions plus Northern Ireland.) If you click on link, on left you see Publications. Click and scroll down to the bottom where the newsletters are that you can look online at. There was a new one out a few weeks ago as I noticed as I do at times click on site to see. If you haven't already done so, you can request a copy of the dvd all about PBC that they produce. I got one a couple yrs ago (but didn't see it through have to say, my husband did tho').

    Urso can't apparently stop the itch but for some it does seem to be that way. For me I'd say it has just improved how I am and the itch has subsided somewhat due to my liver obviously feeling significantly better than it was back in 2010. I did have the itch for a couple weeks later in 2009 but I never thought anything of it as it vanished and didn't return until 6 months later. I just thought in 2010 it would vanish but it didn't.

    I started altering things I ate during 2010 prior to being diagnosed with PBC. Yes I do not take paracetamol, never did much prior to 2010 anyway unless necessary. Actually whilst I was growing up aspirin seemed more the norm and I would take those as opposed to paracetamol myself at odd times.

    I think one or two paracetamol wouldn't do you much harm if used with caution.

    I try to have simple foods, moreso these days even though I used to eat pretty much that way anyway prior to 2010. I have my own cut-off for eating and that is following the evening meal. I might just have a couple plain biscuits with a cup of red tea around 9p.m. and that is my lot for the night until breakfast.

    I did read somewhere that eating little and often is a good thing and I agree with it. I do not eat until I am basically 'stuffed' as I know I do feel I do suffer somewhat then. I did read that little and often gives bile something to work on but my theory is different I have to say and I don't agree with that. I was informed many years ago that when we eat something, particularly of a fat content, the gallbladder empties bile so fat can be broken down by bile. So in my reckoning is that eat time we eat we are releasing bile and the used bile has to return along the bloodstream and this is the theory, used bile, that is thought to cause the itch.

    I have gone through odd days in the past but not this year where I got a bit down and didn't eat anything for almost all the day nor did I take the urso as I think to take urso, a form of bile we do need to consume food. I found that for a couple days following this, I didn't itch and I put that down to the fact that I'd no constant flow of used bile. Of course we cannot live without any food that is our energy and rebuild supply but this is where I got my theory from with regards to eating. I tend to have a good breakfast, good lunch but taper off at evening meal. I've not lost any weight since starting urso (lost around half stone in 2010 prior to taking urso) and I've not gained any either. I feel pretty great myself.

    I think by just glancing at blood results, you can get a pretty good idea and if they are as good or just a slight better even if one point, then you can get that boost to keep on going until the next blood check. After all if we are doing well and nothing is changing for us we've no real idea how we are doing. The bloods are a pretty good gauge. I don't obssess over them so I think it is perfectly fine.

    The link to LiverNorth----

    livernorth.org.uk/

  • Thanks for the information Peridot, I haven't yet had time to look at the liver north site as we have been on holiday but will as soon as I can. I don't seem to have had the itch now since starting on Urso and the nausea is not as bad, so don't know whether it is the Urso that is helping or not. I am taking 250 Urso three times a day at present but I do find that I don't always remember to take the lunch time one, especially while I have been on holiday and have been out most of the day. I agree with you, regarding the simple meals, and always have eaten a good breakfast and lunch, I also find that my appetite is not the same as it used to be, I don't feel quite as hungry and again am not sure if this is due to PBC or just my age.. Thanks again for your reply it's good to listen to others who have the same problems.

  • Hi there for me personally the itch has never gone away. I have it 24/7 from mild to quite severe at times. The night time is worse but I do take medication that does help lessen it or take it to tolerable levels. I am going to back track now though as my sister reminded me recently that one day many yrs ago at least before I had my first child back in 1996 I took a really crazy bout ot itching one day all over my body I got an anti-histamine which made me sleepy and the itch did die down and go away. At the time I thought it was just an allergic reaction to something and never looked into it. I didnt experience any itching then til 2001 the yr before I was diagnosed and like Peridot if it were not for the itching being so bad I would never have gone to the dr. The fatigue and joint pain I also had I would have just put down to long hrs at work and the nature of the work I was doing at the time. I am sure your dr will run further tests to find out for sure if it is PBC you have. Bfn all the best.

  • Hi guys im not sure if I have pbc but reading the comments its made me think !!! I do have itching dry mouth dry eyes some joint and bone pain and always feeling tired ( ish ) what do you guys think ? kind regards happy anno

  • This sounds like sjogren's?

  • Hi thank you

  • Hey my Alt was 1000± when diagnosed in may it's now 200 hope this helps put your mind at ease.. That's from urso

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