I was diagnosed with pbc a few weeks ago. LFTs are normal, AMA positive and was diagnosed on the basis of liver biopsy.
I have no symptoms at all currently.
My consultant has suggested started URSO and I am thinking about it. But I'm really worried about it bringing on itching which I don't currently have.
As my liver function tests are normal anyway it will be hard to measure effect anyway. But I don't want to do the wrong thing.
Hello Kitsilano.
Well with PBC that is diagnosed a lot of patients tend to present to a doctor with the itch and/or other symptons that are causing them to worry. Other patients with PBC are often stumbled upon if they have the LFT blood test and it comes back abnormal.
I can't say for certain as I'm not medically trained but normally someone who is classed as asymptomatic that is without any symptons of PBC and has normal LFTs but has been diagnosed with PBC (in your case due to liver biopsy) just tend to be monitored and in event the LFTs become abnormal urso(deoxycholic acid) is normally started.
This is what I have read but it can vary between professionals and I cannot say there as it is your doctor's opinion as you'll understand.
Now in my experience with being on urso now for 3yrs., I think I am pretty much right in saying that it doesn't actually bring on the itch but it can be a temporary side-effect. I think it would be unlikely myself. I say this as though once we itch with PBC it doesn't tend to vanish altogether, but for a lot of patients with PBC urso can improve on it somewhat. I thought I was itching more on starting urso early Dec 2010 but over the months I started to see a change in the itch. For quite some time now I've just had the itch at night. Some nights it is a right aggravation but other nights I can go to bed, fall asleep and even if I wake once in the night, return to sleep and not even know that I've actually had the itch from late night. My itch starts in 'full bloom' around 11p.m. and then it is 5a.m. when it has vanished.
I'm not sure if my LFTs ever return to a normal state over more time (they have dropped over the last 3yrs) I'd lose the itch as it's said that we itch due to used bile returning via the bloodstream and the salts in it leak out and as I understand that, they tend to irritate tiny nerve endings beneath the skin. I accept it tho' I'd rather not have the itch but in a way it is ridding the body of its own toxins, a sort of protection if you can say that!
I think you'll be pretty much ok myself tho' there are no guarantees. You might have another respondent on here soon who can verify more due to their experience of taking urso and having no symptons or normal LFTs.
Meanwhile I'd take care of what you eat, I try to cut out all food additves that are known not to be so good (MSG is one, saccharin another), cut down or abstain from alcohol if you have it (I don't bother drinking anymore, doesn't bother me as I was never much of a drinker prior to 2010) and try to keep as healthy and active as possible.
Good Luck and welcome to the site.
Thanks so much for the detailed and thoughtful reply. I dont think I will rush into the URSO but keep and eye on things.
I don't itch and thankfully never have. I am the urso tablets as I did get a hive type reaction to the capsules I was given, but it took about 4/6 months to start....... Cleared up with strong antihistimes. Some people do reaction to urso, but lots don't and it really seems to help slow the progression of PBC down considerably especially for those that are symptom free.
Hope you have a great Christmas
Lou
Thanks Lou, it's reassuring to hear you dont itch. I'm not sure what I dread most - the itch or the tiredness! Merry Christmas to you too!
Hi Kitsilano,
I'm not able to offer any personal experience to help - other than observing that I'm not aware of other cases of people developing the itch from URSO. However, have you joined the PBC Foundation? As well as reading through their valuable 'PBC File' you could talk to one of their advisors to see if they can offer advice. Also, did you question the consultant on why Urso is being suggested? If you get a bit more info on the subject, why not ask for another chat, or maybe write or phone.
However, I am curious about your diagnosis: for personal reasons. What was it that led to you being tested in the first place? In my case a +ve AMA test 'turned up' when a former GP was checking out the causes of headaches and joint aches - this was 22 years ago. Personally, I think I was just stressed and upset at the time, as it was not long after my mother's death. I still only have annual lfts (always perfect), and I've never been offered a biopsy or other more invasive tests, beyond detailed ultrasounds, and a whole range of blood tests. I've never had any symptoms of PBC, and I don't think of myself as having it - the initial GP never mentioned it - but 6 years ago a consultant diagnosed (labelled?) me as 'pre-symptomatic for PBC' ... I'm just wondering what made them carry out a biopsy for you, when no one's ever suggested further investigations for me. Did you have a high titre level of AMAs, perhaps? Assuming you are in the UK, it does annoy me that so many of us seem to get very different explanations, treatments, medication and even diagnoses! Not to mention the variation in how seriously we are taken when we have questions and quibbles.
Sorry for mild rant: I hope all goes well for you and that you are able to sort out this dilemma soon. Have a good Christmas, and try not to let it worry you: as I said, I haven't succumbed yet after 22 years.
Hi GrittyReads,
Your experience is very interesting to me. I was found to be AMA+ve in April during blood tests to investigate a sudden episode of joint pain, that went within days. My GP did lfts and when they were normal didn't seem concerned or inclined to do any further investigation. But I had googled and had gathered that if I did have pbc then the only treatment option seemed more likely to be effective early rather than later. So I asked for a referral to a consultant to investigate further.
The consultant did more comprehensive blood tests (my AMA titre was 1:640, all else completely normal) a Fibroscan (normal) and a liver MRI (normal). For some reason (it later transpired) he was under the misapprehension that I had elevated lfts and for this mistaken reason, ordered a biopsy. (He later acknowledged he would not have done so with normal lfts - which I had).
Anyway - the biopsy showed VERY early stage pbc - Stage 0/1 apparently, but enough to diagnose me.
My lfts are still normal and if it hadn't been for the consultant's error I would be in the same situation that you were 22 years ago.
I can only hope that I remain asymptomatic and with normal lfts as you have done and that my pbc is very slow to progress. But there is no way of knowing that based on 1 snapshot in time of my liver. So I am torn as to whether to start URSO and take it for the rest of my life. At the end of the day it is probably the sensible thing to do, but given your situation I am sure you can understand my hesitation.
I am in the UK by the way - and have private healthcare which perhaps made a difference in terms of my request to be referred to a consultant. But my biopsy seems to have been a mistake!
Were you referred to a consultant based on your AMA positive?
Thanks for your input.
Kits, I recommend definitely take the urso I take mine right before bed with no side affects.. You've nothing to lose by trying X
Hi Kitsilano,
Thanks for the extra info. I must admit that your account - plus a few others that people have related on here - is making me wonder if I should reconsider my stance on whether I have PBC or not. (Apologies for long account, below ...)
For about 12 years, and then another* 6 up until now, I have just had annual lfts (with ultrasound scan and other bloods six years ago) but no other medication or treatment for PBC whatsoever [*NB I had a gap of about 5-6 years after I was told to stop having lfts, as if nothing had developed after 12 years, it never would]. For the first phase I didn't even know that the risk was serious: it was pre-online searching, my GP was very calming, I was young-ish and fit with a widowed father, wonderful husband, mountains to climb and a PhD to finish. My GP had sent me to consultants straight away (rheumatologist and liver specialist), but after they said 'all clear', there was nothing other than lfts, which were always good.
My +ve ama record resurfaced 6 years ago, in a new GP practice, when I'd had on-going pain in my wrist [this was eventually diagnosed as mild arthritis ... probably exacerbated by the physio's advice to wear a wrist support, so I'd lost muscle support: it's been fine since I got back to the gym and climbing!] I think the GP probably panicked, and I saw a consultant pretty quick. That was a strange experience, as every test was clear, and in the discussion with the consultant he seemed to be saying that he thought it was all fine, yet when the letter arrived the diagnosis was 'pre-symptomatic for PBC'. Unfortunately, I didn't even notice the diagnosis, as it was set off to the side and rather lost among all the contact phone numbers and Consultant's details. It wasn't until I received an invitation from the hospital to take part in genetic testing, as 'Our records show you have PBC ...' that I looked more closely. Yet the other GPs in my practice (I won't see the first one as she never explained what PBC was, so I went home and Googled ... just before Xmas!) were not worried, and when they reassured me, I was still happy to go along with the idea that I didn't really have PBC. It was only when I began to have problems with Travel Insurance that I got a bit more concerned, joined the PBC Foundation, and made much more of an effort to educate myself about PBC. Even then, I was still fairly happy to be an ostrich, with my GP telling me that I have always had 'perfect' lfts, which I assumed was the 'gold Standard'. Now I'm not so sure. As I said, your case and a few others have made me wonder if I should be pushing for more conclusive investigations.
I have discussed having a reassessment, with my GPs, and I'm waiting to have my annual lfts in January before deciding quite what I push for. I had a brief (unofficial) email exchange with a PBC specialist, who confirmed (as my GP has repeatedly observed) that my diagnosis does not actually exist as an accepted account (something Travel Insurance companies will now point out). It was he who also confirmed that one needs to have 2 out of 3 positive tests for a diagnosis of PBC to be given: +ve amas, and/or abnormal lfts, and/or biopsy +ve for PBC. So now I'm torn.
My favourite GP takes the attitude that if everyone were tested for everything, then a lot of people would be consumed by the fear that they had a terrible condition, as well as labelled with something that may never develop. Her favourite example is the Rheumatoid factor, while I gather that far, far more of the population are +ve for amas than will ever develop PBC. In my case, should I insist on a biopsy, in case my results prove to be like yours?
Thanks for telling me more, it's certainly given me food for thought.
Gritty
NB I notice Jpmac says you've got nothing to lose by trying the urso. Is that true? What are the adverse effects of urso - actual harmful ones, that is?
Hi GrittyReads,
I can understand your uncertainty. However if you have had the AMA for 22 years without further development then if I were you I'd be inclined to put myself in the small, but existing group of people who have AMA but not pbc. To be honest I almost wish I'd never had the biopsy and could class myself as the same as you for now since my lfts are normal and I have no symptoms. It doesn't seem clear cut whether I should start URSO at this point so all I really have is a sense of dread and waiting for this disease to "get me"! Hopefully that may calm down over time though.
With regards to travel insurance - I have yet to deal with this issue - is it not possible to exclude pbc since you'd be unlikely to be affected by it?
Have a very merry Christmas!
Hi kitsilano, I've recently found out I am positive for ama and am now waiting for my lft results. As a big worrier I've been doing a lot of reading about pbc and on the face of it it does appear that not many people with ama do not end up with pbc. However there have been studies carried out that suggest that being ama positive is 10 to 30 times more common than pbc. Of course some of those people could go on to develop pbc, and a number of them were found to have elevated liver enzymes. I'll find the link to one of the studies.
You'll need to google this I'm on my phone so can't get links properly:
Prevalence of antimitochondrial antibody in Japanese corporate workers in Kanagawa prefecture.
Actually, ama plus pbc is just 0.74% in that one.
I have been looking for some evidence of positive predictive value and intermediate values on AMA. I think there are a lot more people with mildly positive AMA's who got an overzealous work up and have polluted the PBC population with a new demographic full of false positives. PBC is likely a spectrum too. If you have no other lab abnormalities no itching and no major symptoms (we can all be tired and bloaty at times) then you may be on the end of the PBC spectrum that dies of something else while being paranoid of PBC for 15 years
From experience, I do think urso can cause the itch if you have it when diagnosed with PBC (how I ended up taking myself to the doctor, started with the itch early 2010). I found when I took 300mg of Urdox Dec 2010 I felt more itchy for a couple months. Then it started to lessen over time but I've still got it later at night until around 5a.m.
The 300mg tablets were recalled summer last year and I had to have a change of urso to 150mgs. Different manufacturer. I suffered initial side-effects of heartburn like I did on starting Urdox. I went to a different pharmacy November 2013 and have got a different manufacturer and I have felt the itch considerably more since starting this batch. Hopefully it will start to lessen once again. One thing I haven't got this time with the new batch is heartburn!
I was reading the patient info leaflet with the Destolit and itching can be one of the side-effects as it also stated on the Urdox I used to get. The only thing I can think of is it a case of the different fillers in the tablets. (I've never had capsules as someone has mentioned. They are in fact more expensive to the NHS than the white chalky tablets.)
Hi Kitsilano
I have PBC - I had a biopsy in May 2011 and began taking Urso in about September 2011. The reason I first went to my GP was because of my itching. I understand that itching is a fairly unusual side effect to taking Urso, but, unfortunately I itched even more when I began taking Urso, so had to take several weeks of taking a very reduced dose and then building it up to the required dose. However I understand that Urso can slow down progression of PBC which is why I take it. Other people have suggested you contact the PBC Foundation - they are marvellous. Also, I think it was Peridot(?) who suggested getting the free DVD from LIVerNorth - which I cannot recommend highly enough - which tells you all about PBC.
Pat_H
Hello Pat_H.
There is also Liver North's newsletters on their site too which I do find interesting to read when it is added at a quarterly interval.
There are also at the time what are up-to-date insurers who can insure (though states no guarantees as things change) at the end of the newsletters.
There used to be a newsletter on a hospital site, think Queen Elizabeths Birmingham but I don't seem to be able to find it at the moment, been awhile since I looked on there.
Thanks, Peridot. I think the thing that surprised me most on the Liver North DVD was the example first consultation. I don't know about you, but I've never had such a long and comprehensive consultation - first time or any time. I've got all my information from the PBC foundation and people like you. I'm thinking of moving to Newcastle!!!
Hiya again Pat_H.
I never got more than a 10min appt with the hospital consultant following the diagnosis of PBC! My first consultation was where he did a quick check of hands, lets and eyes, etc and then asked me a few questions. He then said I'd have the AMA blood test (and the ANA) and I'd get another appt to see him again. My GP informed me I had PBC as the consultant asked him to do so and then I got the 10mins when I returned to see him after being on the urso for about 6wks.
My GP never seems that interested either, NONE of them who I've seen since diagnosis spend much time with me. OK them interpreting the blood results but that is all they seem to do. I seem to spend more time hanging about in surgery waiting to see the GP than I do seeing one!!!
I will move to Newcastle too! It is OK there and have to say love their accents!
I itched for a couple of weeks when first starting urso, then it went away and now I take them without any problems. My LFTs are almost normal a couple of months later, my AMAs have always been negative and my dr doesn't want to perform a biopsy, my new dr thinks I dont have PBC, that it is benign cholestasis of pregnancy...although my baby is 1 year old. Still on urso and under observation...
I started Urso this week. I started itching this week - no itch up until now.... 
When to take urso?
New Diagnosis of PBC and Prescribed URSO
Started the Urso today
Just diagnosed (caught literally RIGHT when disease started)/ possibly linked to acetaminophen?
Any partial responders to URSO out there?
