I was diagnosed with PBC in July after 3 years of raised liver enzymes and tiredness and itching, this was all put down to stress and the menopause as well as being treated for scabies 3 time lol also shift work as I’m a paramedic,
I changed GP’s and was referred to Gastro at Hospital had lots of tests and confined PBC and started on URSO,
I’m now under the Royal Free which is a liver specialist in London,
I feel so flat some days and alone with PBC,
My family just don’t understand it, they seem to think take the Tablets and you will be fine, but to be honest I’m worried,
I’ve given up smoking, stopped drinking which I never did much only socially maybe once a month, and now I’ve changed my diet,
I feel so low is this normal ?????
I’m 51 and I’m worried due to go back to Royal Free next week,
Also has anyone had a significant rise in igm?
Mine was 6.6 at diaganosis and now is 8.8
Normal range is (0.4-2.3)
Alkaline phosphate 289 (0-129)
GTS 119 (5-36)
Bilirubin is all normal
Sorry to start in such a negative post but I’m so worried
Roz x
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Rozm2004
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I was 46 at diagnosis back in late 2010. I started itching severely early in 2010 that led to the diagnosis. My blood checks turned up with higher than normal LFTs at the time and in early November that year I went to see a consultant local hospital (I am in Lancashire) and before the end of 2010 I was taking the urso.
I had my first GGT (you relate to it as igm I think?) at the hospital and it was hgher than normal. This apparently gives some indication of liver inflammation. Mine was rising during 2010 but a few months prior to seeing the hospital doctor it actually took a drop as did some of the LFTs and that was without any urso.
After starting the urso I had a good drop in the abnromal bloods as well as the GGT but then around 18mths later started to have a slight rise at blood check and then another dip and I've sort of see-sawed ever since. The bloods are not really expected to go back to normal even with the urso though some do regain normal blood work after diagnosis. Perhaps it depends on how long they had the PBC prior to it being diagnosed I don't know.
I had a bit of a heads up but I never mentioned to the doctors that I stumbled on PBC in a library book a few months after going to see my GP with itching. HOped I never had it and that it was a temporary glitch as I'd never been one for being ill or seeing doctors.
I've never been a smoker and only ever really had a few drinks on special occasions. I have found over the last 7yrs and I have done a bit of experimenting myself over time to see if I could perhaps ease the itching but I personally think a drastic dietary change is not a good idea.
I was just told to continue eating as I had been doing. I thought I had a good diet anyway. Never been one for fast foods nor fry-ups, etc and I still continue like this. On the whole not doing so bad.
Had a few initial side-effects from the urso for a few months early days but nothing significant with them.
My family are really the same, think just by taking a pill daily I'll be normal again but it might not work like that. Though PBC does seem to make one appear normal, it can become something very different with some of us. We are all different with PBC.
As for the itching, I've found that as the years have now passed (diagnosed 7yrs next wk., itching for 8 after the New Yr) it has altered and these days I tend to find that it's notso bad though I do get it later at night but by 6a.m. it has gone. I sort of morph into something entirely different of an evening, get fidgety, prickly and sleeping during the night often disturbed as I never feel quite right when I go to bed and can be up and down several times in the night.
PBC has altered certain aspects of my life and there are things I'll probably not do again but they are nothing significant (for instance I know I'd not be able to go to cinema and sit through a movie now, wouldn't feel comfortable to see one through).
My motto is just to get on with living life as best I can, enjoy it when I can and not waste time if possible.
I have so many things to ask about symptoms and PBC feel like a hypochondriac ha ha
So forgot to mention they prescribed questrian for the itching which I couldn’t tolerate and then gave me Rifampicin which I’ve not taken as the side effects scared me and have been given a low dose of hrt patch, and the itching has subsided a little, but like you it’s worse in the evening, was having dreadful night sweats which made itching worse fingers crossed the hrt has helped with this.
Are you able to work with the tiredness?
I’ve gone part time and have had some time off sick but just not sure how I am going to carry on with my job as it is quite stressful
Sorry for all these questions,
I’ve found reading through posts on here so helpful
I never went down the route of medications for itching. I wsa rather bad with it during 2010 and had to endure the long (11wks) wait from receiving my first hospital appointment to go but I reckon what kept me going was the fact that I kept thinking was a glitch (I'd been working longer than allotted full-time week as a full-time (small shop) covering manager and itching started a month into going from part-time to temporary full-time). I was pretty fatigued at the time but never thought much of it.
I had only remarried the year before starting to itch and thought my life was going to be great after being a young widowed mother but things happen. I never took life for granted, got along despite. I supported my children, had to pay for everything and still have to. My husband took the decision on our first real holiday together in 2010 to voice his opinion and he said he'd rather I quit my job as he had a good job and I had a private income from my former late husband that I receive for life. I know I did wish and still do I'd not made a career change in 2009 but with some things you never know unless you go for it and if you don't you always wonder. I returned, handed my notice in and then returned to the voluntary sector that I used to fit in-between paid employment.
For me all that fatigue seemed to vanish at some point during 2011. I never thought much of it. It is the itching that is the bane for me. I know over time it has changed how my skin feels. I find it feels more hyper-sensitive these days if I reach early evening and I can no longer wear certain clothing that I used to do. But I'd rather have the itch as it is now than in 2010. Knowing I now have PBC and it probably will never disappear if it eve went back to 2010 I am not sure how I'd fair now.
I was diagnosed last year and was put on Urso straight away which helps stabilise your blood test results (hopefully). For the itch I take chlorphenamine 4mg (piriton) at night which has really helped me and am also on HRT patches. Can't say the itch has gone completely but it is better. As for the fatigue it comes and goes and I find walking helps, take a stroll and get some fresh air and don't let it beat you.
Emotionally I try to keep positive and have been to a couple of meetings with other PBCers and that helps too. Give the PBC leaflet to as many people as possible so they can be informed and maybe understand.
I also try to be realistic in what I can achieve and set myself goals and don't get upset about what I don't get done!
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