New to PBC

It all started with the blood tests, showing elevated liver enzymes, that was 3 years ago, I had ultrasound, endoscopy and a liver biopsy, none of which was conclusive. This year my consultant said he thought it was PBC, and trialed me on Urso. After 3 months the liver function test had improved. He has said now that he wants me to stay on it. Reading some blogs I find some symtoms really scarey, but up to now I'd had nothing out of the ordinary. However I do suffer from urinary infections, and recently had one. I found I then got diarrhoea, possibly due to the antibiotics. I have though suffered a bit with loose poohs in the morning. Yesterday my hands started to itch, and then I had what I think was reflux, but not sure. After my evening meal I started to get a feeling like my food was stuck, and this continued throughout the night. It's still troubling me today, but not as much, so I got some galviscon from the chemist. I'm just thinking is this the start of something else or symptoms of PBC.I'm not due to see the consultant for 5/6 weeks, though I could see my G.P, who has been very sympathetic, but doesn't realy seem to know much about the condition.

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  • I suffer from acid reflux and it is when the acid comes back up and it burns ... very uncomfortable and worse when lying down. Not everyone has all the symptons that are associated with PBC. I have probably had PBC for about 20 years but was only diagnosed in Sept 2009. Thinking back, the only sympton I had was acid reflux and tiredness. Nowadays, I dont get so tired because I have changed my diet. Eating too many carbs makes me tired so I have cut them down and the tiredness as improved. I dont suffer with the itch (touch wood) unless I eat too much chocolate. Although, I suffer with itching in my ears occasionally and have had the occasional itch on my hands, but that is common anyway because there is a saying ... right hand to receive, left hand to relieve so don't think that is associated with PBC only.

  • I've never actually had a urine infection but can recall may years ago when my mother had cystitis.

    I did notice after starting on urso Dec 2010 that I seem to need the loo to pass water a few times during the night if I wake up due to the itch. Prior to starting with the itch in 2010 (and diagnose by Dec 2010) I never frequented the loo during the night even if I woke a few times. Don't know if it due to urso but suppose it could be as a lot of medications do work through the system and pass into urine.

    I've never suffered from loose stools as such. Prior to starting on urso I never had any bowel problems but since, well I have gone through bouts of constipation and it isn't through lack of fibre in my diet either. I do think that is perhaps down to the urso.

    Initially for a few months also after starting on urso I suffered heartburn and a bit of bloating but that all vanished over time.

    Yesterday I discovered something but am loathe to try it out again in case I am right as I do suspect I am but I didn't feel very hungry at teatime (breakfast through until around 4p.m. seems best time for me to eat and then my appetite tapers off). I only had a small snack and took my usual 2nd pill of urso (take 2 x 300mgs per day, one at breakfast, one with tea) and last night I really did know I had the itch. I am certain that was due to the urso and my way of thinking, perhaps I hadn't somehow balanced what I had eaten during the day with the intake of urso. I had just had 2 rather good nights of relatively little itch prior to a night where I had a bit of itching and awake for several hours to last night where I hardly slept at all.

    This is the bane of PBC, I am now starting to feel tired but have to get ready a bit later on and take over an hour's trek to the dentist for a check-up that was booked 2 months ago. Find these days if plan anything in the notso distance future then it can be hit and miss to whether I am feeling 100% awake later in the day, depends on the night before!

  • Thanks Ax1888 & peridot, you never know how other meds react. When I asked the chemist @ Sainsburys for something to take with urso for the heartburn( I got gaviscon) he said to leave 4 hours between that and the urso, and there was no problem. I wonder whether that is a wise move when mixing any meds.

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