PCB Symptoms

[Jackflash14]

I have recently been diagnosed with PCB and my main symptom was itching all o or my body. I have been put on Ursodeoxycholic Acid and have been taking them for a month now. My itching has thankfully reduced but I now have a constant nauseous feeling, loss of appetite and a really dry mouth. Are these symptoms of PBC or the medication? Does anyone else suffer from this?

[PeterP54]

I was taking Urso for several years pre transplant for PSC. Cannot say it proved beneficial to me (at the time it was "thought" it might delay need for a TX but the doctors had no firm evidence). I don't recall any minor or bothersome side effects either though.

I hope your consultant can advise you and find a solution to the problems.

[Hidden]

Good morning Jackflash14,

Can I just clarify if your diagnosis is Primary Biliary Cholangitis (PBC) ?

If so , i have attached the British Liver Trust information regarding PBC.

britishlivertrust.org.uk/in...

I am sure our forum members will be along to share their experiences shortly.

May I suggest that you discuss these symptoms with your medical team as they may be able to offer solutions/treatments to improve things. e.g Taking the medication at different times can improve gastro disturbances - this MUST be discussed with your doctors first though.

You can also call our nurse led helpline on 0800 652 7330 Mon- Fri if you would like to discuss further.

Best wishes,

Trust9

[Jackflash14 in reply to Hidden]

Thank you Trust 9. Yes I have been diagnosed with PBC. The link is very useful.

[Hidden in reply to Jackflash14]

You are welcome.

You may also find

pbcfoundation.org.uk/

useful - particularly when newly diagnosed from a peer support perspective,

Trust9

[Hidden]

Hi Jackflash

I can’t say if it is common symptom of pbc or the mixture of medication but I suffer constant with nausea . Xx

[Hidden]

Hi,

I think everything you describe is on the side effects list so it is quite possibly the medicine. I’ve had all 3 side effects at some point or other. You may find it useful to split your dose up in equal parts of 2 or 3 and take it throughout the day, I had to do this after my dose being increased, my throat was so dry I couldn’t swallow properly so split the dose and eventually went back to having it all in 1 dose per day.

[wendyh]

I have heard of some people having nausea when their brand of URSO has been changed. Something to do with the different fillings used by different brands.

I myself have not had any problems when the brand changes but it’s worth asking if your GP can prescribe a different/certain brand that the Pharmacy need to stick to.

[Dyffrynaur]

Hi there. I too am recently diagnosed with PBC and taking Urso. I found at first I suffered nausea but this is better after three months so hopefully yours will pass as well. I think dry mouth is a symptom of PBC from what I have read. Hope you feel better soon

[Kakey]

I had nausea on and off before diagnosis, and I still have it now that I'm on Urso. But I have it more often now. So all that to say I don't know 😀🙄

I also have loss of appetite, but that is starting to get better. I've been taking Urso for 3 months.

It seems quite common to have side effects at first.

Best wishes x

[Jackflash14 in reply to Kakey]

I have been on Urso for 18 months now and the nausea has subsided. I do still suffer with a dry mouth, so drink loads but am constantly on the toilet 🙈 and I suffer with extreme tiredness. I know these are symptoms so I am still trying to adjust and manage as best I can.