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PBC Foundation
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Rheumatology tommorow

Year since my last appointment and since then pbc confermed, I saw her then as osteoarthritis in hand and feet

I was just wondering if there was anything I should ask, every one on here seams to know everything even there blood results, so I'm thinking I don't ask enough lol

As for the Urso, I'm OK taking the one, but struggling with the am one, I've never eaten in the morning so I find it a struggle plus every time I have 2, I get stomach cramps, but I will keep trying :)

7 Replies

Hi Pinkcrush

Only just seen this so I am guessing you may already have had your appointment.

I think one question that I would want to raise is to make sure the rheumatologist is aware of your PBC and if you have any medication make sure that it is not contraindicated for the PBC.

As to the URSO it seems that for many starting it causes tummy problems and spreading the dose through the day is recommended on the patient information leaflet (PIL) when first taking the dose. After (I think) three months but check your PIL it is okay to take all at once in the evening. There has been many contributions on this subject over the years and everyone seems to find what suits them best whether it be taken all at once or throughout the day. When I first started the URSO I was prescribed omeprazole to help with the tummy problems. Your dose of URSO should be prescribed relative to your weight, again this information is in the PIL.

Let us know how you got on with your appointment.

best wishes

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Thank you :)

Well now I feel confused 😕 and annoying as nurse presumed my mum was the patient :(,

She has given me a prescription for hydroxy chloroquine but I can't take till I see gastroenterology in March in case it effects the liver and eye drops and to go back in 6 months

What I don't get is she's saying all my joint pains are down to pbc, and that my system is probably attacking the joints as well as my liver, I've tried to read up on pbc but I've not seen that anywhere, so what else can it cause apart from lack of energy but can't sleep and the brain numbing poxy itch???

I had a scan 5 years ago that showed osteoarthritis in thumbs and wrist, but is it or is it due to pbc

Can anyone tell me more or where I can learn more I just need to know what I'm dealing with now :(


Hi again Pinkcrush,

Are you a member of the PBC Foundation, free to join through the link above. In their web site information for health professionals there is a bit about rheumatoid arthritis and I am sure if you look through the website you will find more information. If not you could telephone or email them for specific advice. The video's on the web site may also be helpful to you.


I have slight pain in my joints but at 66 and after a fairly full life of using my hands professionally I do not know if it is age or PBC.

Not sure which country you are in but PBCers.org has a prescence on face book (as does the PBC Foundation) where many discuss their problems and I am sure I have seen others mentioning their pain on that type of forum.

Can you find a hepatologist locally I think they would be better placed to advise you rather than a nurse who will be well qualified but may be not so specialized.

For sleeping it may help you to listen to relaxing recordings available on You Tube. I like the voice of Jason Stephenson and have found that I am more relaxed, I also try to walk 4-5 times a week for a minimum of half an hour.

best wishes


Ah thank you, I will look on those sites :)

The nurse was only showing us to the consultant lol but I don't know if I can see a hepatologist, I'm in the UK and everything goes via what a gp suggests

Age is a number but I'm 42, so it was classed as I'm young to have it in wrists

I don't think music would help, I'm relaxed but getting to sleep takes ages, and I do exercise as sorts lol but 2 teenagers and a 7 year old I don't keep still :)

I think I just want to know what is going on inside me so I can move on and deal with it, but seeing the different consultants just leaves me with more

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Hi Pinkcrush - here is a link to the Mayo Clinic's web site that discusses PBC symptoms - bone, joint and muscle pain is one of them - but, please remember, many other conditions involve that sort of pain, including low Vitamin D levels.


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I heard all that are side effects of pbc and to treat the side effects while also taking urso


I also, wondering what to ask. My dr don't seen to provide any information to me on his own and just says blood work is normal but don't forget evendors so, I do have pbc


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