New to PBC and Urso

[JustChillin68]

Hi, I've recently been diagnosed with PBC, seems not a definitive diagnosis but consultant wanted me to start urso as he thinks it probably is this as ALP and GGT high although biopsy not very specific result and AMA negative.I started urso last week, a bit reluctantly as diagnosis seems a bit unclear and also worried about side effects.

What I'm wondering is, it says urso to be taken with food, does this have to be a meal or would glass of milk do ? I'm on split dose and never eat breakfast so finding it hard to take morning dose early in the day .

[DonnaBoll Administrator]

Hi! I facilitate this group for The PBC Foundation. It's ok to have all these concerns. This diagnosis is not easy to accept even if they are certain of it. I think it is smart of your doctor to put you on the Urso now. It won't do any harm even you end up not having PBC. Urso keeps your bile ducts from becoming inflamed and causing damage to how they allow bile to pass onto your liver. I'm glad you are starting on a split dose. This often times helps someone adjust to the full dose as many people experience GI issues. Reading many conversations about when folks take their Urso, it's what works for you. Some take it at night... some morning and evening... some take their dose all at once. Everyone needs to find what works for them. As far as side effects, it varies as well. Some people never have trouble taking it at all. Don't anticipate problems. It can take time for your body to adjust to it though. Some of the key to diagnosis is just to keep repeating the liver enzymes lab work every 3-6 months and see what the overall trend is. I would highly recommend you learn as much as you can about PBC - making it a bit less scary. I would strongly encourage you to join The PBC Foundation as the amount of information they provide is unparalleled to none - and it's free. PBC foundation.org.uk Getting a definitive diagnosis can often take time as you don't just fall into the 'certain' range of lab results. For most a + AMA and elevated liver enzymes is sufficient for a diagnosis. A biopsy is used only if another liver disease is suspected such as Auto Immune Hepatitis (AIH) or fatty liver disease. One of the keys, though, is to keep repeating the lab work at regular intervals and see what results you have. I'm so glad you reached out here. Please don't hesitate to ask anything. I do personally know how overwhelming this can be. It's ok... take a breath.

[butterflyEi]

From my experience URSO is best taken with food to reduce the effect of it repeating which is most unpleasant. The dose is started across the day while your body adjusts to the medication, after about 3 months you will be able to take it all in one dose. If it suits you better you may like to try your first dose of the day with your first meal of the day (say midday meal) and the second dose can be taken before bed with say milk and a small biscuit. It is best IMO to take it in a pattern that suits your timetable so that medication is not forgotten. I echo the thoughts of DonnaBoll

[Cressy]

I'm on a split dose of Urso as well and seldom take them with food. So far (20 odd years) no side effects.

[Cascade35]

Hi, I agree with Donna, best to start on Urso even if the diagnosis was vague as you can come off it of in 3 or 6 months when they have a more definitive diagnosis. From the moment of my diagnosis I take Urso in one go, every morning with a Benecol drink. No food, no splitting the dose, just a small enriched drink. Like you, I don’t eat breakfast. Everyone takes it differently it seems, it’s what works for you and your routine, it’s just to ensure you take it. Good luck

[janetfolley]

Hi I'm also a Urso taker and take all 4 tablets with my evening meal..to begin with 20yrs ago I split my dosage two with breakfast and two with dinner..it took about 3 months for my body to get use to the medication..I've never had any side effects with Urso ..good luck hope all goes well for you .

[JustChillin68]

Thanks for your advice everyone, it's nice to know that if I have questions about this new diagnosis I can hear about other peoples experience with this. It's hard getting a new diagnosis then only seeing consultant every few months and nobody to discuss it with in between. Family and friends are great but seem to think it's fine and nothing to worry about because I look and feel well but inside I do have a lot of questions and concerns.

[ninjagirlwebb]

Did your doctor order the anti-sp100 or anti-Gp210 tests which can diagnose pbc.

Can you be AMA negative and still have PBC?

This case report highlights the fact that 5% of PBC cases are AMA-negative. In cases with a high index of suspicion and negative AMA, empiric treatment with UDCA followed by testing of other antibodies specific for PBC, such as anti-Sp100 and anti-Gp210.

[JustChillin68 in reply to ninjagirlwebb]

I'm not sure if I was tested for these, he just said I was serum negative but thinks I am PBC due to the GGT and ALP being high, I have no symptoms so it's quite confusing but I've started the urso and no issues so far

[ninjagirlwebb in reply to JustChillin68]

The specific antibodies I mentioned are how liver doctors would diagnose pbc when ama is negative without doing a biopsy.

[JustChillin68 in reply to ninjagirlwebb]

I've had a biopsy which showed some bile duct damage, report said could be due to PBC, PSC, autoimmune hepatitis or from course of amoxicillin I was on earlier in year, so no definite diagnosis but consultant thinks it's PBC so wants to trial urso for a year and see if bloods improve, I'll ask about other antibodies at next appointment

[ninjagirlwebb in reply to JustChillin68]

Sounds good. My biopsy was also not definitive because the pathologist was not an pbc expert. So what my specialist did was have the biopsy slides sent to a liver pathologist in one of the teaching hospitals for transplant hepatology to get a 2nd opinion. That was how I was diagnosed.

[JustChillin68 in reply to ninjagirlwebb]

That's interesting, are you in the UK ? I'm in Scotland

[ninjagirlwebb in reply to JustChillin68]

USA