Newbie - Urso

[Tetris73]

Hi, I found out I probably had PBC about 6 months ago and after plenty of blood tests, Fibroscan & Biopsy it was officially confirmed to me last week. I have absolutely no symptoms and only found this out due to a random blood test taken while I was pregnant which did not go to term. I have just been prescribed 250mg per day of Urso to see how it goes. The pharmacist said the Urso will probably cause me diarrhoea for the first week and then possibly the itching a lot of people speak about. Does the Urso cause the itching or does the disease cause the itching? I'm dreading going from no symptoms to having this itch that so many people suffer from.

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Hello Tetris73.

Have to say I've been on uso now since December 2010. The pharamacist doesn't know what he/she is talking about!!!

Yes urso can cause diarrhoea in some patients but in others it can cause constipation. I had a fw initial side-effects on starting urso December 2010. I was diagnosed due to starting to itch intensely early 2010. Itching is part of PBC for a lot of patients. My itch went a bit worse in the beginning on starting the urso I thought but then it altered and as time went by I tend to itch later at night these days other than almost 24hrs a day like I did in the early days.

I think in my case having the itch has improved due to taking urso as it helps with better digestion due to bile compromisation that PBC causes but also I do think that urso can cause some of us to itch so for me one might cancel the other out resulting in still itching but not like originally. I think if I didn't take the urso my itching would be extremely bad now as it started off just dreadful.

I had a bit of heartburn on taking urso in the early days. I also felt a bit of tummy bloating and also for first time in my life started to get constipated. I haven't really had diarrhoea with the urso but I think perhaps it could be due to dosage. I altered my diet slightly to accommodate my issue and been OK. the other side-effects did vanish within a few months of starting urso.

Some never develop the itch of PBC whereas others unfortunately do.

I have noticed on reading patient info leaflets with drugs family members have been prescribed as well as the one for urso and even standard over-the-counter paracetamol, ibuprofen, etc all state the same that the medication 'may cause itching' (or pruritis). It seems a standard mention as a common side-effect.

I think if you have the itch of PBC you definitely know you have the itch. It's not a standard itch a lot of people think and even some of my family members dont' really understand. The itch of PBC comes from inside and not an allergy.

[Chrisprio]

Hi Tetris73,

I'm really sorry to hear that your pregnancy didn't go to term and that you now have PBC diagnosis confirmed. I also want to welcome you to this very supportive site.

As for your question about itching, I agree with Peridot that it's the PBC that causes the itching. However, I certainly got the itch as a temporary side effect (for a couple of months I think) when I first took Urso. I had read this could happen on the medication information leaflet so wasn't too concerned, despite it being extremely unpleasant and disruptive. The good news for you may be that I seem to be the exception rather than the rule. I've not heard anyone else on here mentioning having itching as a side effect of Urso. So, if you are asymptomatic now fingers crossed you will continue that way. My stock answer to most questions about PBC is to ask the PBC Foundation. If you haven't already joined I'd recommend that you do. They are extremely knowledgeable and really helpful in many ways. I hope you have a really smooth PBC journey, best wishes, Cx

[LindyRich in reply to Chrisprio]

I got the itch with Urso.

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Your other replies are right in that PBC causes the itching, just to say you can have PBC and take urso and not have the itch.

I was diagnosed 8 years ago and thankfully I still don't itch, the urso did cause me some diarrhoea and bloating to start with. I spaced the medication out over the day and always take it with a meal.

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Urso did nothing but good for me so far. I have lumpy knees. You learned of yur decease the same way that I did. You have no choice but to take it if you want to slow this disease down