Newly diagnosed.

[Cody23]

Just recently been diagnosed with PBC although showing no physical symptoms apart from fatigue. LFTS were highly elevated with an ALP of 842. Fibroscan reading showed 39.5 which came as a huge shock especially after infrasound came back normal. Iv now started on Cholurso which I believe is the cheaper version of Urso and have been itching like mad. Does this calm down eventually ?

[Karaxxx]

Hi, was diagnosed in March with PBC & I also was put on Urso. After 4-5 weeks I started with awful intense itching. It was unbearable. I was told to stop & then try again on a lower dose gradually building up to my full dose & the itching returned before I got to that stage. I have now been prescribed Rifampicin which I’ve been on for 3 weeks & I have to say the itching is now under control. However, I think you have to be monitored on that as it can affect your liver function tests & mine have raised again. I’m back next week to see the hepatologist & so I guess I will find out what is next. I can’t cope with the itching at all, it was waking me in the night & was intolerable. I had no itching before starting the urso. I am on the same as you are but I thought Urso was Urso & that there’s just different brands?. The first batch I had wasn’t that brand it just said on the box ursodeoxycholic acid & was capsules. The 2nd was from a different pharmacy is Cholurso & they are round tablets I itch with both!

[butterflyEi]

Hi Cody23 can you telephone the secretary to the specialist who prescribed Cholurso and see if the good suggestion from Karaxxx might be helpful. Alternatively if you could speak to the hospital pharmacy they may be able to advise you whether you should ask for Ursofalk or similar.

For myself I was asymptomatic at diagnosis in 2006 but like you my ALP was high. Was prescribed Ursodeoxycholic acid in the guise of Ursofalk. I stayed symptom free until 2014 when the itch kicked in, since then I have been prescribed colestyramine, rifampicin and sertraline to control the itch which for the main part these medications do.

let us know how you get on

[Lindamarie63]

Hi cody23. I was diagnosed in 2016. No symptoms except fatigue. I have been on ursso ever since and the itching started not long after. It was that bad I would scratch until I bled. Always the same place on my right arm and shoulder. I was prescrbed questrian light sachets which I took twice a day and although it did ease the itching it was still there but bearable. In April I went on holiday to Spain and took my questrian with me but did not take any as my itching seemed to stop!!. I have not taken it since then and have no itch !!! I think the sunshine has helped the itch. We have had cloudy days for two weeks with rain and I can feel the itch starting again. I do believe if I lived somewhere that had more sunshine than England I would not suffer with the dreadful itch. That's my theory anyway. 🤣