Itching & Urso?

[Karaxxx]

Can anyone please offer me some advice I am going crazy with itching. I’ve had it for 3 weeks now, every day & night. I’ve not been on urso long & wonder if that’s causing me to itch. I’ve never itched like this before & I can’t cope. Or do I now have “the itch”? I woke up this morning with really sore legs, I must have been scratching in my sleep! My gp has told me to stop taking the urso, I’m not seeing the hepatologist til mid May. This is all new to me & I’ve had enough already. I’ve tried antihistamines & just don’t know what to do 😔

[butterflyEi]

The GP can prescribe you colestyramine which is a rather revolting powder one sachet either side of breakfast may control the "itch" however for stronger medication you need to see the specialist. If you do take the Questran powder it is better taken in a thicker liquid such as juice or kefit rather than water. There is a good article in the Bear Facts magazine spring 2015 on the itch written by Prof. Neuburger.

If you stop the URSO and the itch goes away it will be an indicator for you. However URSO is the first line therapy for keeping PBC under control. PBC for most of us is a slow auto immune disease but of course the sooner a person is on therapy the better the outcome.

Are there any stressful events that would have triggered the itch rather than the URSO or perhaps it may be worth trying the URSO from a different manufacturer in case you are reacting to the fillers, this is something the doctor can prescribe for you.

For me I was diagnosed in 2006 and remained itch free until 2014 when a very stressful event in my life occured and it is then that the itch went out of control. Since then I have been prescribed Cetirizine 2 tablets twice a day - this worked for a short while and was useful while I waited for the NHS hepatology appointment, by the time I saw him I was itching like mad so the first thing was colestyramine then rifampicin was added and then 25mg of sertraline and I now have some peace, the "itch" is always in the background but I can live my life. As a topical application to give some relief I use a 2% menthol dermacream from the fridge.

Hope the above will be of some help.

[Gotpbc in reply to butterflyEi]

My Dr is fine with taking an antihistamine, it helped a lot for itching, since nothing else did

[Karaxxx in reply to Gotpbc]

Hi I’ve tried antihistamines & it’s not helped unfortunately. I’m hoping this is temporary & will pass but right now it’s driving me mad, I’m waking in the middle of the night itching. It’s mainly my legs.

[Karaxxx in reply to butterflyEi]

Thank you for this, my gp wasn’t interested I giving me anything he just told me to stop taking the urso. I haven’t got anything stressful going on right now so I don’t think it’s that. I am on my 2nd lot & both have been different brands, itching on both. I’ve rang the specialist today & hopefully will get some advice tomorrow x

[Karaxxx]

So my advice is to stop taking it. I guess I will have to see what happens next 🤷‍♀️