Urso

[Casslucy]

Hi just wondering did anyone start off taking Urso slowly and build up the dose over a couple of weeks. I want to try and avoid as many side effects as possible and wondered if this helped your system get used to it. Thanx

[periwinkle88]

I did, and am glad I did it that way. My doctor recommended it to avoid side effects. Even so, I felt like I had the flu for the first few days—headache, body aches, generally felt crummy. But it improved over time, and by the end of my slow titration up I felt better than before I started.

[Casslucy in reply to periwinkle88]

Thanx Periwinkle this is all new to me and is freaking me out a bit. My biopsy report says some mild inflammation around the bile ducts but I don't have the ama antibody and lfts were mildly raised so I'm hoping it stays that way!

[butterflyEi]

it is so long ago now I do not remember how I started taking URSO but the Patient Information Leaflet (PIL) suggest splitting the dose across the day for the first three months after which time it can be taken together in the evening.

For myself I always take it with food.

best wishes

[Casslucy in reply to butterflyEi]

Thanx ButterflyEi I received my letter yesterday from my Consultant which says its mild inflammation no sign of scar tissue. He seems to have put me on 500 mgs per day which I know according to the info I got from the pbc foundation appears to be too low but I wanted to start low anyway and I'll be seeing him in a month so I'll query that one then!

[liver-bird]

Hi Casslucy, I started on 3 x 250 daily and took them 1 x 250 after breakfast and 2 x 250 after dinner. Always after food.

I didn't get any side effects so took 3 x 250 after breakfast.

Then I was increased to 4 x 250 daily and I take 4 after breakfast. This is the correct dose based on my weight.

The diagnosis of a progressive (albeit slowly) and incurable condition caused me a lot stress and that stress created symptoms which settled as I got used to the idea and understood my condition better.

I think it's a good idea to phase in Urso. Big hug. Diane

[Casslucy in reply to liver-bird]

Hi Liver-Bird thanx so much for replying to me. For some reason my Consultant has prescribed me 500 mg daily I know that's less than its supposed to be but I'm happy to start with that and when I see him in a month I'll query this with him. I really don't take a lot of tablets even pain killers if I can avoid it so this is going to be really strange for me but I suppose it beats the alternative! Also going through the menopause so I blame everything on it lol! Do you mind me asking how long you have had pbc? Thanx

[liver-bird]

Hi Casslucy, I was diagnosed age 66 in 2014 but on 2009 my liver function tests were not right so I have had it longer. Like you I don't like taking stuff but I responded well to Urso and my liver function numbers came right down and I believe it keeps me well.

In 2016 I had lots of pain and diarrhoea which my GP said was to do with PBC but that was not right. My daughter bought me a book about gluten and I cut it out. Immediately I was much better. My GP then referred me to gastroenterologist and tests confirmed I had Coeliac Disease, another autoimmune condition. I am now on a strict gluten free diet but feel much better.

It is sometimes hard to know what is creating symptoms and I see Urso is blamed a lot. My experience is Urso is friendly and the foe may be elsewhere 😊

Your consultant is weaning you onto Urso and will probably increase dosage as your body accepts it. I hope it works as well for you as it has for me. Do let us know. Diane

[Casslucy in reply to liver-bird]

Thanx Liver-Bird it seems these ai conditions are like browny badges and you just collect them as you go along lol! I wonder when you are treating one and getting better with it does it get angry and decide OK I'll try another one lol!

[liver-bird]

🤣😂🤣 who knows

[Rozzie52]

I diagnosed in 2019 my liver enzymes were 1300 , I begun on 500mg for 2 weeks and then 1000mg 2 weeks later to minimise the side effects ( sometimes I get dizzy) I take mine at night time.

[Casslucy in reply to Rozzie52]

Thanx Rozzie52. I have started on half my doze I'll up it in a week or so. I don't have any symptoms (well none that I know of, I'm going thru the menopause so who knows lol). My hepatologist says the biopsy was mild and no scarring so hopefully it'll stay that way for a long time

[Rozzie52]

I am 3 years on treatment I am a partial responder to urso and also on Octilva, Things will settle down , I had some inflammation but this has settled down now , I do get some joint pain and I get tired easily but like you I am having menopause symptoms I hope thing will settle down for you soon

you will start to feel better soon .

[Casslucy]

Thanx Rozzie52 I notice a lot of people on this site suffer with bad fatigue I have to admit I don't notice this with myself I've never been a great sleeper and I'm quite a busy person and up until a month ago I was looking after my elderly dad and I go to bed quite late but I generally don't feel tired until bedtime so I'm hoping this doesn't change with me. On saying that my BFF gets about 9 hours sleep every nite, wouldn't be as busy as me and she's still permanently exhausted lol