been on urso for 6months but alp still up

[Lena2011]

hi has anybody else had this I have been on urso for 6 months now had my blood results yesterday and my alp is still 516 it has come down from 1157 I’m not sure if I should be trying something else now or still carry on with just urso can any1 give advice on this please I’m so worried thank you

[gwillistexas]

Has your dr mentioned adding Ocaliva to your treatment? I wasn’t able to take URSO, so Ocaliva is all I have taken since 2017. It has worked very well for me.

[Lena2011 in reply to gwillistexas]

Yes he did say about this but wasn’t 💯 too give me it just yet as he said I needed too be 1.6 over the upper limit and I’m only 1.4 so has now said he’s goin too refur me too kings collage hospital and see what they think! I’m glad ur treatment is doing what it’s ment too!

[gwillistexas in reply to Lena2011]

Thank you. I hope all goes well for you.

[Abby_green]

Not everyone responds to urso. I'm on it for almost 5 years and never yet had results that are normal..Where I live I also can't yet have ocaliva, but I'm on a high dose of urso+bezafibrate. Have blood tests every couple of weeks to see when I can get the ocaliva.

[Lena2011 in reply to Abby_green]

Ohhh really so maybe I won’t be offerd the ocaliva rite now then if u have been waiting all that time already, I hope ur levels start getting too normal soon!

[Meeru2007]

I believe that you have to take urso for 12 months to determine if you are a responder or not. Alkaline phosphate needs to be 200 or below if urso has worked, a fantastic book for pbc is on amazon wrote by Professor David Jones and has been a god send x

[Lena2011]

Thank you so I have 6 more months of takeing it maybe be4 they will tell if I need anything else!!! I just thought it may have come down more then it has by now!! Thanks again

[IAmTheGlue]

I’m sorry you are going through this. My labs have never normalized and I’m on both Urso and Ocaliva.

My absolute best advice for you is try to find some peace with all of this. Stress is harmful on your body.

I’m in early cirrhosis and I try to lead a healthy lifestyle. I may not be able to fix my liver but I absolutely can build wellness in my body. What I’m doing is taking my medications, following a heart healthy diet, exercise, staying hydrated and most importantly trying to keep a positive mindset.

Just don’t give up. Just keep going. ❤️

[Lena2011 in reply to IAmTheGlue]

I’m sorry too hear urs, it’s good u have a strong mind set I really need too stay posstive it’s hard I suffer so bad with anixty about it all I’m hopeing in time it will get better!

[dragonfly323]

My labs have never normalized with 2 years of urso and 1 year of Ocaliva. I’m still in high 300. Never dropped more a a few points. Did a liver biopsy November 2021 and results were good. MRI is next in September. I just keep going and taking care of myself. The one thing I need to work on is more water. I only get about 3/4 of a liter in me a day not counting other liquids and food.

[Lena2011 in reply to dragonfly323]

Im glad ur results of biopsy was good I had a biopsy and mri back in December when I was admitted too hospital for high levels!!! I feel the same it’s so hard too drink 2 litres a day of water!!!

[Rozzie52]

Hi I have been on Ursodeoxycholic since January 2019 my liver enzymes were 1300I am a partial responder and 18 months later I was put on Octilva after 3 years my liver enzymes are within a normal range. It will take time , I hope you get better soon.

[Lena2011 in reply to Rozzie52]

Thank u so much that really has made me feel a bit better seeing my levels r so high and still r I’ve been thinking all sorts!

[Rozzie52]

I see you going kings that’s good , Dr Banabas and his team Will sort you out . Going down to 500 in 6 months is good it does take time , Octilva is good it still took 18 months for my levels to somewhat normal, my last blood test my levels were 80 .

[Lena2011 in reply to Rozzie52]

Thank u sounds like ur levels was very high like mine, really good ur on the mend now, I hope I don’t have too wait long for kings too see me!

[Twojer]

It’s good you are being referred to specialists. At diagnosis I started at ALP 433 in 2017. They did not normalize in the first year of taking Ursodiol. My hepatologist said they were going in the right direction and did not suggest adding anything. They slowly came down to normal last year.