What can this be?

[KathyFish]

For the past 4 years I have had high LFT counts which is controlled by

500mgs of Urso x 2 daily.

I am 64 years old and tests for AMA and a biopsy, both 3 years ago, were negative.

Now have aching pain in the liver area, painful joints, fatigue & itching - what can this be?

[Hidden]

How high was your enzymes

Do you have a GI or a liver Dr

Are you in USA

[KathyFish in reply to Hidden]

I'm in the UK. My counts were around 375/400. I have been under a Professor for the 4years but no definitive diagnoses. Tried to stop the Urso but counts increased within weeks so back on them. Latest development is the arthritis and the ache in the liver area.

[Hidden in reply to KathyFish]

It’s always been my understanding that I will be taking Urso for the rest of my life. I pray that it continues to work for me.

[KathyFish in reply to Hidden]

I am under the same understanding that this is a drug for life if yuo have PBC.

I just find it strange that Urso works for me but I don't have PBC...apparently.

[Hidden in reply to KathyFish]

I would get a second opinion.

[Ballymahon2 in reply to KathyFish]

You can have pbc and have negative ama

Your blood tests can tell a lot

As far as i am aware high alp and ggt alt can be markers for pbc

If urso is getting yourblood levels down then it is working

[Ballymahon2 in reply to KathyFish]

I dont understand why you tried to stop the urso did your blood levels come down since starting urso

I dont have a definitive diagnosis of pbc i have positive ama negative m2

I am on urso based my bloods

I am due blood tests soon

First ones since starting

I will be delighted if my levels come down and very happy to stay on urso

My hep has told me she suggests pbc based on blood work but the confirmatory test was negative

[KathyFish in reply to Ballymahon2]

As I didn't have a diagnosis and after 2-3 years on Urso, where my count came right down to 9, it was decided to stop it and see what happens - it shot straight back up so back onto the Urso. Going this week for my annual check up at the hospital so will see what they say this time.

Many thanks to everyone for your responses.

[KathyFish in reply to KathyFish]

Sorry meant to say that my count came down to 90 - not 9

[Hidden in reply to KathyFish]

hi im in uk to my levels are around 383 when not taking urso 1000mg a day but drop to less than 200 ama neg like u but also other bloods that mark pbc i have had for over 8yr now and told urso for life pbs causes pain in body of bones and also liverache right ribs side i to am under proff at QE brum im 63

[EileenUSA]

As I understand it a small percentage of women with PBC test AMA negative.

There are others on the forum who report the same. Here's one example discussion of same.

healthunlocked.com/pbc-foun...

[Ballymahon2]

Urso should have brought down your numbers if you have pbc

Maybe you are a non responder and your specialist should look at the other meds for pbc

You need to see a specialist asap

[bobbycat]

There is another medicine now instead of Urso...perhaps ask your doctor ..I know Urso has worked well for me .I am on 750mg based on weight and my weight is pretty low so perhaps you need more Urso? Good luck