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?
How high was your enzymes
Do you have a GI or a liver Dr
Are you in USA
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.
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.
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.
I would get a second opinion.
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
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
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.
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
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.
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
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
CAN INFLAMMATION BE FELT?
How can people be so cruel
What is the life of a pbc cirrhosis patient, what can they do or not do etc etc.
What questions should I be asking my consultant?
What happens to me next!!
