Hi all,
I'm newly diagnosed with PBC just a little over 2 months ago. I've had elevated liver enzymes (alk phos) for several months. I started Urso November 7, and just had first labs to check. The alk. phos. level went up by over 25 points!! Has anyone else had this happen?
Thanks,
Lilygrower
No, I’ve not had this happen, mine went down after one month from 129 to 90 and then lower still. I’m now at 73 at 2 years on it.
It took some time for my ALP to go down, but, even now after being on URSO for a little over 2 years, it's still higher than normal. It went up and down several times. You shouldn't be discouraged. It might take up to 6 months for ALP to go down. My gastro says that with PBC, ALP may never go down to normal levels, even on URSO. It also tends to fluctuate. Some times your labs will be better, sometimes worse. You also should do an ultrasound test, once or twice a year, to monitor fibrosis in the liver.
Best of luck to you!
Two months is a little early to worry about being a responder to URSO, it will take a while to settle and many things can affect your ALP.. and it’s not a question of numbers zero to one there are many things to factor in. I remember mine fluctuating all the time between 200/250 so if you looked at my graph for ALP over the years it looks like a wavy line but what is important is that the overall picture is one of a downward trend over time. Mine never went back to normal and was never expected to. It still sits at 170, nearly 10 years on.
What is important for you at the moment, is are you taking the correct dosage for your weight and make sure your consistent in taking the tablets it’s not easy in the beginning especially if your feeling well. I so remember I was so busy with work I kept forgetting mine.
You may already have it but here’s a link you might find helpful. pbcfoundation.org.uk/upload...
Sometimes our bodies, like mine, don’t respond as well as others to the Urso and a booster medication, like Ocaliva, is prescribed to help the fight.
Thanks so much for all your replies. So encouraging. I'm taking correct dose of urso 15mg/kg. Doing well at taking the 500 mg 2 x every day. My AMA was elevated. I had elastographic ultrasound which showed stage 2. ALK phos is only liver test elevated now and it's fluctuating from 140, 152 and now up to 180 after starting urso. We'll see how that goes.
I'm grateful for this group!
Hi lilygrower,
Your situation sounds similar to mine. I started Urso in September with slightly elevated liver enzymes and AP of 190. Fibroscan showed stage 2/3. My follow up appointment with my specialist wasn't until December. I was so tired of waiting to know if Urso was working so I went to my GP in November and all labs were about the same which was a bit discouraging. 4 weeks later at my hepatologist appt everything was within normal limits except AP but it was down to 135. I'm scheduled for an MRE next week and he hopes to get a better idea of my stage but I completely understand your frustrations. He did explain that I'll likely have ups and downs and that "trending downward" is what's important over time. Best of luck and keep us updated💕
Hi I was diagnosed in January, started on urso 6 weeks ago & mines gone from 198 to 132 in those 6 weeks. Not sure what the normal range is but this is a good start isn’t it? My issue now is awful itching. It started about 2 weeks ago so I was wondering if it’s the urso. My levels lower & now I have itching, is that the price I have to pay 🤔😔
Worried and stressed out 
Confused
