Alk Phosphatase Level’s - URSO for 3 Months

[windfire777]

Been on Urso for 3 months and ALT and AST levels reduced by 50%, but alkaline phosphatase was about the same. Doctor says to not worry since the one year mark is the true indicator on whether or not the drug is working. Another doctor said she does not consider the alkaline phosphatase levels as an indicator that it’s working. Not sure what else you would use other then an occasional biopsy. I’ve read a few posts were folks saw a large decrease up front and then it slowed down. Anyone have the potentially opposite response? Trying not to worry about the levels at this point. Thanks!

[Krichards1971]

Same here. I was diagnosed with PBC in August. I have been on Urso Forte 1000mg a day. I had my 3 month follow up a 2 weeks ago. My liver enzymes came down some, but my Alkaline Phosphate is around the same. I had an EGD last Wednesday and it showed esophageal varices. So now im nervous! Don't know what to expect.

[Hidden]

Alk Phos is one of the indicators that my Hepatologist monitors. In general you want it to be under 200. That is what he told me.

[Hidden]

Well I wouldn't accept a biopsy 'occasionally' if I've diagnosed PBC. I was diagnosed without a biopsy and wouldn't agree to one now.

There are other non-invasive tests that can indicate how PBC is. Scans can show how we are doing, even the standard ultrasound (once saw on tv 2 guys with liver issues due to lifestyle, one was shown to have fatty liver, other cirrhosis). There's also a fibroscan that is relatively new and as far as I know it's not exactly local for me if I was requested to have one. Expect I'll be offered at some point in future. I was diagnosed late 2010, been on urso 7yrs come 3rd Dec.

I got off to a flying start on the urso but then after 18mths started to slow down each blood check and then went up a bit and then down a bit - my AST and ALP see-saw each time that is one up, the other goes down - but I'm still said to be OK with PBC.

The bilirubin is a good indicator with PBC as is think I'm right the albumin level that is another important marker too.

I never thoiught much of the urso in the beginning. I just go with how I feel day-to-day. I find when I feel I'm not doing so well (I just itch still, not like it was in the early days) my bloods tend to reflect opposite and vice-versa.

[Hidden]

This is part of an article I copied many years ago on the PBCers: I didn't think I had room for the whole article. I suppose it is still true today:

ALT, AST, ALP and GGT can be markedly elevated in individuals with liver disease but normally functioning liver. In PBC, ursodiol (Actigall or URSO) may lower the blood alkaline phosphatase activity in the setting of significant liver damage (Stage III or Stage IV histology).

The best biochemical tests of liver “function” are serum albumin concentration, serum bilirubin concentration and prothrombin time. In PBC, the serum bilirubin concentration (which may also be lowered by ursodiol) is the best biochemical predictor of disease progression.

By Dr. Nathan Bass, Professor of Medicine, Medical Director, Liver Transplantaion Program, University of California, San Francisco, January 2002

[GrittyReads in reply to Hidden]

I think that the thinking on PBC has changed so much, over the years, as so much more has been discovered and studied. So I really would not place much store in results from so long ago - I think 2002 is an age in PBC research.

As Robert - of the 'PBC Foundation' - says below, thinking is now quite precise ... as well as all the testing that is done. The 'PBC F' recently published an 8-page summary of the formal diagnostic criteria, which have just been debated and revised by the leading Medics, consultants and researchers in the 'PBC Community.' Do have a read of Robert's post and check out the 'PBC Foundation' website - link at top of page.

[Hidden in reply to GrittyReads]

I know things change. Like my doctors would say I didn't need URSO because always I had such good LFT test results. I would get mad and change liver doctors, but that didn't help. I've always thought the Bilirubin and ALP were the ones to watch. Then in April we learned my spleen had started gobbling up my platelets. They were only at 89. By Oct. 21, I had brought the platelets up to 130 from 113 in July, but I'm worried nothing can stop the spleen from taking them. I don't know if not having a gallbladder enters into it or not. I've had PBC close to 30 years and even at a slow pace, I suppose it's progressing. I have very little itching, but suffer from dry eyes and mouth from Sjogen's, which does respond to treatment if I stick with it. Other than that I'm doing very well for my age. Thanks for all the info. Best Wishes, Wanda in KY, 80, PBC/AIH

[PBCRobert Partner]

In 2017, ALP levels are key to any measure of risk in PBC. Or more accurately, changes in ALP numbers.

Those who respond to Urso are now expected to have normal life expectancy. Latest figures show that even without biochemical response to Urso, those taking the tablets also have improved life expectancy. We also now have a number of secondline therapies (one licensed, others not) that would appear to be making a difference.

Once upon a time, there was no meds: just a reduced life expectation. Then Urso helped. Then we found some don't respond to Urso and those people were found to have higher risk of needing a transplant further down the line. Now these people still have better management within a system of more knowledge, understanding and tools to use.

In terms of histological progress (cell change in the liver), liver biopsy is no longer considered as the best option and current guidelines recommend technology such as ultrasound, fibroscan, and MRI/E.

In terms of levels: in both ALP and bilirubin, lower is better. Risk isn't a 1 or a 0, it is a sliding scale (over many many years) which has a number of contributing factors (e.g. smoking, etc). Ideally we are looking for ALP to be nomal or as close to normal as possible and bilirubuin to be well within normal.

That said, if they are not within those ranges, it isn't all doom and gloom. It just leads to closer monitoring and a more hands-on approach to care.

[windfire777 in reply to PBCRobert]

Thanks Robert!

[Hidden in reply to PBCRobert]

In Oct. my ALP was down from 99 to 97, AST 27, ALT 17, & Total Bili 0.3. Even with these improved numbers, shouldn't I still be concerned with my platelets? Right before he retired, my Gastro wouldn't stage me, even after the CAT scan. He would only say I am advanced.

[gwillistexas in reply to Hidden]

According to my drs lab, those are in normal range. What was your platelet count?

[Hidden]

Just up tp 130 Oct 21st. Ref Range is 130-400.

[gwillistexas in reply to Hidden]

I just looked at labs. May 2016 my platelets were little above the high normal. June 15, 2017 little high. 2 weeks later , June 29, back to normal. Who knows.

[Hidden]

I believe that what we consume either on or in our bodies directly affects the liver. Our liver is already being abused by a misguided immune system. Sometimes I would just love to have a Coca Cola but a few months ago I learned that sodas contain High Fructose Corn Syrup. I gave them up along with several other things. Maybe that is why all my blood tests have improved or it may have been my juicing. I'm trying everything to retrieve my lost platelets and keep them up, but I don't know what might keep my spleen from taking my platelets.

[Hidden in reply to Hidden]

The Cocoa Colas made in Mexico are made with cane sugar. They sell them in the US too; so if you need to satisfy a craving, you can, if you are in US.