ALP

[Jules-S]

Hi, I’ve just had my latest blood results back and my ALP has come back as 164, this is up 20 on the last result. I was diagnosed with PBC in 2016 and have been on Urso since. Does anyone know if 164 is really high. My Dr has said no action needed? Thank you, Jules

[4pjx__]

Yes, it is above normal as many of us experience, but I have heard many people state that under 200, while not ideal, is acceptable for those of us with this condition. I don't think I would keep myself awake at night worrying about that number. Mine have been all over the map. From 130 (I think that was my best one) to 350! Then down to 180, three months later!When I spiked up to the 300's is when they started talking about starting Ocaliva but my ALP came down m on its own.

Your doctor isn't concerned, so I would say "rock on" your doing great!

--Pam

[Jules-S in reply to 4pjx__]

Thank you so much for that ❤️🙏🏻

[Camp_Host]

I wish mine was 164. Mine has always ran 250-350, highest was 378. But as 4pjx_ notes, it does fluctuate a lot. Mine currently is 336. I have had PBC since 2003.

[Jules-S in reply to Camp_Host]

Thank you so much for your reply ❤️🙏🏻

[Cody23]

Hiya I was diagnosed with PBC in May 2019 and at that point my ALP was at 990 and fibroscan reading was 38.1!! Which is really high . Iv been on Urso now for nearly 2 years and my fibroscan reading is now 13.1 and ALP is 270 . Tends to fluctuate between 230 and 270 and my gastro isn’t overtly concerned . All other bloods normal so please try not to worry . Good luck x

[Jules-S in reply to Cody23]

Thank you for your reply ❤️🙏🏻

[ninjagirlwebb in reply to Cody23]

How does your doctor explain the fibroscan improving so much? I thought it measures liver elasticity and if it measures better, would mean the liver is healing itself or the urso is making it better.

[Sydgal in reply to Cody23]

Hi 😀Did they tell you what stage pbc you were back in 2019? Thanks 🙏

[Cody23 in reply to Sydgal]

Hi yes I was stage 3 when it was picked up and fibroscan reading was 38.1 . Thankfully it’s now down to 13.1. My bloods are near enough back to normal apart from elevated alp but nowhere near where it was in 2019. I’m hoping the Urso continues to do the job x

[Sydgal in reply to Cody23]

Your doing great , , you will be fine 😀

[Cody23 in reply to Cody23]

Hi , I’m hoping the Urso is improving my liver as the fibroscan readings are so much lower since commencing it x

[sezzey in reply to Cody23]

Wow Cody23. I was diagnosed in June 21 with ALP of 810. I've found it hard to find anyone with high scores my fibroscan was 19 then down to 14 you have done amazing! My consultant said fibroscan shows chirrosus so i am panicking. Next appointment Feb. How long did ypur scan take to come down. Are you on a specific diet?

[PBCRobert Partner]

I would like to invite each of you to contact us directly if you want to discuss your ALP. We can do video calls using data as opposed to phone calls if that is more helpful.

ALP does tend to jump about a fair bit. In an ideal world, the lower the ALP the better. The guidelines point to a cut-off point of approx 200 where, if a patient has ALP above that, secondary action should be taken, if not at least discussed.

There are a number of guidelines on our website if you want to read them.

pbcfoundation.org.uk/newly-...

Yours,

Robert.

[Jules-S in reply to PBCRobert]

Thanks so much Robert, good to know there’s help out there ❤️🙏🏻

[tiscse]

When I was diagnosed in 2012, mine was over 800. After several years on urso it only came down to around 400. So they put me on Ocaliva. It still (after 3 years) is between 260 and 300.

[Jules-S in reply to tiscse]

Thank you for replying. All of these replies have set my mind at rest ❤️🙏🏻

[ninjagirlwebb]

The specialists like to look at trends and not just one specific measurement. If your alk phos results trend higher over time, your doctor would further investigate and if needed, have a secondary treatment for you in addition to urso.

[Jules-S in reply to ninjagirlwebb]

Thank you ❤️🙏🏻

[Dinasmom]

It is higher than normal but not “really” high. You might consider adding intermittent fasting to your personal health care regimen. There are numerous studies which demonstrate the benefits of fasting for reducing inflammation. When my ALP levels did not adequately respond to URSO alone, I added fasting and they fell to normal in about a month. I generally fast after eating dinner at 6pm and don’t eat until 12 pm the next day. If you do it gradually, like I did, it’s not hard. Good luck!

[Jules-S in reply to Dinasmom]

Thank you, that’s interesting 🙏🏻❤️

[iagra]

My ALP was as low as 116 last year, which was in the normal range. Now it is up to 192. I was also diagnosed in 2016. My ALP was 375 at the time. Urso quickly took it down to 250, 200, 160, and so on, down to 116. But, in the last year it started going up again. I'll do the test in the next few months. Fluctuating is OK, I don't like that my trend is up, no fluctuation. Wish you the best. Hope yours comes down.