ALP just shot up: Hi there, I’ve been on this... - PBC Foundation

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ALP just shot up

LindaVillanova profile image
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Hi there, I’ve been on this site for a number since of years but never posted- just read and learned from everyone.

Brief history-diagnosed in 2015 at 55 yrs started Urso. Added OCA a few years ago and am on highest dose, 10 mg. A few months ago I had annual blood work and alp was 219. Not terrible but a bit higher than normal for me. Also had a fibroscan that was 13.7, up from 11 last year.

Dr decided to start me on bezofibrate as a 3 rd line (starting tomorrow).

My concern started this evening when my labs came back. ALP spiked to 299 from 219 a few months ago. My belly has been rather bloated/larger than normal- I thought maybe middle age spread finally caught up or all that covid downtime. Started working out more and eliminating my cookie addiction ... no change but figured maybe it takes time at 61.

The 299 ALP is really freaking me out. U/S scheduled for next week and dr appt July.

Has anyone else had a similar experience?

Thanks for reading.

Linda

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LindaVillanova
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Liz_K profile image
Liz_K

Hello Linda, I only recently joined this sight and just noticed your post. I am ten years older than you and was surprisingly diagnosed with PBC about 2 1/2 years ago - but have probably had it for years before! I Began 1000mg urso per day which lowered my ALP between 205 - 220 for about a year then started to climb up to 300! Have recently had fibroscan and is now up to 10.1 from 8.3 last year! So as a non responder to Urso Dr. has included 5mg OCA daily as well. (have only been on OCA for two weeks now - hopefully this will improve my ALP!) I too was stressing about my rise in ALP but Dr. assured me that I shouldn't worry about the rise unless it got to over 500, and that a fibroscan is not necessarily an exact representation! By the way I am AMA neg. but ANA Gp210 positive (with no IHA crossover) are you also ANA positive? So far I thankfully have had no symptoms and am trying to keep a healthy diet and active lifestyle. Please don't worry too much and take care.

LindaVillanova profile image
LindaVillanova in reply toLiz_K

Thanks Liz! Yes I am ANA pos. Fingers crossed OCA works for you. Appreciate your reply.

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