Is it possible for APL to fall 118 points i... - PBC Foundation

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Is it possible for APL to fall 118 points in just one month?

Gioielli profile image
13 Replies

I am 65 and have had PBC for 13 years. My levels dropped from over 800 in 2013 to 200, where they have remained for the past 4 years, even though being on Ocaliva for one of these years. I was then given Betafibrate to try 6 months ago. Saw my wonderful Prof last month and APL was 209. Recently had a blood test as part of General health check and told that my liver is within limits and my APL is 91! Need to check with my Prof but if this is correct then it is quite astonishing.

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Gioielli profile image
Gioielli
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13 Replies
VeeWat profile image
VeeWat

This is great news. I’m in USA.

How are they prescribing this? Dosage?Which company makes it?

Any side effects?

Gioielli profile image
Gioielli in reply to VeeWat

I have a 400mg tablet every evening. It is supplied by Sandoz Ltd basses in Surrey in UK which is part of Novalis company. My prescription is free because I am over 60 and in the UK. No side effects at all.

Candy12 profile image
Candy12

Wow that is a good test result. I was reading recently that seeing results with bezafibrate can be quite rapid. It’s obviously working for you.

I started taking it almost two months ago, so not had another test yet ( not until 3 months) but I’am hopeful. I was hoping to see a drop in my numbers then but maybe 3=months was a bit optimistic.

Thanks for sharing your experience , enjoy the rest of your weekend.

in reply to Candy12

You too had these amazing results! Thank you for posting. It is encouraging to hear news like this. However positive we are, there's always that dread of things that may never be but this helps keep it at bay. Thank you Candy x

Gioielli profile image
Gioielli

No side effects at all. Always been fine. I don't eat meat or drink alcohol and try to keep fairly fit.

Gioelli - thank you for posting! I don't know the answer to your question, but I believe BillHunter takes bezafibrate so he may jump in and tell you how quickly and how much he responded in a similar amount of time to your one month! Good news anyway, and best wishes

zinchunter profile image
zinchunter in reply to

I'm talking 11 years ago when bezafibrate was not approved but there was some research suggesting possible success. As an URSO nonresponder I asked for bezafibrate. 400mg per day. Worked immediately on Alk. Phos. but not on other liver function tests. Now 10 years on I'm fit but liver is deteriorating with fibro scan 25 so looking for some magic!

What's APL? Please. Billhunter

in reply to zinchunter

zinchunter - i assumed Gioelli meant ALP... Do you know anything about zinc picolinate? I want to know more about supplementing with it for building bone. Of course I will ask gastro if it will be ok to go ahead before I actually do so. I hope something magic shows up for you very soon.

zinchunter profile image
zinchunter in reply to

Sorry. As a zinc man perhaps I should -- but sadly not.

in reply to zinchunter

zinchunter - so, you're not a hunter of zinc then. I'm not a fourth plinth either, but the horse in the picture is on one! Thanks for your reply and best wishes to you.

billhunter profile image
billhunter in reply to

Bèst wishes to you too.

Gioielli profile image
Gioielli in reply to zinchunter

Alkaline Phosophate Level

Skypony profile image
Skypony

So encouraging! Thank you for sharing this, and please let us know if your ALP remains in normal range. Best wishes

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