Question for Ocaliva patients - 5 mg or 10? - PBC Foundation

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Question for Ocaliva patients - 5 mg or 10?

Ottley3
Ottley3

Hi! A question for my fellow Ocaliva people .... is it true that everybody starts at 5 mg and then is moved up to 10 mg? I’ve been on 5 mg for almost a year. AST and ALT are close to normal but ALP is very high and my doctor has suggested going to 10. When last staged ( a year ago) I was at stage 0/1 PBC. Thanks for your thoughts!

19 Replies
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I have been on 5 mg one year. Never increased to 10 I suppose because bloods are normal. I believe Robert posted a while back that 10 mg is optimum dose.

Hi Ottley

I am in Australia where OCA is not available. However I have been part of the Long Term Safety Extension Arm of the OCA trial for 6 years. First year, randomised to placebo and ALP climbed to nearly 700, second year commenced on 5mgs for 3 months which increased to 10mgs after that. I have taken 10mgs ever since and ALP has drifted down to about 280 - average result at 3 monthly blood checks.

Hope that helps a little.

Karaliz

I was on 5 mg for 6 months. My LFTS became normal for the first time in 12 years but was still increased to 10 mg as my consultant said that was the recognised dose from studies.

I am scheduled to see a hepatologist in November, yeah! Have been with a GI since diagnosed. I’m curious what the hep May want to try as far as meds. It appears OCA has not done too well at controlling fibrosis. Do you know if it has helped you in that way?

I believe the dose is based on your weight. Anyway, I'm on 10 mg daily. Alkaline phosphate has dropped, but not within normal levels yet.

I don't think that weight is a factor because I weighed next to nothing when I started the Ocaliva 5mg. It was soon increased to 10mg. I have, however, gained weight after the dosage increase. My weight gain has to do with my thyroid issues. My ALK Phos is as close to normal as ever.

Stay Strong❣️

Shannon

Thanks everyone - so helpful. Here’s my deal: I’ve been on ocaliva 5 for about 10 months. Saw immediate positive result, then some erratic results in the spring possibly related to the interference of another medicine. My AST and ALT are close to normal which is great, but my ALP is way too high at 350, and my cholesterol is elevated from the ocaliva.. Getting a second opinion next month, considering several things including increasing ocaliva or even stopping it. I’m petite and in good health and feeling minimal symptoms since stopping the interfering medicine ( birth control) stage 0/1 as of October 2017 and recent mri mrcp were clear. Not sure how stressed to be about the ALP.

gwillistexas
gwillistexas in reply to Ottley3

Ottley3...my thyroid levels bounce like a ping pong ball since starting OCA. I also lost weight, not sure if it was anytime do with OCA but then thyroid was hyper 3 months straight & lost few more lbs. I eat a lot but don’t gain it back. But, I’ve always had fast metabolism. Not sure about all this😀

Ottley3
Ottley3 in reply to gwillistexas

I was thinking of you in my appointment Gwills. Anecdotally I think there are some patients who get dramatically better on Ocaliva and then it kind of stops. I have never called Intercept but am thinking about asking them.

gwillistexas
gwillistexas in reply to Ottley3

Ottley3...that would be great. Please let me/us know if you do & what they say. Tks!🤗

My Hep says you want the Alp to be managed under 200 for pbcers.

Same here.

My ALP had dropped from a high of 375 to 188 after five months of ocaliva 5 mg. I was so happy. But then in June it had rocketed back to the 300 area, and my AST and ALT also spiked possibly related to a birth control i was on. I discontued that and dairy and my AST and ALT are back down but ALP has not moved much. My GGT though was a scary 1125 at diagnosis and is now down to 250 which is still very high but so much better indicating that something is getting better. . I keep telling myself that the livers regenerative powers are amazing and that it all takes time but the consistently high ALP is bothering me. Long answer to your short and helpful response but thanks!

Ottley3
Ottley3 in reply to Ottley3

Sorry to be rambling but i also wanted to mention that my total bilirubin was 0.7 at diagnosis and dropped to 0.4 when i started ocaliva. And then skyrocketed to 1.2 after 6-7 months on ocaliva. Has improved to 0.8 since i stopped the birth control/dairy.

I can only conclude that somehow your liver was impacted by the birth control. Hopefully, your numbers will go back to norms over time by discontinuing its use.

I have been on 5mg/day for 6 months but ALP levels not going down so am now about to start 10mg/day.

Yes thats how it works I believe - make sure you tolerate 5 then within a year go to 10 if #s are still high. Thats what my history is - I've been on 10 for about 6 mths and had the best bloodwork (ALP is my only issue now) ever. Fingers crossed it keeps going down although my doc said 10m doesnt always make much diff.

That’s great to hear Linda. Did you experience any kind of plateau on the Ocaliva 5 before you moved to the 10?

Hi,

Lots of answers here but on

why not also ask the PBC Foundation their thoughts?

Best of luck.

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