Ocaliva, dosage, elevated cholesterol

[Ottley3]

Hi, diagnosed with pbc 3/17, started on urso 4/17, improvement flattened 9/17, started ocaliva 5mg 11/17. Saw immediate improvement but now my liver function tests climbing especially ALP at 335. considering moving up to 10 mg ocaliva but my cholesterol is already elevated from the ocaliva and I’m concerned. Anyone else worried about ocaliva and cholesterol? Or seen the liver enzymes elevate on ocaliva? Thanks.

PS I do itch already from ocaliva.

[Pamela4475]

No experience with ocaliva but prayers sent your way

[Ottley3 in reply to Pamela4475]

Thanks 🤗

[LindaVillanova]

Hi there,

I have been on 10mg OCA since Feb of this year (5mg began Aug 2017).

I do not have the itch. I did notice my ALP start to rise a bit for a few months prior to Feb and then when I started 10Mg the next set of bloodwork was lowest ever.

I too got stuck on the low 300's (before OCA) but last blood work a couple of months ago ALP was 173.

Next round of bloodwork in 2 weeks so we will see what happens. I don't have a history of elevated cholesterol- its has gone up a bit but Doc's are watching for now...Linda

[Ottley3 in reply to LindaVillanova]

Thanks. Great to hear such a positive story. Wondering - how much did your ALP rise when you decided to switch to the 10? I did not have a history of high cholesterol before starting ocaliva. Stay well!

[DonnaBoll Administrator in reply to LindaVillanova]

Great ALP at 173 from 300's!

[gwillistexas]

I take ocaliva 5 mg & have been on it since last September. My ALP was 240 when diagnosed last June. Was immediately started on Urso but taken off because of allergic reaction. Took about 3 weeks to get Ocaliva but my ALP dropped quickly. Jan 2018 it was down to 132 & the same April. I took statins for high cholesterol 5 yrs prior to being diagnosed. Was taken off that for a while but cholesterol started going back up so I was put back on statin in January. I can’t blame a Ocaliva as my cholesterol is genetic. But in the drug info it does say it can cause hdl to drop & it did. Lab in Esrly July showed 7 point increase in ALP. I do not know if it’s because of statin but I have no choice but to stay on statin. I expect to be put on 10 mg Ocaliva at any time. As Robert says, that is the optimum dose.

[Ottley3 in reply to gwillistexas]

Got it. Thanks! My HDL is going down and my ldl is going up.

[Kat44]

Hi Ottley,

I've recently been diagnosed as well and I've seen a huge improvement by changing my diet. No red meat, no sodium, no alcohol. I've also replaced my avocado oil for olive oil, started eating liver friendly foods like salmon, dandelion greens as well as drinking chamomile and holy basil tea instead of coffee. As per my doctor, taking a low dose aspirin daily and lots of water.

Hope your numbers come down soon.

[Ottley3 in reply to Kat44]

Thanks. Minus the aspirin and the coffee I eat like this too. Did you see the positive impact on your enzymes or the cholesterol? Lax to hear this os going well for you.

[Kat44 in reply to Ottley3]

Hi Ottley, my cholesterol was not high so that I didn't have to worry about. My enzymes came down and are within normal but right at the edge so hopefully the urso will help. My ALP did come down to normal. I feel like I'm living in anticipation of my next bloodwork. I really need to change this attitude and accept what is or will be.

[DonnaBoll Administrator in reply to Kat44]

You are not alone. Most of us tend to worry about the next lab results. Just remember that worrying won't change the results. Hoping for good lab results next time for you!

[mamma261]

I have been taking 10 mg Ocaliva for 2yrs, I received a drug information booklet from company that distributes Ocaliva, drug information states that Ocaliva lowers your good cholesterol so making your bad cholesterol high.I take hydroxazine for the itch and it helps a lot. my ALP stay high even though I take Urso and Ocaliva .