New drug octavia: Hi has anyone on here with... - PBC Foundation

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New drug octavia

debs1004 profile image
15 Replies

Hi has anyone on here with pbc started this new drug?

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debs1004
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15 Replies
Ktltel profile image
Ktltel

Debs1004,

I know there are several on here that are on Ocaliva. Are you in the U.K.? I'm in the U.S. I myself am not on the new drug but didn't want you to become discouraged that no one has posted yet. They will. Here in the states everyone in the UK is 6 hours ahead of me. If I post to late I usually have to wait til the next day to see responses.👍

Are you starting Ocaliva soon or have you already?

Stella ❤

gwillistexas profile image
gwillistexas

Hello. Yes, I have been on Oclavia little over a month. No problems so far.

Prettyeyes79 profile image
Prettyeyes79

I’m taking ocaliva for about almost two months. I live in the states, I’m haven’t got black work done yet to see if it help me or not.

I will let you know when I see my dr. Soon

gwillistexas profile image
gwillistexas in reply toPrettyeyes79

Hope all goes well with you. I’ve had one lab & will have monthly for few months. Ocalvia brought my ALP down 61 points in one month.

Prettyeyes79 profile image
Prettyeyes79

I mean bloodwork done yet not black work oops

mamma261 profile image
mamma261

I have been taking ocaliva for almost a year, started with 5 mg now taking 10 mg tablet , I also take Ursodiol 1200 mg a day

Wingepr profile image
Wingepr

I've been on it a month today. I see my doctor on Wednesday to have blood tests done to see how its going.

gwillistexas profile image
gwillistexas in reply toWingepr

Let us know

Wingepr profile image
Wingepr in reply togwillistexas

did blood work yesterday!

Lucky4 profile image
Lucky4

I just started it two weeks ago (Canada). Due to GI side effects that were intolerable I had to decrease from 5 mg in the morning to 5 mg every second day and also start taking Zantac. I also get fatigue from it though I hear that over time this generally decreases. I've taken Urso for years and had no problems with it at all. I'll be getting labs done in about a month. The Oclavia was added as though I'd been responding well to Urso, my labs started getting worse over the past few years.

wilkat profile image
wilkat

Been taking Ocaliva 5mg for 10 months and Ursodiol 900mg,no problem. I am from USA

gwillistexas profile image
gwillistexas in reply towilkat

Well, I’ve been spelling it wrong, lol!

Karaliz profile image
Karaliz

I have been on OCA for 4 years ( ongoing trial here in Aus) & never had any issues. I stopped responding to Urso after 7 years & have cirrhosis .

Cheers

Karaliz

gwillistexas profile image
gwillistexas in reply toKaraliz

That’s encouraging. Thank you🌸

debs1004 profile image
debs1004 in reply toKaraliz

hi I too have cirrhosis I am on day 5 the itching is intense getting worse

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