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Experiences with
Ocaliva
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Ocaliva is working for me 🙌🏻🙌🏻
I’m very lucky to now be on
Ocaliva
- Obeticholic Acid 5mg daily I started treatment on Monday 9th April and had my bloods done on Monday this week and saw my GP to go over my results. My ALT is 48 (this is actually in the normal range! Whaaaat!?!)
I’m very lucky to now be on
Ocaliva
- Obeticholic Acid 5mg daily I started treatment on Monday 9th April and had my bloods done on Monday this week and saw my GP to go over my results. My ALT is 48 (this is actually in the normal range! Whaaaat!?!)
Alison2306
in
PBC Foundation
6 years ago
PBC and newly started Ocaliva
At age 30 Started
Ocaliva
9/4/18 Hoping this new medication along with the urso helps slow things down for me.
At age 30 Started
Ocaliva
9/4/18 Hoping this new medication along with the urso helps slow things down for me.
Alison2306
in
PBC Foundation
6 years ago
Reporting in.
I’m not on URSO because I had very bad reaction and not eligible for
Ocaliva
, so waiting for other clinical trials that I may be a candidate. Thanks for all your posts. Helpful to know one is not alone and that a lot of symptoms are common to us all You all have an awesome day. J
I’m not on URSO because I had very bad reaction and not eligible for
Ocaliva
, so waiting for other clinical trials that I may be a candidate. Thanks for all your posts. Helpful to know one is not alone and that a lot of symptoms are common to us all You all have an awesome day. J
Jeanb47
in
PBC Foundation
6 years ago
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For people who did not respond to Urso, has Ocaliva had a more positive effect?
Anyway, the consultant has prescribed my partner with
Ocaliva
; we are now waiting for the pharmacist to source it, as its apparently quite a new drug in the UK, or at least one thats not often prescribed.
Anyway, the consultant has prescribed my partner with
Ocaliva
; we are now waiting for the pharmacist to source it, as its apparently quite a new drug in the UK, or at least one thats not often prescribed.
djws
in
PBC Foundation
6 years ago
12 week update on Ocaliva - plateau’ed.
Started
Ocaliva
11/13, at the lowest dose 5 mg/day. I was very nervous about it. Was really itchy weeks 2-4, it subsided and now comes and goes. In terms of blood work, I saw great improvement in first 6 weeks, over the next six it has plateaued - actually gone up a little. Is this normal?
Started
Ocaliva
11/13, at the lowest dose 5 mg/day. I was very nervous about it. Was really itchy weeks 2-4, it subsided and now comes and goes. In terms of blood work, I saw great improvement in first 6 weeks, over the next six it has plateaued - actually gone up a little. Is this normal?
Ottley3
in
PBC Foundation
6 years ago
Thyroid
I understand
Ocaliva
can have abnormal effect on levels, so be it. Do those of you on Urso have the same problem? So sick of it...
I understand
Ocaliva
can have abnormal effect on levels, so be it. Do those of you on Urso have the same problem? So sick of it...
gwillistexas
in
PBC Foundation
6 years ago
Hi. My name is Dena. I have PBC.
I'm taking Ursodiol,
Ocaliva
, and Creon for the PBC. I also take other medications to keep my blood pressure in check. 13 pills/capsules a day - not to mention the supplements. Any of you have similar experiences? I welcome any feedback from any of you.
I'm taking Ursodiol,
Ocaliva
, and Creon for the PBC. I also take other medications to keep my blood pressure in check. 13 pills/capsules a day - not to mention the supplements. Any of you have similar experiences? I welcome any feedback from any of you.
denabentley
in
PBC Foundation
6 years ago
...PBC plus another autoimmune disease?
OCALIVA
is tremendously expensive, and it might not work for me! many questions, but 1st: how many of you have PBC in addition to an autoimmune disease such as SLE Lupus?
OCALIVA
is tremendously expensive, and it might not work for me! many questions, but 1st: how many of you have PBC in addition to an autoimmune disease such as SLE Lupus?
divinemizm
in
PBC Foundation
6 years ago
Can I take Milk thistle while on ocaliva
I have just recently been started on
ocaliva
due to poor response from URSO. I wondered if there were any contraindications against taking milk thistle while on
ocaliva
. I forgot to ask my consultant if it was ok.
I have just recently been started on
ocaliva
due to poor response from URSO. I wondered if there were any contraindications against taking milk thistle while on
ocaliva
. I forgot to ask my consultant if it was ok.
Gilz1702
in
PBC Foundation
6 years ago
Itchy on Ocaliva - it comes and it goes?
I’ve been on
ocaliva
for seven weeks and Urso for seven months. I was slightly itchy on Urso but not a big deal. Week 2 on
ocaliva
i was extremely itchy, then it subsided and now i am crazy itchy again. Anyone else experienced similar?
I’ve been on
ocaliva
for seven weeks and Urso for seven months. I was slightly itchy on Urso but not a big deal. Week 2 on
ocaliva
i was extremely itchy, then it subsided and now i am crazy itchy again. Anyone else experienced similar?
Ottley3
in
PBC Foundation
6 years ago
Just saying hello
My labs have been as close to normal range as they've ever been, thanks to the
Ocaliva
. Still having the monthly bloods ran. Im seeing a new rheumatologist at the end of the month to try to get the diagnosis of fibromyalgia in writing.
My labs have been as close to normal range as they've ever been, thanks to the
Ocaliva
. Still having the monthly bloods ran. Im seeing a new rheumatologist at the end of the month to try to get the diagnosis of fibromyalgia in writing.
Shulsey
in
PBC Foundation
6 years ago
6-week update on ocaliva
Started
Ocaliva
11/13. I was very nervous about it. Was really itchy weeks 2-4, it’s better now. ALP from 274 to 191 ( high of 375) ALT from 89 to 67 (high of 207) AST from 52 to 39 (high of 139) Still a ways to go but I’m feeling very hopeful and grateful.
Started
Ocaliva
11/13. I was very nervous about it. Was really itchy weeks 2-4, it’s better now. ALP from 274 to 191 ( high of 375) ALT from 89 to 67 (high of 207) AST from 52 to 39 (high of 139) Still a ways to go but I’m feeling very hopeful and grateful.
Ottley3
in
PBC Foundation
6 years ago
Ocaliva and weight gain.
I started
ocaliva
3 months ago and already gained 10 pounds. As anyone else had this problem and what did you do to change it. It's mostly in my stomach, I'm pretty worried since this medication has caused death in 19 people so far.
I started
ocaliva
3 months ago and already gained 10 pounds. As anyone else had this problem and what did you do to change it. It's mostly in my stomach, I'm pretty worried since this medication has caused death in 19 people so far.
Debrann62
in
PBC Foundation
6 years ago
Starting Ocaliva
I am starting on
Ocaliva
next week as I am not responding to URSO after 9 months. Anyone have any pointers for me as I start this new drug
I am starting on
Ocaliva
next week as I am not responding to URSO after 9 months. Anyone have any pointers for me as I start this new drug
happy0507
in
PBC Foundation
6 years ago
Take 1 or 2
I thought by starting
ocaliva
I could stop Urso? From what I've read I am supposed to take both. Looking for help here. Also I feel I've gained weight but no other problems.
I thought by starting
ocaliva
I could stop Urso? From what I've read I am supposed to take both. Looking for help here. Also I feel I've gained weight but no other problems.
Debrann62
in
PBC Foundation
6 years ago
Dragging my feet on starting ocaliva
Because my blood test had plateau’ed, my hepatologist recommends that I start on
Ocaliva
. I was prepared to do it - have the pills and all, but am suddenly nervous about side effects of
Ocaliva
(i have none with Urso) and potential damage when I am in very early stages.
Because my blood test had plateau’ed, my hepatologist recommends that I start on
Ocaliva
. I was prepared to do it - have the pills and all, but am suddenly nervous about side effects of
Ocaliva
(i have none with Urso) and potential damage when I am in very early stages.
Ottley3
in
PBC Foundation
6 years ago
Generic URSO & Effectiveness
ALP started going up and up and up and my doc wanted to put me on
Ocaliva
. I put that off as long as possible - and I actually asked him about different brands - if that could be the case (he had never heard of that happening).
ALP started going up and up and up and my doc wanted to put me on
Ocaliva
. I put that off as long as possible - and I actually asked him about different brands - if that could be the case (he had never heard of that happening).
Ktltel
in
PBC Foundation
6 years ago
Ocaliva side effects does it improve?
Interested to understand if anybody has had side effects taking
Ocaliva
.
Interested to understand if anybody has had side effects taking
Ocaliva
.
AB12
in
PBC Foundation
7 years ago
Intercept Patient Update for Ocaliva
At month 12, the reduction from baseline in mean HDL-C level was 19% in the
Ocaliva
10 mg arm, 12% in the
Ocaliva
titration arm and 2% in the placebo arm.
At month 12, the reduction from baseline in mean HDL-C level was 19% in the
Ocaliva
10 mg arm, 12% in the
Ocaliva
titration arm and 2% in the placebo arm.
Jo_Br
in
PBC Foundation
7 years ago
Obeticholic Acid, aka OCA or Ocaliva
https://www.pbcfoundation.org.uk/news/latest-news/statement-from-the-medical-advisory-committee-of-pbc-foundation Please see the link above to the statement from the Medical Advisory Board of the PBC Foundation. It has been on the site for a while but I wasn't sure if you had managed to find it. I
https://www.pbcfoundation.org.uk/news/latest-news/statement-from-the-medical-advisory-committee-of-pbc-foundation Please see the link above to the statement from the Medical Advisory Board of the PBC Foundation. It has been on the site for a while but I wasn't sure if you had managed to find it. I
PBCRobert
Administrator
in
PBC Foundation
7 years ago
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