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Ocaliva
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Alkaline phosphatase is 161
Pbc, they put me on
ocaliva
earlier this year along with urso, apparently I'm not responding to either, ..my alkaline phosphatase fluctuates from the 120s to 161 every test, is there anything I can do food wise or herbal to lower this? I hate pills lol
Pbc, they put me on
ocaliva
earlier this year along with urso, apparently I'm not responding to either, ..my alkaline phosphatase fluctuates from the 120s to 161 every test, is there anything I can do food wise or herbal to lower this? I hate pills lol
Dunks72
in
PBC Foundation
1 year ago
ALP and when to add 2nd line therapy
So my specialist wanted to add
ocaliva
. I convinced him to give it another 6 months before adding anything and he agreed. So I am praying my numbers will lower without another med. Then I saw many take fenofibrate instead so I was curious as my doc did not mention it as an option.
So my specialist wanted to add
ocaliva
. I convinced him to give it another 6 months before adding anything and he agreed. So I am praying my numbers will lower without another med. Then I saw many take fenofibrate instead so I was curious as my doc did not mention it as an option.
Heaslea
in
PBC Foundation
1 year ago
Constant uti's
Hello everyone Hope you are all as well as you can be . I think I just need a space to talk where people understand and offer valuable advice. I was diognosed with sle lupus and sjogrens in Dec 22 and was put on hydroxychloroquine plus drops /ointments for eyes artificial saliva ect ect. Since then
Hello everyone Hope you are all as well as you can be . I think I just need a space to talk where people understand and offer valuable advice. I was diognosed with sle lupus and sjogrens in Dec 22 and was put on hydroxychloroquine plus drops /ointments for eyes artificial saliva ect ect. Since then
Lucylou72
in
LUPUS UK
10 months ago
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ocaliva
I was prescribed it for a short time and my consultant had to seek permission as cost about £10,000 for a year’s supply in the UK. It didn’t work so tried betafibrates and they did - a fraction of the cost!
I was prescribed it for a short time and my consultant had to seek permission as cost about £10,000 for a year’s supply in the UK. It didn’t work so tried betafibrates and they did - a fraction of the cost!
Gioielli5
in
PBC Foundation
2 years ago
Cost of Ocaliva
Anyone knows what's the cost of
Ocaliva
in the US? I heard that it is extremely expensive. Thank you.
Anyone knows what's the cost of
Ocaliva
in the US? I heard that it is extremely expensive. Thank you.
iagra
in
PBCers Organization
2 years ago
Cost of Ocaliva
Anyone knows what is the real cost of
Ocaliva
? I looked at GoodRX, in the US, and it is $9000 for 30 pills (5mg). Wow. Thanks.
Anyone knows what is the real cost of
Ocaliva
? I looked at GoodRX, in the US, and it is $9000 for 30 pills (5mg). Wow. Thanks.
iagra
in
PBC Foundation
2 years ago
PBC and also suffering with Pancreatitis
Since then, I have been prescribed
Ocaliva
(Obetecholic acid), has anyone had great results with
Ocaliva
? Also, I have been suffering with bouts of Pancreatitis since 2011 , does anyone know if there is a connection between the two?
Since then, I have been prescribed
Ocaliva
(Obetecholic acid), has anyone had great results with
Ocaliva
? Also, I have been suffering with bouts of Pancreatitis since 2011 , does anyone know if there is a connection between the two?
Michcook54
in
PBC Foundation
2 years ago
Ocaliva
Hi all, I’ve been taking Urso for years and my doctor has decided it’s time to add
Ocaliva
. Does anyone currently take
Ocaliva
in addition to Urso? Has it helped?
Hi all, I’ve been taking Urso for years and my doctor has decided it’s time to add
Ocaliva
. Does anyone currently take
Ocaliva
in addition to Urso? Has it helped?
LKLee
in
British Liver Trust
2 years ago
Bezafibrate and weight gain
I was switched to Bezafibrate when I couldn’t tolerate Urso or
Ocaliva
. It’s absolutely fine. However I seem to be gaining weight. Has anyone else had this?
I was switched to Bezafibrate when I couldn’t tolerate Urso or
Ocaliva
. It’s absolutely fine. However I seem to be gaining weight. Has anyone else had this?
SuziS
in
PBC Foundation
2 years ago
How are you sleeping?
I take Urso,
Ocaliva
, Prednisone, Salagen and thyroid meds by prescription. I was taking Benadryl a couple days and it was perfect, out like a light. I read Benadryl may not be safe for long term use with liver disease/cirrhosis.
I take Urso,
Ocaliva
, Prednisone, Salagen and thyroid meds by prescription. I was taking Benadryl a couple days and it was perfect, out like a light. I read Benadryl may not be safe for long term use with liver disease/cirrhosis.
IAmTheGlue
in
PBC Foundation
2 years ago
Does the horrendous dry mouth ever go away with Elvanse - Lisdexamfetamine ??
Hello, I'm another very late diagnosed adult with both ASD & combined ADHD. Following my recent ADHD diagnosis I had hope that my life could improve with medication, however I've been on Lisdexamfetamine (Elvanse) two months now and the dry mouth, and lips are unbearable, I developed tongue sucking
Hello, I'm another very late diagnosed adult with both ASD & combined ADHD. Following my recent ADHD diagnosis I had hope that my life could improve with medication, however I've been on Lisdexamfetamine (Elvanse) two months now and the dry mouth, and lips are unbearable, I developed tongue sucking
RoadTrippin
in
CHADD's Adult ADHD Support
2 years ago
AMA negative but ANA positive
Now as well as Urso I have started on 5mg Obeticholic acid (
Ocaliva
) daily. Hopefully this will improve my LFT's. I would love to hear from others diagnosed as ANA positive.
Now as well as Urso I have started on 5mg Obeticholic acid (
Ocaliva
) daily. Hopefully this will improve my LFT's. I would love to hear from others diagnosed as ANA positive.
Liz_K
in
PBC Foundation
2 years ago
Options for PBC Itch?
I am an "incomplete" responder to Urso and
Ocaliva
(on both). I take Cholestyramine but in the past year the itching has gotten significantly worse where I scratch all night, am scaring up my arms and legs and tear the dead dry skin off the soles of my feet.
I am an "incomplete" responder to Urso and
Ocaliva
(on both). I take Cholestyramine but in the past year the itching has gotten significantly worse where I scratch all night, am scaring up my arms and legs and tear the dead dry skin off the soles of my feet.
Q8Cooper
in
PBC Foundation
3 years ago
Ocaliva
I’ve just started taking
Ocaliva
. I’ve been more fatigued than normal this week. Has anyone else found this ?
I’ve just started taking
Ocaliva
. I’ve been more fatigued than normal this week. Has anyone else found this ?
fudge13
in
PBC Foundation
3 years ago
PBC fatigue vaccine question
Ocaliva
was added a couple of years ago. I find my exhausted bad days are becoming more frequent and find this discouraging. Just wondering how others have faired after the vaccine. I’m absolutely terrified to get it. Thanks in advance.
Ocaliva
was added a couple of years ago. I find my exhausted bad days are becoming more frequent and find this discouraging. Just wondering how others have faired after the vaccine. I’m absolutely terrified to get it. Thanks in advance.
pbcgirl
in
PBC Foundation
3 years ago
Milk Thistle and Boldo
Started on
Ocaliva
Feb. 2021, Wanted to know if Milk Thistle and Boldo combination is ok to take.
Started on
Ocaliva
Feb. 2021, Wanted to know if Milk Thistle and Boldo combination is ok to take.
Germinal
in
PBC Foundation
3 years ago
Benzfibrate
The message I just received from my hep is this…benzfibrate is being studied with
ocaliva
. He will let me know when the trial is available. 😊
The message I just received from my hep is this…benzfibrate is being studied with
ocaliva
. He will let me know when the trial is available. 😊
gwillistexas
in
PBC Foundation
3 years ago
Clinical Trial
The protocol is I can’t be on
Ocaliva
. Well, we knew that. I told him I wouldn’t be very comfortable being without meds for 3 months. He mentioned possibly doing a trial with fibrates. I’m not too interested In that because it is basically a lipid lowering drug.
The protocol is I can’t be on
Ocaliva
. Well, we knew that. I told him I wouldn’t be very comfortable being without meds for 3 months. He mentioned possibly doing a trial with fibrates. I’m not too interested In that because it is basically a lipid lowering drug.
gwillistexas
in
PBC Foundation
3 years ago
Clinical Trials
I know I would have to be off
Ocaliva
for 3 months. Not too keen about being without my drug that long. Any help will be appreciated. Thanks Gail
I know I would have to be off
Ocaliva
for 3 months. Not too keen about being without my drug that long. Any help will be appreciated. Thanks Gail
gwillistexas
in
PBC Foundation
3 years ago
Ocaliva itching permanent?
Has anyone taken
Ocaliva
and took it and had gotten worsening itch? If so, when you stopped, did the itch lessen or is that side effect permanent?
Has anyone taken
Ocaliva
and took it and had gotten worsening itch? If so, when you stopped, did the itch lessen or is that side effect permanent?
Rimeru
in
PBC Foundation
3 years ago
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