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Experiences with
Ocaliva
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PBC and Autoimmune Hepatitis
Labs not improving over the years dispite using Urso and
Ocaliva
combined. Now trying steroids and bone marrow suppressants incase I have autoimmune hepatitis. My Alt and Ast stabalized but still have elevated alk phos. Any body out there with both PBC and Auto-immune hepatitis?
Labs not improving over the years dispite using Urso and
Ocaliva
combined. Now trying steroids and bone marrow suppressants incase I have autoimmune hepatitis. My Alt and Ast stabalized but still have elevated alk phos. Any body out there with both PBC and Auto-immune hepatitis?
Q8Cooper
in
PBC Foundation
3 years ago
LiverMD
He wants to start me on
Ocaliva
. It’s in the insurance Approval stage. Anyway, has anyone tried LiverMD and does it help at all? And what side effects to
Ocaliva
? I am a 59 year old female. Thanks!!!!
He wants to start me on
Ocaliva
. It’s in the insurance Approval stage. Anyway, has anyone tried LiverMD and does it help at all? And what side effects to
Ocaliva
? I am a 59 year old female. Thanks!!!!
freebyrd1707
in
PBCers Organization
4 years ago
PBC and Tylenol
Now early stage 4 , been taking Urso which worked for years but now going to also start on
Ocaliva
next month. Recently I was in a major car accident and have a ruptured spleen, which is on the mend, but a huge hematoma beside it which is causing me incredible pain.
Now early stage 4 , been taking Urso which worked for years but now going to also start on
Ocaliva
next month. Recently I was in a major car accident and have a ruptured spleen, which is on the mend, but a huge hematoma beside it which is causing me incredible pain.
BCer
in
PBC Foundation
4 years ago
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Can a Dr. in the U.S. write a script for Ocaliva for a NASH patient? Is it prohibited by law &/or employer?
Ocaliva
& Nash Treatment
Ocaliva
& Nash Treatment
Troutwhisperer
in
Living with Fatty Liver and NASH
4 years ago
Ocaliva
I am now on
Ocaliva
. I did not want to take this drug prefer a safer drug that has been around longer. Anyone else on
Ocaliva
that can share their experience? Positive results? Side effects you encountered?
I am now on
Ocaliva
. I did not want to take this drug prefer a safer drug that has been around longer. Anyone else on
Ocaliva
that can share their experience? Positive results? Side effects you encountered?
AC025
in
PBCers Organization
4 years ago
ocaliva
Hi just wanted to ask if any one is taking
ocaliva
and already got cirrhosis of the liver i didnt think it was to be taken once pbc was advanced to this stage really need to know and if any one taking it with cirrhosis how you doing taking it many thanks
Hi just wanted to ask if any one is taking
ocaliva
and already got cirrhosis of the liver i didnt think it was to be taken once pbc was advanced to this stage really need to know and if any one taking it with cirrhosis how you doing taking it many thanks
cavi
in
PBC Foundation
4 years ago
Help Advance Primary Biliary Cholangitis Research from Home and Earn $50 - PBC Volunteers Needed for At-Home Research
Volunteers with Primary Biliary Cholangitis currently taking
Ocaliva
are needed to participate in a research study from home. If you qualify, you can contribute to the development of new treatments and earn $50 for your time.
Volunteers with Primary Biliary Cholangitis currently taking
Ocaliva
are needed to participate in a research study from home. If you qualify, you can contribute to the development of new treatments and earn $50 for your time.
CathyPBC
Administrator
in
PBCers Organization
4 years ago
Feeling Discouraged
Well, I have always been one of the first to brag about
Ocaliva
. Not so sure now. Alk Phos has gone up a little my last two labs. It is 161. Fibroscan one year ago was 9. Now 12. Hard to believe it increased that much in one year when all was going good.
Well, I have always been one of the first to brag about
Ocaliva
. Not so sure now. Alk Phos has gone up a little my last two labs. It is 161. Fibroscan one year ago was 9. Now 12. Hard to believe it increased that much in one year when all was going good.
gwillistexas
in
PBC Foundation
4 years ago
Is there an alternative to Ursosan
Have heard of another drug caller,(I think)
Ocaliva
which doesn't have this side affect. Has anyone else tried it?
Have heard of another drug caller,(I think)
Ocaliva
which doesn't have this side affect. Has anyone else tried it?
Ash322
in
PBC Foundation
4 years ago
Anyone suffer dry/burning mouth particularly interested if you take Xeljanz.
This started about March with dry mouth before extending to burning mouth over the past 6 weeks. It effects all my mouth including tongue, gums and throat. I'm also getting ulcers on both sides of my tongue. When it's bad it makes my whole head hurt and my tongue and throat feel swollen. Eating offers
This started about March with dry mouth before extending to burning mouth over the past 6 weeks. It effects all my mouth including tongue, gums and throat. I'm also getting ulcers on both sides of my tongue. When it's bad it makes my whole head hurt and my tongue and throat feel swollen. Eating offers
Hidden
in
NRAS
4 years ago
Time to get Ocaliva
Does anyone have experience of how long it takes to get
Ocaliva
? I saw consultant on 12th December, he said I will be going on
Ocaliva
and will have a phone call from the drug company. I’ve heard nothing. I rang the specialist nurse and consultant secretary. All I get is they will chase it up.
Does anyone have experience of how long it takes to get
Ocaliva
? I saw consultant on 12th December, he said I will be going on
Ocaliva
and will have a phone call from the drug company. I’ve heard nothing. I rang the specialist nurse and consultant secretary. All I get is they will chase it up.
Cilgerran
in
PBC Foundation
5 years ago
Taken off Ocaliva today.
Said if
Ocaliva
is the problem then it’s doing more harm than good. Low weight is hard on liver. I take no more for a month and see him to check wright. He feels my liver is in good condition and hopefully one month off that drug won’t hurt anything.
Said if
Ocaliva
is the problem then it’s doing more harm than good. Low weight is hard on liver. I take no more for a month and see him to check wright. He feels my liver is in good condition and hopefully one month off that drug won’t hurt anything.
gwillistexas
in
PBC Foundation
5 years ago
Weight Loss
You see why I’m concerned about weight loss and
ocaliva
? Plainly stated from Intercept about reporting weight loss to Dr. What’s these guy’s problems anyway. Do they just ignore warnings...
You see why I’m concerned about weight loss and
ocaliva
? Plainly stated from Intercept about reporting weight loss to Dr. What’s these guy’s problems anyway. Do they just ignore warnings...
gwillistexas
in
PBC Foundation
5 years ago
Is it possible for APL to fall 118 points in just one month?
My levels dropped from over 800 in 2013 to 200, where they have remained for the past 4 years, even though being on
Ocaliva
for one of these years. I was then given Betafibrate to try 6 months ago. Saw my wonderful Prof last month and APL was 209.
My levels dropped from over 800 in 2013 to 200, where they have remained for the past 4 years, even though being on
Ocaliva
for one of these years. I was then given Betafibrate to try 6 months ago. Saw my wonderful Prof last month and APL was 209.
Gioielli
in
PBC Foundation
5 years ago
Fibroscan
So apparently
ocaliva
is making progress with fibrosis. 😊
So apparently
ocaliva
is making progress with fibrosis. 😊
gwillistexas
in
PBC Foundation
5 years ago
Did anyone else get energy/insomnia with Ocaliva?
I'm well aware of the negative side effects of
Ocaliva
, but has anyone else had a Prednisone-like energy boost? I don't know how else to describe it. I took it for the first time last night after dinner and 5 am I'm AWAKE awake. My alarm does not go off until 7 so it's weird.
I'm well aware of the negative side effects of
Ocaliva
, but has anyone else had a Prednisone-like energy boost? I don't know how else to describe it. I took it for the first time last night after dinner and 5 am I'm AWAKE awake. My alarm does not go off until 7 so it's weird.
IAmTheGlue
in
PBC Foundation
5 years ago
Sore eyes
I am on 10mg of
Ocaliva
a day this was increased about 10 weeks ago that is the only medication I am on for PBC. My gp did give me drops and something to put in at night but they don’t seem to be helping. I really am at my wits end.
I am on 10mg of
Ocaliva
a day this was increased about 10 weeks ago that is the only medication I am on for PBC. My gp did give me drops and something to put in at night but they don’t seem to be helping. I really am at my wits end.
Jayne1863
in
PBC Foundation
5 years ago
Freekama10
Can i be in the sun when taking
ocaliva
and ursodiol
Can i be in the sun when taking
ocaliva
and ursodiol
Freekama10
in
PBC Foundation
5 years ago
Ocaliva financial assistance
Dr's appointment I was told if ALP didn't improve Dr. would add another med, probably
Ocaliva
. Can anyone please share their experience getting financial assistance (United States) to pay for this medication.
Dr's appointment I was told if ALP didn't improve Dr. would add another med, probably
Ocaliva
. Can anyone please share their experience getting financial assistance (United States) to pay for this medication.
kp1234
in
PBC Foundation
5 years ago
Has anyone had a low white blood cell count as a result of being on Ocaliva?
It looks like her white blood cell count started fluctuating around 8 weeks after starting
Ocaliva
and more recently (within the last 2 months) it has dropped considerably. Just wondering if anyone else who is taking
Ocaliva
has seen something similar to this? Or if its just a coincidence.
It looks like her white blood cell count started fluctuating around 8 weeks after starting
Ocaliva
and more recently (within the last 2 months) it has dropped considerably. Just wondering if anyone else who is taking
Ocaliva
has seen something similar to this? Or if its just a coincidence.
djws
in
PBC Foundation
5 years ago
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