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Experiences with
Ocaliva
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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
4 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
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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
2 MONTHS On Ocaliva
And then two months on
Ocaliva
. So, in the past two months on
Ocaliva
majority of numbers look good. But then they always were. Just my Alk-Phos has been routinely elevated. But on
Ocaliva
it seems to be going up. Not down😔. Now..
And then two months on
Ocaliva
. So, in the past two months on
Ocaliva
majority of numbers look good. But then they always were. Just my Alk-Phos has been routinely elevated. But on
Ocaliva
it seems to be going up. Not down😔. Now..
Ktltel
in
PBC Foundation
5 years ago
Taken off Ocaliva
After a year on Ocalvia my ALP level remains unchanged so I have been taken off. They seem stuck at 200. Now on Bezalip Mono to see if they will help. I feel fine, working 2 days a week, caring for granddaughters for another 2 and Secretary of my branch of the Labour Party as well as attending demos
After a year on Ocalvia my ALP level remains unchanged so I have been taken off. They seem stuck at 200. Now on Bezalip Mono to see if they will help. I feel fine, working 2 days a week, caring for granddaughters for another 2 and Secretary of my branch of the Labour Party as well as attending demos
Gioielli
in
PBC Foundation
5 years ago
Ocaliva
My mother is currently battling a liver condition and she is taking
Ocaliva
. but inside the US, its a pretty Pricey, and her Insurance no longer accepts it. i will try a different insurance, but i just thought i would ask around and see what other people might have to offer advice wise.
My mother is currently battling a liver condition and she is taking
Ocaliva
. but inside the US, its a pretty Pricey, and her Insurance no longer accepts it. i will try a different insurance, but i just thought i would ask around and see what other people might have to offer advice wise.
RobertCJ
in
PBC Foundation
5 years ago
Well....... Now what?
Albu... 3.5 After 30 days on 5mg
Ocaliva
& URSO My numbers aren't bad but I'm disappointed becsuse OCA didn't normalize my alk-phos. My numbers back in Oct. last year had spiked prompting my doctors to put me on
Ocaliva
. They took me off of my RA drug Sulfasalazine and my numbers when back down.
Albu... 3.5 After 30 days on 5mg
Ocaliva
& URSO My numbers aren't bad but I'm disappointed becsuse OCA didn't normalize my alk-phos. My numbers back in Oct. last year had spiked prompting my doctors to put me on
Ocaliva
. They took me off of my RA drug Sulfasalazine and my numbers when back down.
Ktltel
in
PBC Foundation
5 years ago
Burning mouth syndrome?
Hi everyone So recently I had been feeling less pain. Still couldn't jog around the park or anything and still tired most days, but been able to get out of bed in the morning, no real stiffness, even been able to excercise without a backlash💃 Actually felt almost normal. No clue why the sudden change
Hi everyone So recently I had been feeling less pain. Still couldn't jog around the park or anything and still tired most days, but been able to get out of bed in the morning, no real stiffness, even been able to excercise without a backlash💃 Actually felt almost normal. No clue why the sudden change
Alanna012
in
Fibromyalgia Action UK
5 years ago
Does it matter what time of the day I take my medication?
I’m on urso and
ocaliva
. I started a year ago for not responding to urso. In the beginning I gradually increased
ocaliva
dose and had no symptoms. A few months ago I developed the itch people talk about. Nightmare!
I’m on urso and
ocaliva
. I started a year ago for not responding to urso. In the beginning I gradually increased
ocaliva
dose and had no symptoms. A few months ago I developed the itch people talk about. Nightmare!
Gilz1702
in
PBC Foundation
5 years ago
Experiences of Ocaliva
Hi everyone, What’s your experience of being put on
Ocaliva
? My Gastro is considering putting me on
Ocaliva
as the Urso doesn’t seem to be working properly. I’ve googled the side effects and it seems to give conflicting advice.
Hi everyone, What’s your experience of being put on
Ocaliva
? My Gastro is considering putting me on
Ocaliva
as the Urso doesn’t seem to be working properly. I’ve googled the side effects and it seems to give conflicting advice.
Hils67
in
PBC Foundation
5 years ago
Are these ok for PBCers?
Also, I got approval for
Ocaliva
. Not sure the cost for me yet, but it's a green light from my insurance Co. I haven't picked up the prescription yet. I'm nervous about starting it and I'm going to do some research on here to read how others are getting on.
Also, I got approval for
Ocaliva
. Not sure the cost for me yet, but it's a green light from my insurance Co. I haven't picked up the prescription yet. I'm nervous about starting it and I'm going to do some research on here to read how others are getting on.
Ktltel
in
PBC Foundation
5 years ago
New to the group but not PBC.
I am now on Urso Azithaprine and
Ocaliva
and off the Prednisone. Doing well. Muscle pains and foggy moments but keeping positive. I enjoy reading these posts, they are very helpful!! Thanks!!
I am now on Urso Azithaprine and
Ocaliva
and off the Prednisone. Doing well. Muscle pains and foggy moments but keeping positive. I enjoy reading these posts, they are very helpful!! Thanks!!
Chulachela
in
PBC Foundation
5 years ago
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