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Ocaliva
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Please watch...
Yesterday Robert and Mo did an hour long webinar on the impact and facts surrounding
Ocaliva
not being available.
Yesterday Robert and Mo did an hour long webinar on the impact and facts surrounding
Ocaliva
not being available.
DonnaBoll
Administrator
in
PBC Foundation
2 months ago
Ocaliva and side effects
I'm 44, diagnosed at 38, tried urso a couple of years ago, the side effects were hair loss and swollen ankles, stopped, didn't take anything until April this year when I started
Ocaliva
. Before
Ocaliva
ALP199, ALT 83,FIBROSCAN 5.2kPa. Thank you.
I'm 44, diagnosed at 38, tried urso a couple of years ago, the side effects were hair loss and swollen ankles, stopped, didn't take anything until April this year when I started
Ocaliva
. Before
Ocaliva
ALP199, ALT 83,FIBROSCAN 5.2kPa. Thank you.
Beatris03
in
PBC Foundation
4 months ago
Ocaliva
Hi everybody, I’ve just been told that I should now start
ocaliva
aswell as urso I’m so worried about side effects after reading up on it, wondering how many of youse are getting on with it did you have lots of side effects ect!!
Hi everybody, I’ve just been told that I should now start
ocaliva
aswell as urso I’m so worried about side effects after reading up on it, wondering how many of youse are getting on with it did you have lots of side effects ect!!
Lena2011
in
PBC Foundation
5 months ago
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Elafibranor
My hepatologist would like me to try it considering
Ocaliva
isn’t doing what it did in the first few years of taking it. I am in the process of filling out forms for IPSEN. I have no prescription insurance because I never needed it. So I’m not sure if I will be approved. Thanks
My hepatologist would like me to try it considering
Ocaliva
isn’t doing what it did in the first few years of taking it. I am in the process of filling out forms for IPSEN. I have no prescription insurance because I never needed it. So I’m not sure if I will be approved. Thanks
gwillistexas
in
PBC Foundation
3 months ago
Bloating in stomach area, weight gain
I am understanding from the comments Urso and
Ocaliva
has side effects of weight gain, correct? Also, the fatigue is bad in morning and evenings. But I take Tramadol to control the fatigue and joint pain. I don’t know how I would be able to function with it.
I am understanding from the comments Urso and
Ocaliva
has side effects of weight gain, correct? Also, the fatigue is bad in morning and evenings. But I take Tramadol to control the fatigue and joint pain. I don’t know how I would be able to function with it.
6grand
in
PBC Foundation
1 month ago
PBC Foundation Update regarding Ocaliva
Obeticholic Acid in Europe 29/6/2024 We are issuing this guidance in response to the announcement made by the European Medicines Agency (EMA) on 28th June 2024 about the future of obeticholic acid (OCA or
Ocaliva
) in Europe.
Obeticholic Acid in Europe 29/6/2024 We are issuing this guidance in response to the announcement made by the European Medicines Agency (EMA) on 28th June 2024 about the future of obeticholic acid (OCA or
Ocaliva
) in Europe.
DonnaBoll
Administrator
in
PBC Foundation
3 months ago
Couldn't agree more..
I can't even begin to imagine how this decision to no longer offer
Ocaliva
to European patients will impact their lives. Many patients take this because of not being able to tolerate Urso or being a partial responder to it. Dr.
I can't even begin to imagine how this decision to no longer offer
Ocaliva
to European patients will impact their lives. Many patients take this because of not being able to tolerate Urso or being a partial responder to it. Dr.
DonnaBoll
Administrator
in
PBC Foundation
3 months ago
Wednesday's Word
Bezafibrates (fenofibrates in the US) have been used as well along with
Ocaliva
but neither of these drug groups are licensed yet. Right now they are being used in clinical trials.
Bezafibrates (fenofibrates in the US) have been used as well along with
Ocaliva
but neither of these drug groups are licensed yet. Right now they are being used in clinical trials.
DonnaBoll
Administrator
in
PBC Foundation
4 months ago
Experiences with urso, ocaliva and bezafibrate
I was just curious about your experiences taking a combination of udca,
ocaliva
10 mg and bezafibrates. Does it improve the itching? Did you notice any unwanted side effect from bezafibrate, e.g. in kidneys? Thanks for sharing and stay healthy and motivated!
I was just curious about your experiences taking a combination of udca,
ocaliva
10 mg and bezafibrates. Does it improve the itching? Did you notice any unwanted side effect from bezafibrate, e.g. in kidneys? Thanks for sharing and stay healthy and motivated!
nickey8
in
PBC Foundation
6 months ago
please read and take action
In a post from the other day, I shared with you a statement from the PBC Foundation about this crisis with the availability of
Ocaliva
. Robert has asked everyone to write to particular people to express your concern and dissatisfaction with this decision.
In a post from the other day, I shared with you a statement from the PBC Foundation about this crisis with the availability of
Ocaliva
. Robert has asked everyone to write to particular people to express your concern and dissatisfaction with this decision.
DonnaBoll
Administrator
in
PBC Foundation
3 months ago
Wednesday's Word
Often times,
Ocaliva
(another second line treatment) has greatly increased itching. PPAR drugs are sometimes used as an anti itch medication (Bezafibrate). There is increasing evidence though, that Bezafibrate can impair kidney function - it needs to be monitored closely.
Often times,
Ocaliva
(another second line treatment) has greatly increased itching. PPAR drugs are sometimes used as an anti itch medication (Bezafibrate). There is increasing evidence though, that Bezafibrate can impair kidney function - it needs to be monitored closely.
DonnaBoll
Administrator
in
PBC Foundation
5 months ago
What if?
No time is wasted taking nothing besides their Urso or
Ocaliva
. Every patient deserves equal chance of benefiting from a new drug potentially. Any thoughts on this? The lobbying of the pharmacuetical companies is crucial for this to happen. The PBC Foundation is committed to make this happen!
No time is wasted taking nothing besides their Urso or
Ocaliva
. Every patient deserves equal chance of benefiting from a new drug potentially. Any thoughts on this? The lobbying of the pharmacuetical companies is crucial for this to happen. The PBC Foundation is committed to make this happen!
DonnaBoll
Administrator
in
PBC Foundation
6 months ago
Seladelpar update
The IL-31, I mentioned earlier that causes the itch was increased with patients taking
Ocaliva
. 96% of those in the trial agreed to continue to the long term research. [u][i]
The very best news in their presentation about Seladelpar was that they are hoping to have it on the market 8/14/2024!!!!
The IL-31, I mentioned earlier that causes the itch was increased with patients taking
Ocaliva
. 96% of those in the trial agreed to continue to the long term research. [u][i]
The very best news in their presentation about Seladelpar was that they are hoping to have it on the market 8/14/2024!!!!
DonnaBoll
Administrator
in
PBC Foundation
6 months ago
another pharma update
Those on
Ocaliva
, greater than 50% don't see an improvement. 161 people were trialed. There was a placebo group used for half of them. They saw decreased alk phos and bilirubin. 51% had decreased alk phos after 1 year. 15% had completely normal lab results.
Those on
Ocaliva
, greater than 50% don't see an improvement. 161 people were trialed. There was a placebo group used for half of them. They saw decreased alk phos and bilirubin. 51% had decreased alk phos after 1 year. 15% had completely normal lab results.
DonnaBoll
Administrator
in
PBC Foundation
5 months ago
OCALIVA
Anyone is taking
OCALIVA
in addition to Ursodiol to lower ALP? Does it work? Do you have any side-effects? How long have you been taking it? My ALP jump quite a bit and my doctor mentioned
OCALIVA
. I don't like what I read about the side-effects. I'd appreciate your input. Thanks!
Anyone is taking
OCALIVA
in addition to Ursodiol to lower ALP? Does it work? Do you have any side-effects? How long have you been taking it? My ALP jump quite a bit and my doctor mentioned
OCALIVA
. I don't like what I read about the side-effects. I'd appreciate your input. Thanks!
iagra
in
PBC Foundation
11 months ago
OCALIVA
Anyone is taking
OCALIVA
in addition to Ursodiol to lower ALP? Does it work? Do you have any side-effects? How long have you been taking it? My ALP jump quite a bit and my doctor mentioned
OCALIVA
. I don't like what I read about the side-effects. I'd appreciate your input. Thanks!
Anyone is taking
OCALIVA
in addition to Ursodiol to lower ALP? Does it work? Do you have any side-effects? How long have you been taking it? My ALP jump quite a bit and my doctor mentioned
OCALIVA
. I don't like what I read about the side-effects. I'd appreciate your input. Thanks!
iagra
in
PBCers Organization
11 months ago
Urso stopped working
hi everyone Can anyone help Urso has stopped working and being put onto
Ocaliva
. i have been on Urso since diagnosed in 2012. Not sure what to expect ?? Thank you
hi everyone Can anyone help Urso has stopped working and being put onto
Ocaliva
. i have been on Urso since diagnosed in 2012. Not sure what to expect ?? Thank you
MrsFlee
in
PBC Foundation
11 months ago
Important from The PBC Foundation....
We are emphasising two things in this letter: 1) That Obeticholic Acid, aka OCA or
Ocaliva
continues to have a license, even if it is still conditional, as a treatment for PBC.
We are emphasising two things in this letter: 1) That Obeticholic Acid, aka OCA or
Ocaliva
continues to have a license, even if it is still conditional, as a treatment for PBC.
DonnaBoll
Administrator
in
PBC Foundation
4 months ago
Obeticholic Acid..weight gain
Has anyone noticed weight gain or not being able to lose weight since taking
Ocaliva
(Obeticholic Acid) please?
Has anyone noticed weight gain or not being able to lose weight since taking
Ocaliva
(Obeticholic Acid) please?
Oludeniz2017
in
British Liver Trust
1 year ago
update
So I suppose
Ocaliva
has worked wonders in my case. Stage 2 fibrosis at diagnosis in 2017 so it has decreased a little. happy to say I’m at ease now. I’ll definitely stick with my regular hepatologist.
So I suppose
Ocaliva
has worked wonders in my case. Stage 2 fibrosis at diagnosis in 2017 so it has decreased a little. happy to say I’m at ease now. I’ll definitely stick with my regular hepatologist.
gwillistexas
in
PBC Foundation
1 year ago
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