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Ocaliva
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Pbc trigger and possible treatment
My thinking is that Urso/
Ocaliva
is only flushing the liver and is lowering the effect of our Nkt cells actions but this is not what we really want. i think that we want to stop Nkt to do what they are doing So if Nkt is triggered by a bacteria like : Escherichia coli Mycoplasma.
My thinking is that Urso/
Ocaliva
is only flushing the liver and is lowering the effect of our Nkt cells actions but this is not what we really want. i think that we want to stop Nkt to do what they are doing So if Nkt is triggered by a bacteria like : Escherichia coli Mycoplasma.
Andrei
in
PBC Foundation
6 years ago
Crawling feeling on right side of my head
I am on Urso and
OCaliva
. My itch and fatigue are in control but Since last year I got this creepy thing. Has anyone experienced this?
I am on Urso and
OCaliva
. My itch and fatigue are in control but Since last year I got this creepy thing. Has anyone experienced this?
Mg40
in
PBC Foundation
6 years ago
Any connection between dairy and itching?
Happy Friday everyone - PS i’ve Been on Urso since 1/17 and
ocaliva
since 10/17.
Happy Friday everyone - PS i’ve Been on Urso since 1/17 and
ocaliva
since 10/17.
Ottley3
in
PBC Foundation
6 years ago
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Ocaliva, dosage, elevated cholesterol
Or seen the liver enzymes elevate on
ocaliva
? Thanks. PS I do itch already from
ocaliva
.
Or seen the liver enzymes elevate on
ocaliva
? Thanks. PS I do itch already from
ocaliva
.
Ottley3
in
PBC Foundation
6 years ago
Update:
Well, the Urso hasn’t worked like before, so my doctor has added
Ocaliva
to my list of medication. I started taking it once a day and had the itching side effect. So, instead of wanting to literally peel off the first layer of skin, I wanted to go deeper.
Well, the Urso hasn’t worked like before, so my doctor has added
Ocaliva
to my list of medication. I started taking it once a day and had the itching side effect. So, instead of wanting to literally peel off the first layer of skin, I wanted to go deeper.
Pamela372
in
PBCers Organization
6 years ago
Cost of Ocaliva in the US.
Pharmacy couldn't give me any idea of cost with my insurance...but the look on the pharmacy clerks face was priceless when she looked up the cost
Ocaliva
. Thanks.
Pharmacy couldn't give me any idea of cost with my insurance...but the look on the pharmacy clerks face was priceless when she looked up the cost
Ocaliva
. Thanks.
kp1234
in
PBC Foundation
6 years ago
Little discouraged 😕
Haven’t talked to Dr yet but wouldn’t surprise me if he ups my
Ocaliva
to 10 mg. Just wanted to share. 😊
Haven’t talked to Dr yet but wouldn’t surprise me if he ups my
Ocaliva
to 10 mg. Just wanted to share. 😊
gwillistexas
in
PBC Foundation
6 years ago
Reversal of fortune in bloodwork but staying positive
Started
ocaliva
in November - strong improvement in enzymes initially then more gradual- bloodwork 3/28/18 had ALP 188 (down from high 300s at diagnosis and AST ALT almost normal. Bloodwork from 6/20/18 so surprising and disappointed. Almost back to where I was pre
ocaliva
.
Started
ocaliva
in November - strong improvement in enzymes initially then more gradual- bloodwork 3/28/18 had ALP 188 (down from high 300s at diagnosis and AST ALT almost normal. Bloodwork from 6/20/18 so surprising and disappointed. Almost back to where I was pre
ocaliva
.
Ottley3
in
PBC Foundation
6 years ago
Does anyone know if you can drink alcohol while taking Ocaliva?
I’ve not been told I can’t but the last 2 times I’ve had a few drinks the next day I come out with a horrible sun burn like rash on my chest???? Just wondered if anyone can shed a bit of light or had similar experience, I’ve been taking this for about 6 weeks now TIA
I’ve not been told I can’t but the last 2 times I’ve had a few drinks the next day I come out with a horrible sun burn like rash on my chest???? Just wondered if anyone can shed a bit of light or had similar experience, I’ve been taking this for about 6 weeks now TIA
Ktb32
in
PBC Foundation
6 years ago
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
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
7 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
7 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
7 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
7 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
7 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
7 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
7 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
7 years ago
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