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Urso
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General health outlook
I'm also now on
Urso
but yet to see if I am responding to it. My question really to other people out there with PBC, has anyone with a similar profile to mine had PBC for many years and kept it under control and not started to develop other symptoms?
I'm also now on
Urso
but yet to see if I am responding to it. My question really to other people out there with PBC, has anyone with a similar profile to mine had PBC for many years and kept it under control and not started to develop other symptoms?
happy-days71
in
PBC Foundation
7 years ago
Taking part in the NHS march
Feeling a bit tired today but having lived in a country where you have to pay for all medicines at cost price then I believe I was marching for my life as I will never be able to afford the 240 pounds a month for my
URSO
!
Feeling a bit tired today but having lived in a country where you have to pay for all medicines at cost price then I believe I was marching for my life as I will never be able to afford the 240 pounds a month for my
URSO
!
Gioielli
in
PBC Foundation
7 years ago
Pain/discomfort after eating.
I suffered this a little pre diagnosis (11/2016) been on
urso
3 maths now wonder if it's connected. Stupidly ate a cream cake once suffered the consequences for about 20 mins after won't be doing that again. Scarily it puts you off eating.
I suffered this a little pre diagnosis (11/2016) been on
urso
3 maths now wonder if it's connected. Stupidly ate a cream cake once suffered the consequences for about 20 mins after won't be doing that again. Scarily it puts you off eating.
lizagood1
in
PBC Foundation
7 years ago
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Ocaliva UK
. 🙋 I was diagnosed with PBC last June at 44yrs old and although my LFT have improved on
Urso
, my AST,ALP remain in 400s + My consultant is starting me on Ocaliva and just wondered if anyone else in UK have tried this?
. 🙋 I was diagnosed with PBC last June at 44yrs old and although my LFT have improved on
Urso
, my AST,ALP remain in 400s + My consultant is starting me on Ocaliva and just wondered if anyone else in UK have tried this?
Starfish72
in
PBC Foundation
7 years ago
Just diagnosed (caught literally RIGHT when disease started)/ possibly linked to acetaminophen?
I know of
Urso
but I'm also under the impression it doesn't work for everyone. What are considered "decent" levels to be at for the lft? Will I know at my 3 month checkup whether I'll respond to
urso
or could it take additional time to respond?
I know of
Urso
but I'm also under the impression it doesn't work for everyone. What are considered "decent" levels to be at for the lft? Will I know at my 3 month checkup whether I'll respond to
urso
or could it take additional time to respond?
andrea83
in
PBC Foundation
7 years ago
Feeling a little frustrated
On
Urso
and my blood tests have stabilised. Have had episodes of liver pain and had a scan last yr which was clear. My husband has dragged me to Drs today (I'm a v reluctant patient) because I've got constant pain over my liver, sometimes sharp but usually griping like labour pain.
On
Urso
and my blood tests have stabilised. Have had episodes of liver pain and had a scan last yr which was clear. My husband has dragged me to Drs today (I'm a v reluctant patient) because I've got constant pain over my liver, sometimes sharp but usually griping like labour pain.
Caroline-12
in
PBC Foundation
7 years ago
Ursodiol prices
Urso
is not covered by my medical insurance, because it is not considered "preventive". It is very expensive. For generic brand, I pay about $500/3mo supply, 1000mg/day. I wonder if this medication covered in other countries? Is it expensive or cheaper than in the US?
Urso
is not covered by my medical insurance, because it is not considered "preventive". It is very expensive. For generic brand, I pay about $500/3mo supply, 1000mg/day. I wonder if this medication covered in other countries? Is it expensive or cheaper than in the US?
iagra
in
PBC Foundation
7 years ago
Finally had Hepatology appt Today after 3 months of waiting.....
He wants me to try the
URSO
again at 1/2 the dose and slowly work up this time. If I have the same reaction, he will try another
URSO
that is made with different fillers. We will see. 😧 In the meantime, I guess I'm not a wait and watch type of person.
He wants me to try the
URSO
again at 1/2 the dose and slowly work up this time. If I have the same reaction, he will try another
URSO
that is made with different fillers. We will see. 😧 In the meantime, I guess I'm not a wait and watch type of person.
Ktltel
in
PBC Foundation
7 years ago
Side effects of Ocaliva
My Alt and proteins have always been higher than standard despite
Urso
but not too high. Latest liver biopsy showed inflammation to the liver. So my gastroenterologist prescribed Ocaliva 5mg daily along with 1000
Urso
. I took it for two days and I am having some side effects.
My Alt and proteins have always been higher than standard despite
Urso
but not too high. Latest liver biopsy showed inflammation to the liver. So my gastroenterologist prescribed Ocaliva 5mg daily along with 1000
Urso
. I took it for two days and I am having some side effects.
Mg40
in
PBC Foundation
7 years ago
LFT's have returned to normal...do I still have PBC?
My question is...is this the
URSO
(or herbal stuff) working...or is there a chance I don't have PBC. Also, can PBC be reversed if caught early enough as it seems I was luckily caught very early. I'm also wondering whether it's the
URSO
causing the itching I'm getting.
My question is...is this the
URSO
(or herbal stuff) working...or is there a chance I don't have PBC. Also, can PBC be reversed if caught early enough as it seems I was luckily caught very early. I'm also wondering whether it's the
URSO
causing the itching I'm getting.
Hils67
in
PBC Foundation
7 years ago
Skin pigment changes
I started
URSO
early January of this year. I had horrible itching (how I got the ball rolling on my diagnosis). I think
URSO
added to it. My doctor started me on Prevalite and within a week my itching had gotten better...not great but better.
I started
URSO
early January of this year. I had horrible itching (how I got the ball rolling on my diagnosis). I think
URSO
added to it. My doctor started me on Prevalite and within a week my itching had gotten better...not great but better.
marty102
in
PBC Foundation
7 years ago
Ocaliva
This is a new drug for people that have PBC that take
URSO
and it doesn't work for them. Just checking if anyone has been taking this drug. I am having extreme itching.
This is a new drug for people that have PBC that take
URSO
and it doesn't work for them. Just checking if anyone has been taking this drug. I am having extreme itching.
Shirl5
in
PBC Foundation
7 years ago
Fatigue
I was diagnosed a year and a half ago and take
urso
since about six months before diagnosis. I experience all the regular symptoms i.e. itching, fatigue, and severe joint pain. As of lately though the fatigue, and pain has gotten so extreme that I can barely keep myself up during the day.
I was diagnosed a year and a half ago and take
urso
since about six months before diagnosis. I experience all the regular symptoms i.e. itching, fatigue, and severe joint pain. As of lately though the fatigue, and pain has gotten so extreme that I can barely keep myself up during the day.
Cstar1079
in
PBC Foundation
7 years ago
Anti malaria medication
Hi all I've avoided taking any medication (besides
Urso
) since being diagnosed with PBC three years ago. I am perhaps over cautious but am always nervous that my liver won't absorb them properly. I am now planning a trip where I've been advised to take anti malaria pills.
Hi all I've avoided taking any medication (besides
Urso
) since being diagnosed with PBC three years ago. I am perhaps over cautious but am always nervous that my liver won't absorb them properly. I am now planning a trip where I've been advised to take anti malaria pills.
Itchy111
in
PBC Foundation
7 years ago
So tired and itchy and tired of being itchy
Hi all, I was diagnosed with PBC last summer and put on 1500 mg of
Urso
a day, I also take cholestyramine in the mornings. They could not advise of what stage I am in because the doctor who did my biopsy did not take a big enough sample (Ugh).
Hi all, I was diagnosed with PBC last summer and put on 1500 mg of
Urso
a day, I also take cholestyramine in the mornings. They could not advise of what stage I am in because the doctor who did my biopsy did not take a big enough sample (Ugh).
AllieCraw
in
PBC Foundation
7 years ago
Any one can help
How long dose
urso
take to work then you feel better? My husband started
urso
put He feel abdominal pain and think that is side effects of
urso
How long dose
urso
take to work then you feel better? My husband started
urso
put He feel abdominal pain and think that is side effects of
urso
Mysa1981
in
PBC Foundation
7 years ago
Urso users
If all
urso
users have encountered problems getting
urso
its because you chemist your using is Boots. I had this problem about a year ago its because Boots is now an American company and only use one supplier. Change to a no chain chemist who use many suppliers. I've never had any problems since.
If all
urso
users have encountered problems getting
urso
its because you chemist your using is Boots. I had this problem about a year ago its because Boots is now an American company and only use one supplier. Change to a no chain chemist who use many suppliers. I've never had any problems since.
Jude1
in
PBC Foundation
7 years ago
Has anyone ever "gotten off" Urso?
I take natural thyroid and
Urso
. I am doing well so far. I often read of people with serious diseases such as Crohns or Lupus who claim to be off all medicines by adhering to strict diet (the author of "Against All Grain" - Danielle Walker) .
I take natural thyroid and
Urso
. I am doing well so far. I often read of people with serious diseases such as Crohns or Lupus who claim to be off all medicines by adhering to strict diet (the author of "Against All Grain" - Danielle Walker) .
Sissymcc
in
PBC Foundation
7 years ago
Urso side effect?
Anyone have any idea/suggestion as to whether this rash is possibly connected to the
Urso
? Thank you X
Anyone have any idea/suggestion as to whether this rash is possibly connected to the
Urso
? Thank you X
Thenoise
in
PBC Foundation
7 years ago
URSO! Manufacturing issue
About to run out of
URSO
. Went to collect my prescription from Boots, only to be told no stock as there is a manufacturing issue. Anyone else had this ? No indication of when it will be resolved.
About to run out of
URSO
. Went to collect my prescription from Boots, only to be told no stock as there is a manufacturing issue. Anyone else had this ? No indication of when it will be resolved.
fred6577
in
PBC Foundation
7 years ago
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