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Urso
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Newly Diagnosed
I was put on
URSO
immediately and I'm taking 1500 mg / day. I'm scared. I have a follow up appt. June 23rd after more blood tests so my dr. can monitor the progression of the PBC. My liver biopsy staged me at stage 1-2.
I was put on
URSO
immediately and I'm taking 1500 mg / day. I'm scared. I have a follow up appt. June 23rd after more blood tests so my dr. can monitor the progression of the PBC. My liver biopsy staged me at stage 1-2.
Becca75
in
PBC Foundation
8 years ago
Colon cleanse
I have PBC and Sjogrens and I take
Urso
. Has anyone else done one? Thanks kandiepat
I have PBC and Sjogrens and I take
Urso
. Has anyone else done one? Thanks kandiepat
kandiepat
in
PBC Foundation
8 years ago
Study for the new med Obetichiolic Acid and my experience
If you are not having symptoms
URSO
is optional. There are usually assistance programs from the Drug Company. Have you tried to go that route? My answer back: No Maam I haven't. My GI is insisting that I go on
Urso
, guess I'm confused as to whether I actually need it or not.
If you are not having symptoms
URSO
is optional. There are usually assistance programs from the Drug Company. Have you tried to go that route? My answer back: No Maam I haven't. My GI is insisting that I go on
Urso
, guess I'm confused as to whether I actually need it or not.
kauthement
in
PBC Foundation
8 years ago
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Rapid progression of PBC and scared
I take 2000mg
urso
b12 injections and 5000 MCG daily, 1200 MCG folic acid, 40 mg methadone for pain, and phenagren and or zolfran for nausea/vomiting.
I take 2000mg
urso
b12 injections and 5000 MCG daily, 1200 MCG folic acid, 40 mg methadone for pain, and phenagren and or zolfran for nausea/vomiting.
stoowill
in
PBC Foundation
8 years ago
Urso
Then came
Urso
.😣. Now I itch at night, feel nauseous and have problems with anger. Too much of a coincidence for my liking. Has anyone heard of Low dose naltrexone?
Then came
Urso
.😣. Now I itch at night, feel nauseous and have problems with anger. Too much of a coincidence for my liking. Has anyone heard of Low dose naltrexone?
LindyRich
in
PBC Foundation
8 years ago
More confused than ever!
The consultant gastroenterologist (not a liver specialist) thought it was PBC and prescribed
Urso
. Within several weeks my LFT numbers went right down. Now he is saying that it's probably not PBC and to no longer take
Urso
.
The consultant gastroenterologist (not a liver specialist) thought it was PBC and prescribed
Urso
. Within several weeks my LFT numbers went right down. Now he is saying that it's probably not PBC and to no longer take
Urso
.
tinypixie
in
PBC Foundation
8 years ago
Dairy before and after
How important is it to stay away from dairy products 2 hours before and after taking the
Urso
? I only have a little bit of lactose free milk in my coffee and sometimes, specially in winter I want a last cuppa, but then can't because of the 2 hour thing. Would that make such a big difference?
How important is it to stay away from dairy products 2 hours before and after taking the
Urso
? I only have a little bit of lactose free milk in my coffee and sometimes, specially in winter I want a last cuppa, but then can't because of the 2 hour thing. Would that make such a big difference?
Lekkerbek
in
PBC Foundation
8 years ago
side effects from Urso
I've read that most people do not have reactions to the
urso
but I think I am having them because that's the only thing that has changed for me. I have had raging headaches that do go away with Tylenol, although I take that very sparingly.
I've read that most people do not have reactions to the
urso
but I think I am having them because that's the only thing that has changed for me. I have had raging headaches that do go away with Tylenol, although I take that very sparingly.
littysgirl
in
PBC Foundation
8 years ago
Maybe NOT PBC......perhaps Nodular Regenerative Hyperplasia?
If I didn't say it before, they are keeping me on the
urso
. Anyone on here have Nodular Regenerative Hyperplasia? Be well, friends.
If I didn't say it before, they are keeping me on the
urso
. Anyone on here have Nodular Regenerative Hyperplasia? Be well, friends.
JennyCville
in
PBC Foundation
8 years ago
PBC - sinus problems
Now on
Urso
and levothyroxine. Suffering badly with sinus trouble any tips to relieve this other than steam inhaling.
Now on
Urso
and levothyroxine. Suffering badly with sinus trouble any tips to relieve this other than steam inhaling.
Hazel64
in
PBC Foundation
8 years ago
Urso & flatulence!
Hi, Bit of a delicate question but has anyone experienced excessive flatulence since starting on
Urso
and if so have you found anything to help combat it that you can take with the
Urso
?
Hi, Bit of a delicate question but has anyone experienced excessive flatulence since starting on
Urso
and if so have you found anything to help combat it that you can take with the
Urso
?
Heleno
in
PBC Foundation
8 years ago
Liver Flare
After going on
URSO
, as long as I watch what I eat for the most part, my liver has stopped hurting. But a week or so ago, I started having liver pain again. I will have some pain before my period, but it stops after I am over it. But this time it has really been bothering me.
After going on
URSO
, as long as I watch what I eat for the most part, my liver has stopped hurting. But a week or so ago, I started having liver pain again. I will have some pain before my period, but it stops after I am over it. But this time it has really been bothering me.
NotorDJP
in
PBC Foundation
8 years ago
Latest AMA results
I have been on
URSO
for approx 2 years. Should the AMA be this high? No response from GP or liver specialist so far.
I have been on
URSO
for approx 2 years. Should the AMA be this high? No response from GP or liver specialist so far.
Seajeanie
in
PBC Foundation
8 years ago
Confused
I just would like to sleep, I'm taking
urso
they make me hot and sickly, I'm sorry if I am moaning but I'm quite confused by it all.
I just would like to sleep, I'm taking
urso
they make me hot and sickly, I'm sorry if I am moaning but I'm quite confused by it all.
Leighton56
in
PBC Foundation
8 years ago
Should I apply for PIP?
Urso
is working which is great but I know that this is only slowing down this crazy disease. My family suggested that I apply for PIP and now waiting for the form but worrying about it all the time. Have any of you applied and what was the outcome?
Urso
is working which is great but I know that this is only slowing down this crazy disease. My family suggested that I apply for PIP and now waiting for the form but worrying about it all the time. Have any of you applied and what was the outcome?
CathieG
in
British Liver Trust
8 years ago
Normal ALP at last! (urso+bezafibrate)
First year
URSO
only, and bilirubin etc was back to normal and itching disappeared directly. However, alkaline phosphatase (ALP) was still way high. Then USRO+budesonide was tested, no difference. Last 3 month with
URSO
+bezafibrate.
First year
URSO
only, and bilirubin etc was back to normal and itching disappeared directly. However, alkaline phosphatase (ALP) was still way high. Then USRO+budesonide was tested, no difference. Last 3 month with
URSO
+bezafibrate.
mattiasw
in
PBC Foundation
8 years ago
Waiting for ultrasound results why spleen and ovaries?
I had all enzymes elevated, and a positive AMA; I been taking
Urso
together with Calcium and Vit D since late 2012.
I had all enzymes elevated, and a positive AMA; I been taking
Urso
together with Calcium and Vit D since late 2012.
lila1974
in
PBC Foundation
8 years ago
Just need to vent
Unfortunately I'm not a good responder to
urso
. I stay tired all the time. What really gets me is my husband. He doesn't understand any of it and doesn't seem to try. All I hear out of him is if you would sleep all night you would feel better and not be so tired. I wish that worked.
Unfortunately I'm not a good responder to
urso
. I stay tired all the time. What really gets me is my husband. He doesn't understand any of it and doesn't seem to try. All I hear out of him is if you would sleep all night you would feel better and not be so tired. I wish that worked.
breekins
in
PBC Foundation
8 years ago
Finally seen Gastro
I went to gastro this week and was given a higher dose of
urso
. My ALP has been rising instead of lowering or leveling. She also gave me a higher dose of hydroxyzine for the itching. I have been on vit D for a month now. I still have constant muscle and joint pain.
I went to gastro this week and was given a higher dose of
urso
. My ALP has been rising instead of lowering or leveling. She also gave me a higher dose of hydroxyzine for the itching. I have been on vit D for a month now. I still have constant muscle and joint pain.
Lisa15
in
PBC Foundation
8 years ago
First blood draw after diagnosis, and pain...
Had hepatic function lab draw last week (He wouldn't test AMA or GGT, as they wouldn't be dropping yet after surgery. ) I began the
urso
on January 14. Results were encouraging for a first look: Alt 72, Ast 49, Alk Phos 156.
Had hepatic function lab draw last week (He wouldn't test AMA or GGT, as they wouldn't be dropping yet after surgery. ) I began the
urso
on January 14. Results were encouraging for a first look: Alt 72, Ast 49, Alk Phos 156.
JennyCville
in
PBC Foundation
8 years ago
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