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Hello
I was dx with PBC in Nov 2016 although I believe I've had it for several years and was misdiagnosed. In September of 2016 I had blood work ran before I had surgery to remove my right ovary and appendix (this was my 8th surgery in the past 6 years) this blood test showed my ast at 406 and alt at 397!
I was dx with PBC in Nov 2016 although I believe I've had it for several years and was misdiagnosed. In September of 2016 I had blood work ran before I had surgery to remove my right ovary and appendix (this was my 8th surgery in the past 6 years) this blood test showed my ast at 406 and alt at 397!
Pbcgirl28
in
PBC Foundation
7 years ago
Good News!!
Hi PBC family, PBC is a rollercoaster ride isn't it? But for now I'm gonna enjoy my good news. Had some extensive labs done recently. My liver had been aching as well as terrible muscle aches too. I have to be on RA drugs that can complicate the whole liver issue... anyway, after 2 rounds of steroids
Hi PBC family, PBC is a rollercoaster ride isn't it? But for now I'm gonna enjoy my good news. Had some extensive labs done recently. My liver had been aching as well as terrible muscle aches too. I have to be on RA drugs that can complicate the whole liver issue... anyway, after 2 rounds of steroids
Ktltel
in
PBC Foundation
7 years ago
PBC Antibody GP 210 What does it mean?
The reason for the title is mainly for people who may come along and have my diagnosis, also it will hopefully show up in Google searches, but not be as scary as the medical papers and Wikipedia. I have got a few answers about it. Addenbrookes have confirmed that it is a more progressive/aggressive
The reason for the title is mainly for people who may come along and have my diagnosis, also it will hopefully show up in Google searches, but not be as scary as the medical papers and Wikipedia. I have got a few answers about it. Addenbrookes have confirmed that it is a more progressive/aggressive
Jo_Br
in
PBC Foundation
7 years ago
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Burning/tingling mouth & throat.
I have been struggling with a burning/ tingling sensation in my mouth and throat. This has been going on for a month or so. It feels like if I was so super dehydrated, and no matter how much water I consume, it won't go away. I am stage one PBC. I am on Urso but only 25g/day Is this a PBC thing or something
I have been struggling with a burning/ tingling sensation in my mouth and throat. This has been going on for a month or so. It feels like if I was so super dehydrated, and no matter how much water I consume, it won't go away. I am stage one PBC. I am on Urso but only 25g/day Is this a PBC thing or something
Terralynn
in
PBC Foundation
7 years ago
Pbc and cholesterol bumps
Hello I new to this blog. I was diagnosed with PCB and overlapping AMA. Beside the Pcb I also have large cholesterol bumps all over my body for two years. Does anyone have Pcb and cholesterol bumps too? How did you get rid of them? I will be seeing a cardio doctor in September to see if he can help me
Hello I new to this blog. I was diagnosed with PCB and overlapping AMA. Beside the Pcb I also have large cholesterol bumps all over my body for two years. Does anyone have Pcb and cholesterol bumps too? How did you get rid of them? I will be seeing a cardio doctor in September to see if he can help me
Prettyeyes79
in
PBC Foundation
7 years ago
Confused with PBC and doctors
Hello, I was diagnoses with PBC in 2015 and put on URSO. The URSO seemed to make me very bloated, 3 months pregnant bloated. My GI has taken me off of URSO and made it seem like it wasn't any big deal as PBC is a slow progressing disease. My concern is that in 2015 I had a ultra sound with fibro spect
Hello, I was diagnoses with PBC in 2015 and put on URSO. The URSO seemed to make me very bloated, 3 months pregnant bloated. My GI has taken me off of URSO and made it seem like it wasn't any big deal as PBC is a slow progressing disease. My concern is that in 2015 I had a ultra sound with fibro spect
mek4wlk
in
PBC Foundation
7 years ago
Urso
I am newly diagnosed and my doctor told me the medication that they use to prescribe has been taken off the market here in the U.S. Does anyone know if the Urso medication I'm reading about folks taking is unavailable in the U.S.?
I am newly diagnosed and my doctor told me the medication that they use to prescribe has been taken off the market here in the U.S. Does anyone know if the Urso medication I'm reading about folks taking is unavailable in the U.S.?
Mary2017
in
PBC Foundation
7 years ago
Call to arms...
https://www.surveymonkey.co.uk/r/KJZRNM6 Asking you to take part in this survey (if you haven't already done so). This is the last survey this year, but we really REALLY need you to take part. The more numbers we have, the stronger our voice. If we can say we had 1000 responses, that gives us the
https://www.surveymonkey.co.uk/r/KJZRNM6 Asking you to take part in this survey (if you haven't already done so). This is the last survey this year, but we really REALLY need you to take part. The more numbers we have, the stronger our voice. If we can say we had 1000 responses, that gives us the
PBCRobert
Administrator
in
PBC Foundation
7 years ago
Update: Labs
Numbers are moving like they should. Im pleased with this. The Ocaliva & Urso seem to be working well together. Praying they continue to move the numbers. Thank you everyone for all of your support & prayers. Back in two weeks for the same labs. Stay strong❣️
Numbers are moving like they should. Im pleased with this. The Ocaliva & Urso seem to be working well together. Praying they continue to move the numbers. Thank you everyone for all of your support & prayers. Back in two weeks for the same labs. Stay strong❣️
Shulsey
in
PBC Foundation
7 years ago
Swallowing problems
I have been on urso ten months Had one episode of problem swallowing for 2 weeks Within past week is returning and swallowing painful Has anyone experienced this?
I have been on urso ten months Had one episode of problem swallowing for 2 weeks Within past week is returning and swallowing painful Has anyone experienced this?
Ljonesfnp
in
PBC Foundation
7 years ago
Shivering at night
Hi just been diagnosed over phone with possible pbc (apparently somebody made mistake with blood test) when I asked what is that dr told me to google it - he has prescribed Urso - only been taking a few days however the last 3 nights I have been shivering and shaking yet I am burning up on the outside
Hi just been diagnosed over phone with possible pbc (apparently somebody made mistake with blood test) when I asked what is that dr told me to google it - he has prescribed Urso - only been taking a few days however the last 3 nights I have been shivering and shaking yet I am burning up on the outside
Cazzie56
in
PBC Foundation
7 years ago
Primary biliary cholangitis
Hi I've had a lot of pain upper right for years. Especially since having my children. I've been diagnosed with spinster of oddi dysfunction but told I most problems have primary biliary cholangitis and undergoing tests. I've been on the urso acid with no change and wondered if anyone could provide me
Hi I've had a lot of pain upper right for years. Especially since having my children. I've been diagnosed with spinster of oddi dysfunction but told I most problems have primary biliary cholangitis and undergoing tests. I've been on the urso acid with no change and wondered if anyone could provide me
HCantThinkOfA
in
British Liver Trust
7 years ago
AIH/PBC pregnancy
Hello I have AIH/PBC. I wanna concieve. Im good, felling great, have 1 bud per day, aza and urso. Feeling good, have no symptoms.Are there any problems concieve with both AIH/PBC OR WITH PREGNANCY AS SUCH? Can there be more problems to concieve or with pregnancy with bot, Aih/PBC (overlapse) then with
Hello I have AIH/PBC. I wanna concieve. Im good, felling great, have 1 bud per day, aza and urso. Feeling good, have no symptoms.Are there any problems concieve with both AIH/PBC OR WITH PREGNANCY AS SUCH? Can there be more problems to concieve or with pregnancy with bot, Aih/PBC (overlapse) then with
anny84
in
British Liver Trust
7 years ago
New member here
Hello, my name is Eric and just discovered this site. I am 49, and was diagnosed with PBC in 2013 after a routine blood panel showed elevated AMA. It was never high, so Dr thinks they caught me in very early stages. Only taking Ursodiol since then, but I have not taken it the past 3 months or so; last
Hello, my name is Eric and just discovered this site. I am 49, and was diagnosed with PBC in 2013 after a routine blood panel showed elevated AMA. It was never high, so Dr thinks they caught me in very early stages. Only taking Ursodiol since then, but I have not taken it the past 3 months or so; last
eahicks68
in
PBC Foundation
7 years ago
tudca
Hi i read your post on Tudca, and i am wondering if you have tried it yet. If so how is it going? I also have researched Tudca and purchased it but my wife has not yet begun taking it. She can not take urso because of side effects and has started oca but within a week the side effects are back. I would
Hi i read your post on Tudca, and i am wondering if you have tried it yet. If so how is it going? I also have researched Tudca and purchased it but my wife has not yet begun taking it. She can not take urso because of side effects and has started oca but within a week the side effects are back. I would
bostonjim
in
PBC Foundation
7 years ago
Delayed reactions to urso
Hi, everyone, I've been taking urso for about five months. I felt fine up to about a month/six weeks ago but now I'm experiencing a horrible taste that just won't go away and some nausea. Has anyone else experienced this? I don't know what to do about it. The drug seems to have brought down my ALP
Hi, everyone, I've been taking urso for about five months. I felt fine up to about a month/six weeks ago but now I'm experiencing a horrible taste that just won't go away and some nausea. Has anyone else experienced this? I don't know what to do about it. The drug seems to have brought down my ALP
tinypixie
in
PBC Foundation
7 years ago
Newbie here, just making introductions
Hey y'all, I'm CoCo. I'm brand spanking new. I know this is mostly for England and the UK, but I'm from the states, in Kentucky. I have been having issues with my liver levels for years. The first gastro doc told me that there was nothing wrong with me even though my AST and ALT were around 145-160
Hey y'all, I'm CoCo. I'm brand spanking new. I know this is mostly for England and the UK, but I'm from the states, in Kentucky. I have been having issues with my liver levels for years. The first gastro doc told me that there was nothing wrong with me even though my AST and ALT were around 145-160
CoCoMcD
in
PBC Foundation
7 years ago
Diarrhea after CT-Scan
Hi, on Monday I had a CT-Scan with a contrast drinking solution (iodine) and also contrast in veins. I had watery diarrhea on Monday and continue less and less , but today Thursday and still don`t have normal stools and some small amount leaks to my panties. I `ve been on URSO since April 21st ( 2X 500
Hi, on Monday I had a CT-Scan with a contrast drinking solution (iodine) and also contrast in veins. I had watery diarrhea on Monday and continue less and less , but today Thursday and still don`t have normal stools and some small amount leaks to my panties. I `ve been on URSO since April 21st ( 2X 500
ritarobainapbc
in
PBC Foundation
7 years ago
Test result
Hi , Yesterday to the hospital to see de doctor, to get back my test results of the biopsie. Ok just a little fibrose and now i have to take urso 500 mg And a bone scan to see for osteoporosis. Any way Im happy with the results so fa en hope that the urso will do his job. Greet Marianne
Hi , Yesterday to the hospital to see de doctor, to get back my test results of the biopsie. Ok just a little fibrose and now i have to take urso 500 mg And a bone scan to see for osteoporosis. Any way Im happy with the results so fa en hope that the urso will do his job. Greet Marianne
marianne349
in
PBC Foundation
7 years ago
Leg problems and Pbc
Hi I was diagnosed with Pbc and taking the urso. The problem I'm having is with my knees mainly. I get knee (patella )tendonopathy every two-3months and now it varies either left or right. I take very strong pain killers which don't help the liver but the pain is terrible without. Has anyone else with
Hi I was diagnosed with Pbc and taking the urso. The problem I'm having is with my knees mainly. I get knee (patella )tendonopathy every two-3months and now it varies either left or right. I take very strong pain killers which don't help the liver but the pain is terrible without. Has anyone else with
Twinkle26
in
PBC Foundation
7 years ago
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