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Newly diagnosed with PBC and starting Urso today
Hi all I am 33 and have just been diagnosed with PBC. My routine bloods showed elevated LFTs and I tested positive for AMAs. My GP referred me to a specialist who wrote to me to confirm it was PBC and said I needed to liaise with my doc to start on Urso. I spoke to the GP on Friday who, unhelpfully
Hi all I am 33 and have just been diagnosed with PBC. My routine bloods showed elevated LFTs and I tested positive for AMAs. My GP referred me to a specialist who wrote to me to confirm it was PBC and said I needed to liaise with my doc to start on Urso. I spoke to the GP on Friday who, unhelpfully
Aishah88
in
PBC Foundation
3 years ago
Newly diagnosed with PBC and starting Urso today
Hi all I am 33 and have just been diagnosed with PBC. My routine bloods showed elevated LFTs and I tested positive for AMAs. My GP referred me to a specialist who wrote to me to confirm it was PBC and said I needed to liaise with my doc to start on Urso. I spoke to the GP on Friday who, unhelpfully,
Hi all I am 33 and have just been diagnosed with PBC. My routine bloods showed elevated LFTs and I tested positive for AMAs. My GP referred me to a specialist who wrote to me to confirm it was PBC and said I needed to liaise with my doc to start on Urso. I spoke to the GP on Friday who, unhelpfully,
Aishah88
in
British Liver Trust
3 years ago
Life expectancy and impact of irregularities in taking Urso dose
I was diagnosed with PBC at the age 34. I’m 40 now. My enzymes were in 1100~1200 range when I was diagnosed but they are back down to almost normal 30~60 range. I’m really bad at taking my Urso at regular intervals and expected dosage. How bad is it for my liver and how does it affect my life expectancy
I was diagnosed with PBC at the age 34. I’m 40 now. My enzymes were in 1100~1200 range when I was diagnosed but they are back down to almost normal 30~60 range. I’m really bad at taking my Urso at regular intervals and expected dosage. How bad is it for my liver and how does it affect my life expectancy
pbclimbu
in
PBCers Organization
3 years ago
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New to PBC
Hello I have just recently been diagnosed with PBC, I have just turn 38 today. I was diagnosed last Friday, iam so worried about this. My mum passed away at age 54 from liver failure, I have just started urso on Monday 250mgs twice a day is this the standard dose as it seems quite high??
Hello I have just recently been diagnosed with PBC, I have just turn 38 today. I was diagnosed last Friday, iam so worried about this. My mum passed away at age 54 from liver failure, I have just started urso on Monday 250mgs twice a day is this the standard dose as it seems quite high??
Leeanne83
in
PBC Foundation
3 years ago
Herbal Supplements
Does anyone with PBC take herbal supplements along with their prescribed medications to help lower liver enzymes? If so what kind, and have they actually helped. I was diagnosed stage 0-1 in 2009, but could not tolerate URSO, so I've not been taking any medications for the past 12 years. I had a fibroscan
Does anyone with PBC take herbal supplements along with their prescribed medications to help lower liver enzymes? If so what kind, and have they actually helped. I was diagnosed stage 0-1 in 2009, but could not tolerate URSO, so I've not been taking any medications for the past 12 years. I had a fibroscan
Legs8323
in
PBCers Organization
3 years ago
Arthralgia and myalgia
Hi. I was in hosp about 1 month ago with bone, joint and muscle pain and extreme weakness. My crp was 67, platelets 450, eosinophil raised . Had bloods test for ANA and ANCA. Both neg. A month on and my LFTs are more raised than ever and my crp 20 . My bone, joint, muscle pain persists and weakness
Hi. I was in hosp about 1 month ago with bone, joint and muscle pain and extreme weakness. My crp was 67, platelets 450, eosinophil raised . Had bloods test for ANA and ANCA. Both neg. A month on and my LFTs are more raised than ever and my crp 20 . My bone, joint, muscle pain persists and weakness
Nellies47
in
PBC Foundation
3 years ago
Low Red and White blood cel counts.
Has anyone had low red and white blood cell counts with this decease? I was diagnosed stage 0-1 in 2009, but URSO has been unresponsive.
Has anyone had low red and white blood cell counts with this decease? I was diagnosed stage 0-1 in 2009, but URSO has been unresponsive.
Legs8323
in
PBCers Organization
3 years ago
weigth gain
Hello and thank you for accepting me in the group, I have a question, what are your side effects from urso?? gain weight, back pain, hair loss , I don’t know if I am more scare of symptoms or side effects.
Hello and thank you for accepting me in the group, I have a question, what are your side effects from urso?? gain weight, back pain, hair loss , I don’t know if I am more scare of symptoms or side effects.
casegaro
in
PBC Foundation
3 years ago
Nervous to take urso
Hi everyone, new here and recently diagnosed with PBC. My dr says I’ve probably had it since 2019 but that there’s no sign in my bloodwork of actual damage yet. I was prescribed 1000mg of urso and I’m also seeing a naturopathic dr who gave me some supplements, including milk thistle. Is urso generally
Hi everyone, new here and recently diagnosed with PBC. My dr says I’ve probably had it since 2019 but that there’s no sign in my bloodwork of actual damage yet. I was prescribed 1000mg of urso and I’m also seeing a naturopathic dr who gave me some supplements, including milk thistle. Is urso generally
ginabean
in
PBC Foundation
3 years ago
Unknown liver disease - No symptoms
Hello! I’ve been on this trip for 4-5 years. I’m a young man (31), “normal” weight and I didn’t start drinking until I was 24, and not abusing (you know, just some drinks on weekends with my friends). It all started with a very low elevation of liver enzymes at a regular doc visit. He said that they
Hello! I’ve been on this trip for 4-5 years. I’m a young man (31), “normal” weight and I didn’t start drinking until I was 24, and not abusing (you know, just some drinks on weekends with my friends). It all started with a very low elevation of liver enzymes at a regular doc visit. He said that they
Kramkv
in
British Liver Trust
3 years ago
Normal ALP at time of Diagnosis
Hello. I have had PBC for just over 3 years. I have always had a very normal ALP. I've read that one of the hallmarks of PBC is an elevated ALP. I have positive AMA and other elevated liver enzymes, now normal with urso. Can you explain why my ALP is normal? What does that indicate?
Hello. I have had PBC for just over 3 years. I have always had a very normal ALP. I've read that one of the hallmarks of PBC is an elevated ALP. I have positive AMA and other elevated liver enzymes, now normal with urso. Can you explain why my ALP is normal? What does that indicate?
kerrypark
in
PBC Foundation
3 years ago
Milk Thistle and Boldo
I'm a 64 year old, diagnosed in 2019 and started taking Urso 1250mg/day. Enzyme levels dropped some but not enough. Started on Ocaliva Feb. 2021, Wanted to know if Milk Thistle and Boldo combination is ok to take.
I'm a 64 year old, diagnosed in 2019 and started taking Urso 1250mg/day. Enzyme levels dropped some but not enough. Started on Ocaliva Feb. 2021, Wanted to know if Milk Thistle and Boldo combination is ok to take.
Germinal
in
PBC Foundation
3 years ago
PBC and stool color
Hello friends, personal type question. Pretty new to PBC, wondering if anyone has stool color changes. Yellow, clayish color, to a dark dark color. I eat pretty healthy, nothing processed too much. fruit, nuts, fish, chicken breast and veggies. No stomach or liver pain, just odd color stools. I take
Hello friends, personal type question. Pretty new to PBC, wondering if anyone has stool color changes. Yellow, clayish color, to a dark dark color. I eat pretty healthy, nothing processed too much. fruit, nuts, fish, chicken breast and veggies. No stomach or liver pain, just odd color stools. I take
TanGram
in
PBC Foundation
3 years ago
18 and newly diagnosed with PBC
In the middle of last year I was diagnosed, but with everything going on, I feel as though I don't know much about the disease. I've been put on URSO and it seems to be working so far, but I was wondering what reliable sources I can look at to feel more comfortable with this diagnosis. I have muscle
In the middle of last year I was diagnosed, but with everything going on, I feel as though I don't know much about the disease. I've been put on URSO and it seems to be working so far, but I was wondering what reliable sources I can look at to feel more comfortable with this diagnosis. I have muscle
18yrsmuse
in
PBC Foundation
3 years ago
Gymnast1234
I have been diagnosed with PBC and have been on Urso twice daily (500mg per dose) for over 2 months. Side effects nausea and having diarrhea at minimum 6x a day. Looking for types of food that can help with these problems. There are so many “to keep away from”, but not many to help. Rice, applesauce
I have been diagnosed with PBC and have been on Urso twice daily (500mg per dose) for over 2 months. Side effects nausea and having diarrhea at minimum 6x a day. Looking for types of food that can help with these problems. There are so many “to keep away from”, but not many to help. Rice, applesauce
Gymnast1234
in
PBCers Organization
3 years ago
Altermative to a liver biopsy???
I have not formally been diagnosed with PBC but am responding well to urso. I had a liver biopsy which went wrong and resulted in a perforrated gallbladder and I really dont want another one. Does a fibroscan do the same job as a biopsy?
I have not formally been diagnosed with PBC but am responding well to urso. I had a liver biopsy which went wrong and resulted in a perforrated gallbladder and I really dont want another one. Does a fibroscan do the same job as a biopsy?
ElviralovesFashion
in
British Liver Trust
3 years ago
PRE-Habilitation Questions for Transplanted and Transplant Listed People
Hello! Just had a second liver biopsy last week and pathology staged it as F3 PBC/AIH while the liver transplant committee reviewed and agreed I am Stage 4 with cirrhosis. (I've already developed stomach bleeds, AVMs, GR1 Varices and have a portal hypertension measurement of 11. I am starting treatment
Hello! Just had a second liver biopsy last week and pathology staged it as F3 PBC/AIH while the liver transplant committee reviewed and agreed I am Stage 4 with cirrhosis. (I've already developed stomach bleeds, AVMs, GR1 Varices and have a portal hypertension measurement of 11. I am starting treatment
JennerLayne
in
British Liver Trust
3 years ago
Anyone's iron level low?
I had a blood test last week and apparently my iron is low. I have a doctors appointment next week . I'm currently on Urso twice a day for PBC
I had a blood test last week and apparently my iron is low. I have a doctors appointment next week . I'm currently on Urso twice a day for PBC
ElviralovesFashion
in
British Liver Trust
3 years ago
ALT and AST?
I noticed my liver hurting more than usual in the past month, my abdomen more bloated, and generally feeling not well. I am always severely fatigued and when diagnosed in January 2017, I was already in Stage 2-3 fibrosis, shown on an MRE. My liver numbers were never particularly elevated, the worst my
I noticed my liver hurting more than usual in the past month, my abdomen more bloated, and generally feeling not well. I am always severely fatigued and when diagnosed in January 2017, I was already in Stage 2-3 fibrosis, shown on an MRE. My liver numbers were never particularly elevated, the worst my
claygi
in
PBC Foundation
3 years ago
Hair loss and PBC
Has anyone suffered hair loss as a result ot PBC or Urso?
Has anyone suffered hair loss as a result ot PBC or Urso?
MsLibra
in
PBC Foundation
3 years ago
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