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PBC and Life Expectancy
I read with interest the previous thread with a similar title and so I decided to start a separate thread. I have much to say on this topic that might be helpful to patients, new and old, and for it to be lost in the body of another thread might limit its reach. Where to begin... I have lived knowingly
I read with interest the previous thread with a similar title and so I decided to start a separate thread. I have much to say on this topic that might be helpful to patients, new and old, and for it to be lost in the body of another thread might limit its reach. Where to begin... I have lived knowingly
PBCRobert
Administrator
in
PBC Foundation
6 years ago
Tendinitis
Hi everyone... I was diagnosed with PBC In December last year , am on urso and all seems fine but started having really bad leg pain just above my ankle, saw a stand in gp who said it was tendinitis and gave me ibroprofen,,which I haven’t taken and told to rest it , but weeks on and it’s no better and
Hi everyone... I was diagnosed with PBC In December last year , am on urso and all seems fine but started having really bad leg pain just above my ankle, saw a stand in gp who said it was tendinitis and gave me ibroprofen,,which I haven’t taken and told to rest it , but weeks on and it’s no better and
Jnuttall
in
PBC Foundation
6 years ago
Why do some consultants seem so patronising
I was sent to see a gastro consultant he said did I have any questions but then proceeded to talk to my husband When I last saw him he admitted that he did not know much about Pbc and this is the man that issued the prescription for urso!!!
I was sent to see a gastro consultant he said did I have any questions but then proceeded to talk to my husband When I last saw him he admitted that he did not know much about Pbc and this is the man that issued the prescription for urso!!!
George1234
in
British Liver Trust
6 years ago
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Ocaliva is working for me 🙌🏻🙌🏻
Diagnosed around 5 years ago with PBC and was on 1500mg urso and nothing doing. After biopsy February I was told now stage 1 child’s cirrotic 😭 but NO symptoms like ZERO. 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
Diagnosed around 5 years ago with PBC and was on 1500mg urso and nothing doing. After biopsy February I was told now stage 1 child’s cirrotic 😭 but NO symptoms like ZERO. 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
Alison2306
in
PBC Foundation
6 years ago
PBC, tired but hopeful
I was diagnosed Jan 2017. Though my symptoms go back to my late teens early 20’s. I had an emergency gallbladder removal and spent 5 days in the hospital at 25 (2002) for a mystery liver infection. Gallbladder was just swollen no stones. The blessing came because the several weeks of antibiotics I
I was diagnosed Jan 2017. Though my symptoms go back to my late teens early 20’s. I had an emergency gallbladder removal and spent 5 days in the hospital at 25 (2002) for a mystery liver infection. Gallbladder was just swollen no stones. The blessing came because the several weeks of antibiotics I
kalikrissy
in
PBC Foundation
6 years ago
Pbc and joint pain
My last gastroenterology my liver function was normal due to urso I possibly have sjogren's, but not diagnosed as I won't have lip biopsy Any way, yesterday I wake up with pain in the hip joint, walking is OK but stairs cause alot of pain I ve been told pcb causes joint pain but not really explained
My last gastroenterology my liver function was normal due to urso I possibly have sjogren's, but not diagnosed as I won't have lip biopsy Any way, yesterday I wake up with pain in the hip joint, walking is OK but stairs cause alot of pain I ve been told pcb causes joint pain but not really explained
Pinkcrush
in
PBC Foundation
6 years ago
Urso
Why would you not take Urso unless you are not a responder? What were the side effects that made you switch meds?
Why would you not take Urso unless you are not a responder? What were the side effects that made you switch meds?
Ellyne
in
PBC Foundation
6 years ago
Positive AMA went down to normal
Hello everyone, So my doctor diagnosed me with pbc but never put me on urso because my bilirubin was not elevated. She decided to get my labs checked monthly. My AMA was still positive for the first two months, but now it is normal. Whats does this mean? Do I not have pbc?
Hello everyone, So my doctor diagnosed me with pbc but never put me on urso because my bilirubin was not elevated. She decided to get my labs checked monthly. My AMA was still positive for the first two months, but now it is normal. Whats does this mean? Do I not have pbc?
selinihun
in
PBC Foundation
6 years ago
Alkphos
Hi! Thanks for reading this! I’m on Urso and last November my alkphos was normal - like really normal- then in April I had a med check (cholesterol check) with my family dr and it had gone to 135 and I just had it done for my GI dr for PBC and it’s 157!!! I’m panicking!!!! All other blood work is perfect
Hi! Thanks for reading this! I’m on Urso and last November my alkphos was normal - like really normal- then in April I had a med check (cholesterol check) with my family dr and it had gone to 135 and I just had it done for my GI dr for PBC and it’s 157!!! I’m panicking!!!! All other blood work is perfect
Sam1121
in
PBC Foundation
6 years ago
Update: Partial responder to URSO - back to splitting the dose
Hi All - I posted a couple of months ago about being a partial responders to URSO. Diagnosed 3 years ago when LFTs were sky high. After first four months took daily dose of URSO in one go as recommended in patient info leaflet that comes with tablets. While LFTs have been slowly coming down in the last
Hi All - I posted a couple of months ago about being a partial responders to URSO. Diagnosed 3 years ago when LFTs were sky high. After first four months took daily dose of URSO in one go as recommended in patient info leaflet that comes with tablets. While LFTs have been slowly coming down in the last
LisaC22
in
PBC Foundation
6 years ago
I need a reminder...
Hi PBC family, I Hope everyone is doing as well as can be expected. And for those of you experiencing the worst of this stupid disease, many prayers go out for you everyday ❤. I know several of you have experienced upper right quadrant pain or URQP. Some have described it as a dull ache that may radiate
Hi PBC family, I Hope everyone is doing as well as can be expected. And for those of you experiencing the worst of this stupid disease, many prayers go out for you everyday ❤. I know several of you have experienced upper right quadrant pain or URQP. Some have described it as a dull ache that may radiate
Ktltel
in
PBC Foundation
6 years ago
Gym or Support Buddies needed - London Essex
Hi All, So this year has been hard been told that the urso doesn't work for me and then they put me on steroids and they have done no good either so they have taken me off them. Finally, been told that I don't qualify for the new trial meds... So I am literally at a loss! I am turning 30 this year
Hi All, So this year has been hard been told that the urso doesn't work for me and then they put me on steroids and they have done no good either so they have taken me off them. Finally, been told that I don't qualify for the new trial meds... So I am literally at a loss! I am turning 30 this year
xXxAndzxXx
in
PBC Foundation
6 years ago
Sad today ama goes up b12 gluten?
Hi Current blood work today showed 147 am a m2 & borderline high Cholesterol . My last reading had gone down to 90. On watch no ur so all other labs normal . I did have major Constipation during blood draw . I also felt low on iron at the time and had a uti. I'm disappointed as I had improved
Hi Current blood work today showed 147 am a m2 & borderline high Cholesterol . My last reading had gone down to 90. On watch no ur so all other labs normal . I did have major Constipation during blood draw . I also felt low on iron at the time and had a uti. I'm disappointed as I had improved
Sdone
in
PBC Foundation
6 years ago
Texas PBC conference and support groups
Hello everybody, Sorry I took so long to get back to you who have been so kind and encouraging. The conference in Texas was so helpful to me. 2 plus very full days of lectures, information, encouragement and fun. It was so worth the trip. My biopsy did come back positive for PBC. and I have started
Hello everybody, Sorry I took so long to get back to you who have been so kind and encouraging. The conference in Texas was so helpful to me. 2 plus very full days of lectures, information, encouragement and fun. It was so worth the trip. My biopsy did come back positive for PBC. and I have started
FranSP
in
PBC Foundation
6 years ago
Can you highlight your hair if diagnosed with aih/pbc overlap?
I am wanting to have my hair highlighted for my forthcoming holiday. I take budesonide 6mg and 50mg as a and 1000ml urso a day. Is it safe?
I am wanting to have my hair highlighted for my forthcoming holiday. I take budesonide 6mg and 50mg as a and 1000ml urso a day. Is it safe?
Briggo
in
PBC Foundation
6 years ago
Ultrasound and Fibroscan results
Can anyone help explain what the following means please: Ultrasound - liver parenchyma is finely heterogenous throughout (is that good or bad?) Fibroscan - LSM 7.9kPa, IQR 0.9kPa, CAP 180dB/m I've had a look online but can't get a simple answer and I know there's lots of people here who can give me some
Can anyone help explain what the following means please: Ultrasound - liver parenchyma is finely heterogenous throughout (is that good or bad?) Fibroscan - LSM 7.9kPa, IQR 0.9kPa, CAP 180dB/m I've had a look online but can't get a simple answer and I know there's lots of people here who can give me some
AdeleMalcolm
in
PBC Foundation
6 years ago
Fasting and PBC
Hi everyone, I’m new to this forum, and I love all the helpful information I read here. I wish you all well. I have a lot of questions, but I’ll start with just one of them for now :). Is it bad to fast when you have PBC? Does the liver need constant hydration and many meals a day? Or is it Okay to
Hi everyone, I’m new to this forum, and I love all the helpful information I read here. I wish you all well. I have a lot of questions, but I’ll start with just one of them for now :). Is it bad to fast when you have PBC? Does the liver need constant hydration and many meals a day? Or is it Okay to
ZEMR
in
PBC Foundation
6 years ago
PBC, hair loss and itching
Hi all, my consultant is currently investigating me for PBC after 3 years of high LFT’s, 2 biopsies and no real answers! So I have started taking urso (500mg twice daily). But my itching has got significantly worse since starting it - is this normal?? I thought the medication would help ease the itching
Hi all, my consultant is currently investigating me for PBC after 3 years of high LFT’s, 2 biopsies and no real answers! So I have started taking urso (500mg twice daily). But my itching has got significantly worse since starting it - is this normal?? I thought the medication would help ease the itching
kateadie
in
British Liver Trust
6 years ago
Nausea
Had pbc for a year now with normal labs since urso bit lately the nausea is getting so much worse and the itching is coming back..... does this happen even if your labs are normal?
Had pbc for a year now with normal labs since urso bit lately the nausea is getting so much worse and the itching is coming back..... does this happen even if your labs are normal?
Pamela4475
in
PBC Foundation
6 years ago
New diagnosis; itching not improving
Hello, I started having severe nighttime itching in Oct 2016. Spent a year trying steroids, allergy meds and getting allergy tests which were negative. Liver biopsy last month confirmed PBC, stage 1 no fibrosis. My alk phos, ggt, lfts were mildly elevated. As is my cholesterol and iron level. My M2
Hello, I started having severe nighttime itching in Oct 2016. Spent a year trying steroids, allergy meds and getting allergy tests which were negative. Liver biopsy last month confirmed PBC, stage 1 no fibrosis. My alk phos, ggt, lfts were mildly elevated. As is my cholesterol and iron level. My M2
55mimi
in
PBC Foundation
6 years ago
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