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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
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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
PBC itch
Hi I have PBC for past 4 years, non responder to urso but still take with bezafibrate. My Alk phosphate are always abnormal at around 400-500 and I’m positive AMA I have unbearable itch but as well as that have now been diagnosed with rare skin condition called Darier disease I was prescribed high dose
Hi I have PBC for past 4 years, non responder to urso but still take with bezafibrate. My Alk phosphate are always abnormal at around 400-500 and I’m positive AMA I have unbearable itch but as well as that have now been diagnosed with rare skin condition called Darier disease I was prescribed high dose
Rozm2004
in
PBC Foundation
3 years ago
Newbie - Hello
Hello everyone. I hope you are all well. I have recently been diagnosed with PBC ( Jan 21 ) and have joined to hopefully get advice and support. I had to give up my full time work as a healthcare practitioner in the NHS due to my ill health. Does anyone else suffer with extreme fatigue and aches and
Hello everyone. I hope you are all well. I have recently been diagnosed with PBC ( Jan 21 ) and have joined to hopefully get advice and support. I had to give up my full time work as a healthcare practitioner in the NHS due to my ill health. Does anyone else suffer with extreme fatigue and aches and
Fredbare13
in
PBCers Organization
3 years ago
PBC and Autoimmune Hepatitis
Diagnosed with PBC 2012 last biopsy 3yrs ago stage 2. Labs not improving over the years dispite using Urso and Ocaliva combined. Now trying steroids and bone marrow suppressants incase I have autoimmune hepatitis. My Alt and Ast stabalized but still have elevated alk phos. Any body out there with
Diagnosed with PBC 2012 last biopsy 3yrs ago stage 2. Labs not improving over the years dispite using Urso and Ocaliva combined. Now trying steroids and bone marrow suppressants incase I have autoimmune hepatitis. My Alt and Ast stabalized but still have elevated alk phos. Any body out there with
Q8Cooper
in
PBC Foundation
3 years ago
Is my PBc causing all this or is it the medication ?
hi all, since being diagnosed with the pbc and taking the Urso tablets, my hair is falling out so badly, i have pretty longish hair and is now so thin i dread washing it and is upsetting me i also have psoriasis so i use special shampoo, is it the pbc or medication causing this and will it eventually
hi all, since being diagnosed with the pbc and taking the Urso tablets, my hair is falling out so badly, i have pretty longish hair and is now so thin i dread washing it and is upsetting me i also have psoriasis so i use special shampoo, is it the pbc or medication causing this and will it eventually
Jennied66
in
PBC Foundation
3 years ago
PBC itch and bruising
PBC itch and bruising Itching is the only symptom I get from PBC and sometimes the itching is so intense. At the moment my legs are covered in bruises, some of which are quite sore. Does anyone else find that this happens to them? I finally have an appointment with the doctor, I haven’t been since since
PBC itch and bruising Itching is the only symptom I get from PBC and sometimes the itching is so intense. At the moment my legs are covered in bruises, some of which are quite sore. Does anyone else find that this happens to them? I finally have an appointment with the doctor, I haven’t been since since
Cookie712
in
PBC Foundation
3 years ago
I’ve just started taking Urso
Hi there, I’ve very recently just been diagnosed with PBC, and I finally got my prescription for Urso. So I’ve been on it for 2 days now and to be honest I feel really quite rough today. My tummy is really sore and I’ve felt like I have a real bad dose of hay fever and just feel groggy. Is this quite
Hi there, I’ve very recently just been diagnosed with PBC, and I finally got my prescription for Urso. So I’ve been on it for 2 days now and to be honest I feel really quite rough today. My tummy is really sore and I’ve felt like I have a real bad dose of hay fever and just feel groggy. Is this quite
Darcy2608
in
PBC Foundation
3 years ago
Medication
I have PBC which has progressed to Cirrhosis. I also have Fibromyalgia along with RA Osteoporosis among lots of other Auto Imm diagnosis. Among my Meds pI take Urso and Sulfazalzaline. My pharmacy is struggling to get these for me . I am having to phone other pharmacies to see if they have them as these
I have PBC which has progressed to Cirrhosis. I also have Fibromyalgia along with RA Osteoporosis among lots of other Auto Imm diagnosis. Among my Meds pI take Urso and Sulfazalzaline. My pharmacy is struggling to get these for me . I am having to phone other pharmacies to see if they have them as these
lorac
in
PBC Foundation
3 years ago
Ache on right side?
Hi, I was diagnosed with Pbc 11 months ago and I’m on Urso,but keep getting an ache and bloated feeling on my right side, about level with belly button. Is this a known effect of Urso?
Hi, I was diagnosed with Pbc 11 months ago and I’m on Urso,but keep getting an ache and bloated feeling on my right side, about level with belly button. Is this a known effect of Urso?
2009gardener
in
PBC Foundation
3 years ago
ALP
Hi, I’ve just had my latest blood results back and my ALP has come back as 164, this is up 20 on the last result. I was diagnosed with PBC in 2016 and have been on Urso since. Does anyone know if 164 is really high. My Dr has said no action needed? Thank you, Jules
Hi, I’ve just had my latest blood results back and my ALP has come back as 164, this is up 20 on the last result. I was diagnosed with PBC in 2016 and have been on Urso since. Does anyone know if 164 is really high. My Dr has said no action needed? Thank you, Jules
Jules-S
in
PBC Foundation
3 years ago
PBC & HRT
PBC & HRT I was diagnosed with PBC in 2019 and have recently found out I’m going through early menopause (I’m 29). Has anyone else gone through this and are you able to still take HRT? I am taking urso and as I couldn’t use hormonal contraception, does anyone know if I can still take hormone replacements
PBC & HRT I was diagnosed with PBC in 2019 and have recently found out I’m going through early menopause (I’m 29). Has anyone else gone through this and are you able to still take HRT? I am taking urso and as I couldn’t use hormonal contraception, does anyone know if I can still take hormone replacements
Cookie712
in
PBC Foundation
3 years ago
Cost of Urso
Hello American PBCers! I went to the pharmacy to get my first prescription of Urso and the copay was $600.00 for a 3 month supply!! Has anyone found a less expensive way to get this needed medication? Don't get me started on the US health care system's flaws...
Hello American PBCers! I went to the pharmacy to get my first prescription of Urso and the copay was $600.00 for a 3 month supply!! Has anyone found a less expensive way to get this needed medication? Don't get me started on the US health care system's flaws...
sjt58
in
PBC Foundation
3 years ago
Does hair loss slow down once you adjust to Urso?
I started Urso a two months ago and my hair is falling out. I know others have had problems with hair loss too. Does the hair loss slow down once your body gets used to the medication? How bad did the hair loss get? I don't mind thinner hair but is there a chance that I will lose most of my hair?
I started Urso a two months ago and my hair is falling out. I know others have had problems with hair loss too. Does the hair loss slow down once your body gets used to the medication? How bad did the hair loss get? I don't mind thinner hair but is there a chance that I will lose most of my hair?
sjt58
in
PBC Foundation
3 years ago
URSO and fluctuating results
Hi... my wife was diagnosed with PBC last year and started on URSO 9 months ago. Her first results were excellent, but her recent blood test showed a small elevation in her ALK/ALT. IS it normal for your readings to fluctuate on URSO? Are there foods or medications that interact with URSO that we should
Hi... my wife was diagnosed with PBC last year and started on URSO 9 months ago. Her first results were excellent, but her recent blood test showed a small elevation in her ALK/ALT. IS it normal for your readings to fluctuate on URSO? Are there foods or medications that interact with URSO that we should
dlagasse
in
PBC Foundation
3 years ago
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