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Uva Ursi
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Experiences of Ocaliva
Hi everyone, What’s your experience of being put on Ocaliva? My Gastro is considering putting me on Ocaliva as the Urso doesn’t seem to be working properly. I’ve googled the side effects and it seems to give conflicting advice. One site says reduces itching as fatigue, the other says side effects include
Hi everyone, What’s your experience of being put on Ocaliva? My Gastro is considering putting me on Ocaliva as the Urso doesn’t seem to be working properly. I’ve googled the side effects and it seems to give conflicting advice. One site says reduces itching as fatigue, the other says side effects include
Hils67
in
PBC Foundation
6 years ago
Urso not working?
Hi all, I'm newly diagnosed with PBC just a little over 2 months ago. I've had elevated liver enzymes (alk phos) for several months. I started Urso November 7, and just had first labs to check. The alk. phos. level went up by over 25 points!! Has anyone else had this happen? Thanks, Lilygrower
Hi all, I'm newly diagnosed with PBC just a little over 2 months ago. I've had elevated liver enzymes (alk phos) for several months. I started Urso November 7, and just had first labs to check. The alk. phos. level went up by over 25 points!! Has anyone else had this happen? Thanks, Lilygrower
lilygrower
in
PBC Foundation
6 years ago
Hypothyroidism
Good morning all. I’m doing a little research here. How many of you with the diagnosis of PBC also have low thyroid? My fatigue is off the wall right now, and I also have some of the other symptoms of hypothyroid ; dry skin, brittle nails, and losing clumps of hair,as well as, the debilitating fatigue
Good morning all. I’m doing a little research here. How many of you with the diagnosis of PBC also have low thyroid? My fatigue is off the wall right now, and I also have some of the other symptoms of hypothyroid ; dry skin, brittle nails, and losing clumps of hair,as well as, the debilitating fatigue
Jeanb47
in
PBC Foundation
6 years ago
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Specialist referral
Hi everyone, This is a question for UK members. Do you get treated by a gastro dr or liver specialist? I’m currently under a gastro consultant at my local hospital in West Wales, but I’m not receiving follow up appointments and last time I spoke to the medical secretary she said the dr was ‘away’ and
Hi everyone, This is a question for UK members. Do you get treated by a gastro dr or liver specialist? I’m currently under a gastro consultant at my local hospital in West Wales, but I’m not receiving follow up appointments and last time I spoke to the medical secretary she said the dr was ‘away’ and
Hils67
in
PBC Foundation
6 years ago
Cholesterol rising
Hi all. Was diagnosed with Pbc last year. Non-symptomatic, discovered during routine bloodwork for physical. Liver enzymes slightly elevated. First pathologist report of liver biopsy was chronic hepatitis. Specialist pathologist report says pbc. Taking urso 300 mg 2x a day. My alt and ast are now within
Hi all. Was diagnosed with Pbc last year. Non-symptomatic, discovered during routine bloodwork for physical. Liver enzymes slightly elevated. First pathologist report of liver biopsy was chronic hepatitis. Specialist pathologist report says pbc. Taking urso 300 mg 2x a day. My alt and ast are now within
jplitt
in
PBC Foundation
6 years ago
Newly Diagnosed PBC & SS
Hi all, I am so glad that I found this community :) I was dx with Sjogrens in November and put on 200mg of Hydroxy twice a day. I was dx with PCB on Christmas Eve and put on Urso 250mg three times a day. Prediagnosed I was suffering so bad with tiredness, I mean you could count backwards from 5
Hi all, I am so glad that I found this community :) I was dx with Sjogrens in November and put on 200mg of Hydroxy twice a day. I was dx with PCB on Christmas Eve and put on Urso 250mg three times a day. Prediagnosed I was suffering so bad with tiredness, I mean you could count backwards from 5
Shashwoo
in
PBC Foundation
6 years ago
LACK OF APPETITE
Hi hope you all had a good xmas, i haven't written anything on her for a long time, my question is about 5 months ago i really lost my appetite, in the sense that food bores me most of the time i really don't know what to cook for meals occasionally i can enjoy a meal but most of the time i feel i may
Hi hope you all had a good xmas, i haven't written anything on her for a long time, my question is about 5 months ago i really lost my appetite, in the sense that food bores me most of the time i really don't know what to cook for meals occasionally i can enjoy a meal but most of the time i feel i may
pbcdisease
in
PBC Foundation
6 years ago
Urso and rapid weight gain
Hello there, I've been searching for answers on this for a while now, but don't seem to be getting straightforward answers! I was diagnosed with PBC in October and have been on urso for about 10 weeks now. In the last 10 weeks, I seem to have gained a lot of weight quite quickly. I'm almost 14lbs heavier
Hello there, I've been searching for answers on this for a while now, but don't seem to be getting straightforward answers! I was diagnosed with PBC in October and have been on urso for about 10 weeks now. In the last 10 weeks, I seem to have gained a lot of weight quite quickly. I'm almost 14lbs heavier
Rachie34
in
PBC Foundation
6 years ago
New to the group but not PBC.
Hi. I’m 57 and was diagnosed with elevated liver enzymes in 2013 while getting routine blood tests at a Planned Parenthood visit. My Dr did not know why. I was not drinking. He wanted to put me on Prednisone and I refused due to the side affects. I went another year trying various liver cleanse and diet
Hi. I’m 57 and was diagnosed with elevated liver enzymes in 2013 while getting routine blood tests at a Planned Parenthood visit. My Dr did not know why. I was not drinking. He wanted to put me on Prednisone and I refused due to the side affects. I went another year trying various liver cleanse and diet
Chulachela
in
PBC Foundation
6 years ago
URSO in Spain
Hi I’m hoping to rent long term in Spain I take URSO and have yearly appointments. Is there anybody on here living in Spain who takes URSO and if so how much does it cost. I’m 68. Thanks in advance
Hi I’m hoping to rent long term in Spain I take URSO and have yearly appointments. Is there anybody on here living in Spain who takes URSO and if so how much does it cost. I’m 68. Thanks in advance
kingsnorth
in
PBC Foundation
6 years ago
Holiday stress
Hi dear PBC friends. So it's a busy time of year with Christmas holidays. I'm involved with my church and the Xmas pageant (tomorrow Sunday). Last night and today are long rehearsal hours. I help by providing the audio-sound. We're a smallish church so it's all volunteer for this kind of thing
Hi dear PBC friends. So it's a busy time of year with Christmas holidays. I'm involved with my church and the Xmas pageant (tomorrow Sunday). Last night and today are long rehearsal hours. I help by providing the audio-sound. We're a smallish church so it's all volunteer for this kind of thing
EileenUSA
in
PBC Foundation
6 years ago
Hypertension
Have hypertension that is not responding to lifestyle changes. I was diagnosed with PBC 8 years ago and doing ok on Urso. I am always very nervous about medications! Does anyone take daily medication for hypertension?
Have hypertension that is not responding to lifestyle changes. I was diagnosed with PBC 8 years ago and doing ok on Urso. I am always very nervous about medications! Does anyone take daily medication for hypertension?
Susn
in
PBC Foundation
6 years ago
Herbal tincture and LFTs update
Hi everyone, a couple of weeks ago I posted saying I was feeling frustrated that my numbers had gone up and thought it might be linked to having stopped my herbal tincture. Well I had another blood test and after just three weeks back on my herbs my numbers have started to drop slightly. So I’m over
Hi everyone, a couple of weeks ago I posted saying I was feeling frustrated that my numbers had gone up and thought it might be linked to having stopped my herbal tincture. Well I had another blood test and after just three weeks back on my herbs my numbers have started to drop slightly. So I’m over
Hils67
in
PBC Foundation
6 years ago
Quick update on me, bloodwork
I went off ocaliva last month, staying on urso, at doctors suggestion. My ALP was essentially unchanged from the last test. I’m starting a fibrate this weekend, hoping I will respond to that. Been sick for a couple weeks with strep and such but now feeling great and very optimistic about everything.
I went off ocaliva last month, staying on urso, at doctors suggestion. My ALP was essentially unchanged from the last test. I’m starting a fibrate this weekend, hoping I will respond to that. Been sick for a couple weeks with strep and such but now feeling great and very optimistic about everything.
Ottley3
in
PBC Foundation
6 years ago
Results!
Got my blood test results yesterday and down to 130 from 180 so over the moon that the urso tablets are working after 3 months. Spoke to my specialist and she is happy about the results and she is a big fan of PBC Foundation and very supportive. I can now go on holiday with peace of mind and hope
Got my blood test results yesterday and down to 130 from 180 so over the moon that the urso tablets are working after 3 months. Spoke to my specialist and she is happy about the results and she is a big fan of PBC Foundation and very supportive. I can now go on holiday with peace of mind and hope
nunbrook
in
PBC Foundation
6 years ago
Kidney pain/Kidney stones
Has anybody experienced kidney pain?I wasn't sure if it was PBC related or Urso related.It is sharp then goes away.My spouse gets frequent kidney stones so he thinks that is what it is.
Has anybody experienced kidney pain?I wasn't sure if it was PBC related or Urso related.It is sharp then goes away.My spouse gets frequent kidney stones so he thinks that is what it is.
PBCTracy
in
PBC Foundation
6 years ago
Urso dose
Hi everyone ❤️❤️ My hepatologist started urso with 1500mg/day. I’m 55kg. Isn’t it too much for me? Does anyone else take same dosage? Thank you
Hi everyone ❤️❤️ My hepatologist started urso with 1500mg/day. I’m 55kg. Isn’t it too much for me? Does anyone else take same dosage? Thank you
Sona_akb
in
PBC Foundation
6 years ago
Fibroscan
Hi I’ve was diagnosed ( by a liver biopsy) with pbc in 2008. I am on urso . Ive heard about fibroscan and am keen to have a second opinion using the scan as the other day my new doctor wondered at the diagnosis as my bloods are good!!. I explained it was by a biopsy but she has put the thought there
Hi I’ve was diagnosed ( by a liver biopsy) with pbc in 2008. I am on urso . Ive heard about fibroscan and am keen to have a second opinion using the scan as the other day my new doctor wondered at the diagnosis as my bloods are good!!. I explained it was by a biopsy but she has put the thought there
boneytoys
in
PBC Foundation
6 years ago
Diarrhea
I have been having diarrhea for about a week. Diagnosed 2 years ago and on Urso since diagnosed with no issues. Seems everything I eat just goes right through me.... ask my doc by message and of course his nurse answered but did not seem concerned..... could this mean I am worsening? 😢
I have been having diarrhea for about a week. Diagnosed 2 years ago and on Urso since diagnosed with no issues. Seems everything I eat just goes right through me.... ask my doc by message and of course his nurse answered but did not seem concerned..... could this mean I am worsening? 😢
Pamela4475
in
PBC Foundation
6 years ago
Advice
Hi, Diagnosed 2.5 yrs ago with PBC stage 3. Non responder to urso, have tried OCA but temporarily stopped due to intense itch. Since starting OCA I have had regular visits to liver nurse specialist. She tells me I now don’t need appointments with consultant as she can monitor me. Is this the norm. Given
Hi, Diagnosed 2.5 yrs ago with PBC stage 3. Non responder to urso, have tried OCA but temporarily stopped due to intense itch. Since starting OCA I have had regular visits to liver nurse specialist. She tells me I now don’t need appointments with consultant as she can monitor me. Is this the norm. Given
Starfish72
in
PBC Foundation
6 years ago
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