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Important from The PBC Foundation....
We are asking for your help. 4/6/2024 Very directly. Very succinctly. We need your help. This is the most important thing the Foundation has ever worked on: more important than the surveys, more important than the helpline, more important than the name change. We are writing a letter which we
We are asking for your help. 4/6/2024 Very directly. Very succinctly. We need your help. This is the most important thing the Foundation has ever worked on: more important than the surveys, more important than the helpline, more important than the name change. We are writing a letter which we
DonnaBoll
Administrator
in
PBC Foundation
2 months ago
Wednesday's Word
[u][i]
Urso responder........
[/i][/u] Right now the criteria used is that the patients' alkaline phosphatase result is LESS than 1.67 times the upper limits of normal and the bilirubin results are less than one time the upper limits of normal. I know this can be very confusing. This is why
[u][i]
Urso responder........
[/i][/u] Right now the criteria used is that the patients' alkaline phosphatase result is LESS than 1.67 times the upper limits of normal and the bilirubin results are less than one time the upper limits of normal. I know this can be very confusing. This is why
DonnaBoll
Administrator
in
PBC Foundation
2 months ago
Wednesday's Word
[u][i]
Second line therapy
[/i][/u] [u][i][/i][/u]
This a term used In PBC a patient does not respond to Urso - usually within a year's time from the start of dosing. A different drug of choice is needed.
The only approved second line treatment is the use of Ovaliva (obeticholic acid
[u][i]
Second line therapy
[/i][/u] [u][i][/i][/u]
This a term used In PBC a patient does not respond to Urso - usually within a year's time from the start of dosing. A different drug of choice is needed.
The only approved second line treatment is the use of Ovaliva (obeticholic acid
DonnaBoll
Administrator
in
PBC Foundation
3 months ago
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Ocaliva and side effects
Hello everyone! I recently started taking ocaliva. I don't know if they help, I'm due to go and have some blood tests done. Pros...the sharp pain I used to occasionally have in the liver area is gone. Cons. The itchy skin drives me insane, can't sleep, I'm always tired and to add insult to injury some
Hello everyone! I recently started taking ocaliva. I don't know if they help, I'm due to go and have some blood tests done. Pros...the sharp pain I used to occasionally have in the liver area is gone. Cons. The itchy skin drives me insane, can't sleep, I'm always tired and to add insult to injury some
Beatris03
in
PBC Foundation
3 months ago
for our 'newest' members....
Hi - and welcome! My name is Donna - I facilitate this support group for The PBC Foundation - Health Unlocked. If you are new to your diagnosis, first of all, take a breath. It’s ok. We all, myself included, have been exactly where you are right now…. scared, unsure, mad, sad, and so much more. Stop
Hi - and welcome! My name is Donna - I facilitate this support group for The PBC Foundation - Health Unlocked. If you are new to your diagnosis, first of all, take a breath. It’s ok. We all, myself included, have been exactly where you are right now…. scared, unsure, mad, sad, and so much more. Stop
DonnaBoll
Administrator
in
PBC Foundation
3 months ago
Elevated Vitamin B 12
i am embarrassed to write this ,,,my bloods cam back after six months of Urso and my ALP went from 385 to 175, AST and ALT are now normal. I was so excited…..then i saw my Vitamin V 12 result. ULN here is 652…mine was 1101. I was taking a very high supplement of 10 000 mcg/day! I also eat a lot of
i am embarrassed to write this ,,,my bloods cam back after six months of Urso and my ALP went from 385 to 175, AST and ALT are now normal. I was so excited…..then i saw my Vitamin V 12 result. ULN here is 652…mine was 1101. I was taking a very high supplement of 10 000 mcg/day! I also eat a lot of
Gaspereaux
in
British Liver Trust
3 months ago
Urso and gallstones
A recent ultrasound revealed possible gallstone blocking a bile duct. An MRCP was recommended and carried out a couple of weeks ago although more like an MRI as no contrast was administered. I now have an appointment in June but I'm not sure what for. My concern is from reading the Urso leaflet it
A recent ultrasound revealed possible gallstone blocking a bile duct. An MRCP was recommended and carried out a couple of weeks ago although more like an MRI as no contrast was administered. I now have an appointment in June but I'm not sure what for. My concern is from reading the Urso leaflet it
Cressy
in
PBC Foundation
3 months ago
Don't Underestimate Yourself
I have for the last 7+ years I have had the privilege of facilitating a support group for those who have been diagnosed with PBC. I can honestly say that there is not a more brave or determined group of men and women. None of us know what the future holds once we're diagnosed. Will the Urso work? Will
I have for the last 7+ years I have had the privilege of facilitating a support group for those who have been diagnosed with PBC. I can honestly say that there is not a more brave or determined group of men and women. None of us know what the future holds once we're diagnosed. Will the Urso work? Will
DonnaBoll
Administrator
in
PBC Foundation
3 months ago
Welcome to more of our new members
Hi - and welcome! My name is Donna - I facilitate this support group for The PBC Foundation - Health Unlocked. If you are new to your diagnosis, first of all, take a breath. It’s ok. We all, myself included, have been exactly where you are right now…. scared, unsure, mad, sad, and so much more. Stop
Hi - and welcome! My name is Donna - I facilitate this support group for The PBC Foundation - Health Unlocked. If you are new to your diagnosis, first of all, take a breath. It’s ok. We all, myself included, have been exactly where you are right now…. scared, unsure, mad, sad, and so much more. Stop
DonnaBoll
Administrator
in
PBC Foundation
3 months ago
Why would my Alk Phos go up after just starting urso?
Hi All, I have a question and wondered if anyone had an answer to if they had a similar experience. I just started taking Urso and have been on it now close to a month my recent blood work shows that my Alk Phos has increased rather than decreased. While I know it may take awhile for Urso to potentially
Hi All, I have a question and wondered if anyone had an answer to if they had a similar experience. I just started taking Urso and have been on it now close to a month my recent blood work shows that my Alk Phos has increased rather than decreased. While I know it may take awhile for Urso to potentially
Toddyboo
in
PBC Foundation
4 months ago
for some of our newer members
Hi - and welcome! My name is Donna - I facilitate this support group for The PBC Foundation - Health Unlocked. If you are new to your diagnosis, first of all, take a breath. It’s ok. We all, myself included, have been exactly where you are right now…. scared, unsure, mad, sad, and so much more. Stop
Hi - and welcome! My name is Donna - I facilitate this support group for The PBC Foundation - Health Unlocked. If you are new to your diagnosis, first of all, take a breath. It’s ok. We all, myself included, have been exactly where you are right now…. scared, unsure, mad, sad, and so much more. Stop
DonnaBoll
Administrator
in
PBC Foundation
4 months ago
Ocaliva
Hi everybody, I’ve just been told that I should now start ocaliva aswell as urso I’m so worried about side effects after reading up on it, wondering how many of youse are getting on with it did you have lots of side effects ect!!
Hi everybody, I’ve just been told that I should now start ocaliva aswell as urso I’m so worried about side effects after reading up on it, wondering how many of youse are getting on with it did you have lots of side effects ect!!
Lena2011
in
PBC Foundation
4 months ago
Wednesday's Word
[u]
PP
[/u][u][i]
AR drugs
[/i][/u] - This is a class of drugs used as second line treatment in Urso non responders. These drugs have long been used as a lipid lowering drugs - although now statins are more widely used for this purpose of lowering cholesterol. They are not yet approved by
[u]
PP
[/u][u][i]
AR drugs
[/i][/u] - This is a class of drugs used as second line treatment in Urso non responders. These drugs have long been used as a lipid lowering drugs - although now statins are more widely used for this purpose of lowering cholesterol. They are not yet approved by
DonnaBoll
Administrator
in
PBC Foundation
4 months ago
Rheumatoid?
So….because I was suffering from lower back pain (not sure if it is from PBC, URSO or an injury just before diagnosis!), i could not play Pickleball over the winter months. Instead, i decided to really invest my time into my fiddle. I spent many hours a day for almost four months practising (with an
So….because I was suffering from lower back pain (not sure if it is from PBC, URSO or an injury just before diagnosis!), i could not play Pickleball over the winter months. Instead, i decided to really invest my time into my fiddle. I spent many hours a day for almost four months practising (with an
Gaspereaux
in
British Liver Trust
4 months ago
another pharma update
This is in regards to the pharma Ipsen... They are trialing a drug called Elafibranor. It is being used for treatment in PBC, biliary atresia (in children) , PSC, Alagille Syndrome, and Primary Familial Cholestasis. With patients taking Urso, often up to 40% do not see improvement. 3-5% of patients
This is in regards to the pharma Ipsen... They are trialing a drug called Elafibranor. It is being used for treatment in PBC, biliary atresia (in children) , PSC, Alagille Syndrome, and Primary Familial Cholestasis. With patients taking Urso, often up to 40% do not see improvement. 3-5% of patients
DonnaBoll
Administrator
in
PBC Foundation
4 months ago
Seladelpar update
About a month or more ago, I wrote about this upcoming drug's potentially to be the next drug for second line treatment. By that I mean that for some reason someone was not responding to or not able to take Urso. 40% of patients are failed by Urso. Cymabay, the pharma who manufacturers Seladelpar,
About a month or more ago, I wrote about this upcoming drug's potentially to be the next drug for second line treatment. By that I mean that for some reason someone was not responding to or not able to take Urso. 40% of patients are failed by Urso. Cymabay, the pharma who manufacturers Seladelpar,
DonnaBoll
Administrator
in
PBC Foundation
4 months ago
Introduction to our newer members
Hi - and welcome! My name is Donna - I facilitate this support group for The PBC Foundation - Health Unlocked. First of all, take a breath. It’s ok. We all, myself included, have been exactly where you are right now…. scared, unsure, mad, sad, and so much more. Stop googling for information - get your
Hi - and welcome! My name is Donna - I facilitate this support group for The PBC Foundation - Health Unlocked. First of all, take a breath. It’s ok. We all, myself included, have been exactly where you are right now…. scared, unsure, mad, sad, and so much more. Stop googling for information - get your
DonnaBoll
Administrator
in
PBC Foundation
4 months ago
What if?
I mentioned to you that one of the main premises of the Summit was to think about "what ifs" that we could change about how PBC is perceived and/or treated. One of these suggestions was "
what if
" we could totally eliminate the use of placebos in all clinical trials. Some of you may have participated
I mentioned to you that one of the main premises of the Summit was to think about "what ifs" that we could change about how PBC is perceived and/or treated. One of these suggestions was "
what if
" we could totally eliminate the use of placebos in all clinical trials. Some of you may have participated
DonnaBoll
Administrator
in
PBC Foundation
4 months ago
Possible Sjogren’s
I was diagnosed with PBC in 2005 and have been on URSO since diagnosis. No significant change in my PBC in all these years. Also, have Hashimoto’s 2016, and Oral Lichen Planus 2021. Recently, I was in the ER because I developed a speech issue. My family thought it was a stroke. Bottom line is, all the
I was diagnosed with PBC in 2005 and have been on URSO since diagnosis. No significant change in my PBC in all these years. Also, have Hashimoto’s 2016, and Oral Lichen Planus 2021. Recently, I was in the ER because I developed a speech issue. My family thought it was a stroke. Bottom line is, all the
PB4857
in
PBCers Organization
4 months ago
Brain Fog
Good morning, I was diagnosed in November from routine bloodwork with PBC. Started URSO immediately, but at 750 mg URSO daily which, at 61 kg, may not be enough. I dont have tests again until mid May. Can it still have some positive effect? Can brain fog be a result of URSO not working? I can
Good morning, I was diagnosed in November from routine bloodwork with PBC. Started URSO immediately, but at 750 mg URSO daily which, at 61 kg, may not be enough. I dont have tests again until mid May. Can it still have some positive effect? Can brain fog be a result of URSO not working? I can
Gaspereaux
in
PBC Foundation
4 months ago
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