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Pbc with psc overlap
Hi can anyone help me , I was diagnosed with Pbc in 2012 and have been on urso since then , but my alt and my ALK phos remains high . I was referred to Addenbrooks and was told they were going to try a 2nd line Treatment. When it went to the MDT board they looked at my scans and now think I have a PSC
Hi can anyone help me , I was diagnosed with Pbc in 2012 and have been on urso since then , but my alt and my ALK phos remains high . I was referred to Addenbrooks and was told they were going to try a 2nd line Treatment. When it went to the MDT board they looked at my scans and now think I have a PSC
Kieraferret
in
PBC Foundation
2 years ago
Urso brands
Hi you lovely lot i havent been on here for a while but im in a desperate attempt to find a particular urso brand im unsure if its been discontinued or just changed packaging but it used to come in a grey tub with a white lid if anyone can assist me with this it would be greatly appreciated as its the
Hi you lovely lot i havent been on here for a while but im in a desperate attempt to find a particular urso brand im unsure if its been discontinued or just changed packaging but it used to come in a grey tub with a white lid if anyone can assist me with this it would be greatly appreciated as its the
Char_char1980
in
PBC Foundation
2 years ago
Mentally struggling following diagnosis
Really struggling mentally after diagnosis. I'm 38 with a 2 year old son. I also suffered a miscarriage 2 weeks before diagnosis. Just feeling like my life is over and I won't get to see my son grow up. I think I'm early stages Alp was 260 last blood test and fibroscan was ok I think at 4.4. Started
Really struggling mentally after diagnosis. I'm 38 with a 2 year old son. I also suffered a miscarriage 2 weeks before diagnosis. Just feeling like my life is over and I won't get to see my son grow up. I think I'm early stages Alp was 260 last blood test and fibroscan was ok I think at 4.4. Started
Dawn118
in
PBC Foundation
2 years ago
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Confused and freaking out
Hi, I should preface this by saying that I have OCD, and, since having my son, health anxiety. I don’t cope well with the unknown and I know I need to find strategies for dealing with fluctuations in my condition given the nature of PBC. I was diagnosed in around 2010, and have generally responded well
Hi, I should preface this by saying that I have OCD, and, since having my son, health anxiety. I don’t cope well with the unknown and I know I need to find strategies for dealing with fluctuations in my condition given the nature of PBC. I was diagnosed in around 2010, and have generally responded well
Smarties18
in
PBC Foundation
3 years ago
Low blood platelets
Hi I've been diagnosed with Pbc along with Sjogrens for over 2yrs. I am an Urso responder. My last blood test showed my ALP in normal range and ALT slightly high. I was very pleased but I now have slightly low platelets 126, norm 150. I don't understand why I can have a normal ALP and then this happen
Hi I've been diagnosed with Pbc along with Sjogrens for over 2yrs. I am an Urso responder. My last blood test showed my ALP in normal range and ALT slightly high. I was very pleased but I now have slightly low platelets 126, norm 150. I don't understand why I can have a normal ALP and then this happen
Beatrice110924
in
PBC Foundation
3 years ago
Acid ursodeoxycholic and Fenofibrate for PBC
Hiya! An internist suggested that mixing the urso with fenofibrate has shown good results for patients with PBC. I was recently diagnosed with PBC overlap AIH. Are any of you talking it together? Any insight that you could share with me?
Hiya! An internist suggested that mixing the urso with fenofibrate has shown good results for patients with PBC. I was recently diagnosed with PBC overlap AIH. Are any of you talking it together? Any insight that you could share with me?
KikiMilena
in
PBC Foundation
3 years ago
PBC, cirrhosis, and now fatty liver?
Wow, I'm so confused! I was diagnosed with PBC that had already reached cirrhosis about six years ago. I discovered that a Chinese herbal I was taking (for insomnia) was likely part of the problem...it was banned in Canada without me knowing due to it causing liver, brain and nerve damage. After I stopped
Wow, I'm so confused! I was diagnosed with PBC that had already reached cirrhosis about six years ago. I discovered that a Chinese herbal I was taking (for insomnia) was likely part of the problem...it was banned in Canada without me knowing due to it causing liver, brain and nerve damage. After I stopped
islandanonymous
in
British Liver Trust
3 years ago
PBC fatigue vaccine question
Hi Everyone. I was diagnosed around 10 years ago with PBC. Urso worked at first, then they had to increase the dose. Ocaliva was added a couple of years ago. I find my exhausted bad days are becoming more frequent and find this discouraging. Just wondering how others have faired after the vaccine. I
Hi Everyone. I was diagnosed around 10 years ago with PBC. Urso worked at first, then they had to increase the dose. Ocaliva was added a couple of years ago. I find my exhausted bad days are becoming more frequent and find this discouraging. Just wondering how others have faired after the vaccine. I
pbcgirl
in
PBC Foundation
3 years ago
Tablet or capsule
I've taken Urso tablets for 10 years now. I just received the Medicare Part D formulary for 2022 and Urso tablets are no longer covered. However Urso capsules are covered. Does anyone take the capsules?
I've taken Urso tablets for 10 years now. I just received the Medicare Part D formulary for 2022 and Urso tablets are no longer covered. However Urso capsules are covered. Does anyone take the capsules?
Susn
in
PBC Foundation
3 years ago
elevated ALP ALT AST
hi there everyone! im 9 year post liver transplant and 6 years ago i was diagnosed with PTLD and recurrent PBC was put on ursodiol which within a few months lowered levels almost to normal but unfortunately my most recent blood work showed ALP of 196 and ALT of44 AST 44 all very elevated. due to gastrointestinal
hi there everyone! im 9 year post liver transplant and 6 years ago i was diagnosed with PTLD and recurrent PBC was put on ursodiol which within a few months lowered levels almost to normal but unfortunately my most recent blood work showed ALP of 196 and ALT of44 AST 44 all very elevated. due to gastrointestinal
azzurra
in
PBC Foundation
3 years ago
Hello friends, Just curious on symptoms I have been having since starting Urso 7 months ago.
Anyone get a horse voice about 10 minutes after taking their Urso dose? I take 250mg 3 times a day. I also get very sleepy for about 15 minutes after each dose, then all is good. =]
Anyone get a horse voice about 10 minutes after taking their Urso dose? I take 250mg 3 times a day. I also get very sleepy for about 15 minutes after each dose, then all is good. =]
Laurie62
in
PBC Foundation
3 years ago
Bezafibrate combined with Urso
Hi all , not posted for a while but was wondering in anyone been trialled on Bezafibrate alongside Urso to try bring ALP down to near normal range ? It’s not licensed for PBC in Uk but according to Gastro has good evidence of helping ? Iv been on Urso now for 2 yrs but alp still high at 238 and GGT
Hi all , not posted for a while but was wondering in anyone been trialled on Bezafibrate alongside Urso to try bring ALP down to near normal range ? It’s not licensed for PBC in Uk but according to Gastro has good evidence of helping ? Iv been on Urso now for 2 yrs but alp still high at 238 and GGT
Cody23
in
PBC Foundation
3 years ago
Life expectancy about onlyj
Hi Robert yes l have read many misleading information. I was diagnosed and started on Urso in 2012 At that time being extremely sick since 2008 when my liver failed and kidneys and even heart. The country hospital being unable to diagnose me. I spent at least a year at home curled up with everything
Hi Robert yes l have read many misleading information. I was diagnosed and started on Urso in 2012 At that time being extremely sick since 2008 when my liver failed and kidneys and even heart. The country hospital being unable to diagnose me. I spent at least a year at home curled up with everything
Deasimjay
in
PBC Foundation
3 years ago
How long does URSO take to work PBC
Looking for a guide to how long it can taje for LFTs to return to normal whwn starting URSO
Looking for a guide to how long it can taje for LFTs to return to normal whwn starting URSO
sezzey
in
British Liver Trust
3 years ago
Urso side effects?
Anyone on URSO experiencing oily skin since starting the medication?
Anyone on URSO experiencing oily skin since starting the medication?
Leeanne83
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
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
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
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