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Uva Ursi
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Bad days!
Diagnosed with pbc in June and I am on 1000mg of urso. Had a dexa scan and ultra scan get results in a couple of weeks. Recently had fingerprint bruising Lowe part of body especially abdomen. Last few days I have felt so tired and weak. Headache, pain in hips and thighs. Not sleeping well, woke up and
Diagnosed with pbc in June and I am on 1000mg of urso. Had a dexa scan and ultra scan get results in a couple of weeks. Recently had fingerprint bruising Lowe part of body especially abdomen. Last few days I have felt so tired and weak. Headache, pain in hips and thighs. Not sleeping well, woke up and
Lcagar63
in
PBC Foundation
8 years ago
Ascites
I am experiencing continued edema (though medications have helped significantly) and I believe I am experiencing some ascites. Frankly, it scares me to death. I'm trying to maintain a lower-salt, higher-protein diet; lose weight; and eat appropriately for someone who's undergone gastric banding surgery
I am experiencing continued edema (though medications have helped significantly) and I believe I am experiencing some ascites. Frankly, it scares me to death. I'm trying to maintain a lower-salt, higher-protein diet; lose weight; and eat appropriately for someone who's undergone gastric banding surgery
tntarheel
in
PBC Foundation
8 years ago
Fenofibrate
Hi everyone, Some of you may remember I was asking last year if anyone had been prescribed fenofibrate to manage their PBC. At the time after about 18 months of appearing to respond to urso, my liver function tests became quite elevated over a short period of time. After several repeats of blood tests
Hi everyone, Some of you may remember I was asking last year if anyone had been prescribed fenofibrate to manage their PBC. At the time after about 18 months of appearing to respond to urso, my liver function tests became quite elevated over a short period of time. After several repeats of blood tests
Puddles
in
PBC Foundation
8 years ago
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How to get access to new medication...?
I've got PBC for several years now, first with good results on urso. In the last three year my liverfunction tests got worse and worse. So, I'm one of the non responders on urso. In the US obeticolic acid has gone through an accelerated procedure of FDA approval and is now available for patients. Not
I've got PBC for several years now, first with good results on urso. In the last three year my liverfunction tests got worse and worse. So, I'm one of the non responders on urso. In the US obeticolic acid has gone through an accelerated procedure of FDA approval and is now available for patients. Not
Marg1974
in
PBC Foundation
8 years ago
Flu jab
Hi everyone I hope you are having a good day today. I was diagnosed with pbc in early July and I am currently adjusting to taking Urso. I have an appointment with my Gp tomorrow. The surgery have written to me about having a flu jab. I am intending to discuss this tomorrow. Has anyone had the flu jab
Hi everyone I hope you are having a good day today. I was diagnosed with pbc in early July and I am currently adjusting to taking Urso. I have an appointment with my Gp tomorrow. The surgery have written to me about having a flu jab. I am intending to discuss this tomorrow. Has anyone had the flu jab
jemlola
in
PBC Foundation
8 years ago
Jackie - new member
Hi. Was thought to have PBC back in 2005 but nobody followed it up. After having further regular blood tests a couple of years back PBC was immediately diagnosed due to elevated liver function tests and was referred to a specialist. My original specialist saw me every 3 months did annual MRI and Bone
Hi. Was thought to have PBC back in 2005 but nobody followed it up. After having further regular blood tests a couple of years back PBC was immediately diagnosed due to elevated liver function tests and was referred to a specialist. My original specialist saw me every 3 months did annual MRI and Bone
Mollymoo50
in
PBC Foundation
8 years ago
Feeling good!
Just like to say I have been diagnosed with pbc since June. Have been taking urso 1000mg a day.in the last week or so I have felt really good.my bowels have settled and I am hoping the Medication has set in and things are on the up. Definitely feeling better I hope it lasts.
Just like to say I have been diagnosed with pbc since June. Have been taking urso 1000mg a day.in the last week or so I have felt really good.my bowels have settled and I am hoping the Medication has set in and things are on the up. Definitely feeling better I hope it lasts.
Lcagar63
in
PBC Foundation
8 years ago
Is anyone on the new drug Ocaliva?
I went to my doctor today and he was very excited to tell me about this new drug Ocaliva for PBC that got FDA approved at the end of May and available since June. He wants my ALP numbers to go down more so I will be taking 2 URSO pills + 1 Ocaliva 5mg pill per day. I was taking 3 URSOs per day. The side
I went to my doctor today and he was very excited to tell me about this new drug Ocaliva for PBC that got FDA approved at the end of May and available since June. He wants my ALP numbers to go down more so I will be taking 2 URSO pills + 1 Ocaliva 5mg pill per day. I was taking 3 URSOs per day. The side
Pea1234
in
PBC Foundation
8 years ago
Living with pbc and under active thyroid and hopefully nothing else!!!!
I am a 53 year old woman from London.was feeling ill for over 2 years. Feeling tired washed out depressed and angry. A routine hospital appointment picked up wrong blood levels in August 2014. Wrong blood tests carried on until November 2015 when I was diagnosed with under active thyroid. Still felt
I am a 53 year old woman from London.was feeling ill for over 2 years. Feeling tired washed out depressed and angry. A routine hospital appointment picked up wrong blood levels in August 2014. Wrong blood tests carried on until November 2015 when I was diagnosed with under active thyroid. Still felt
Lcagar63
in
PBC Foundation
8 years ago
Finally have a diagnosis.
I Had my biopsy on June 28th and it was an awful experience, the Dr apparently did not take a big enough piece and although they can confirm that it is pbc and it is severe, they cannot tell me what stage I am in as the sample was too small. He didn't go in through the side. He went in through my chest
I Had my biopsy on June 28th and it was an awful experience, the Dr apparently did not take a big enough piece and although they can confirm that it is pbc and it is severe, they cannot tell me what stage I am in as the sample was too small. He didn't go in through the side. He went in through my chest
AllieCraw
in
PBC Foundation
8 years ago
Not feeling well on URSO after on it for 2 months
Hi again hope everyone is doing good today, I wonder if anyone here on URSO has not felt well after taking it for a couple of months? I have had cold like symptoms and cough more asthma flares swollen tight feeling in neck and throat and belly pain distension right upper belly pain where the liver is
Hi again hope everyone is doing good today, I wonder if anyone here on URSO has not felt well after taking it for a couple of months? I have had cold like symptoms and cough more asthma flares swollen tight feeling in neck and throat and belly pain distension right upper belly pain where the liver is
Michiganpbc
in
PBC Foundation
8 years ago
New Trials Beginning on a new medication to help those whi dont respond well to URSo
http://www.ksat.com/health/new-hope-for-pbc-liver-disease there is a new trial on a medication to help those who dont respond well to URSODiol
http://www.ksat.com/health/new-hope-for-pbc-liver-disease there is a new trial on a medication to help those who dont respond well to URSODiol
bartholomewpatri
in
PBC Foundation
8 years ago
Nausea
Hi, I have recently been diagnosed with PBC, I have found the information I have found here really useful and reasuring. I was prescribed urso and deloxetine but had to stop taking the deloxetine due to horrendous side effects. I have been getting awful nausea and stomach/back pain for a week, this tends
Hi, I have recently been diagnosed with PBC, I have found the information I have found here really useful and reasuring. I was prescribed urso and deloxetine but had to stop taking the deloxetine due to horrendous side effects. I have been getting awful nausea and stomach/back pain for a week, this tends
Jules-S
in
PBC Foundation
8 years ago
Fibroscan and Urso...
Well folks just a small update from me. I went to the liver unit in King's and had my fibroscan which came out with a score of 10.4. Not great but I guess using the glass is half full approach it could have been so much worse. The doctor has put me on Urso (naturally) and said she'd get a few more
Well folks just a small update from me. I went to the liver unit in King's and had my fibroscan which came out with a score of 10.4. Not great but I guess using the glass is half full approach it could have been so much worse. The doctor has put me on Urso (naturally) and said she'd get a few more
AdeleMalcolm
in
PBC Foundation
8 years ago
To take or not to take Urso!!!!
I have been diagnosed with PBC in 2010 and have been taking Urso for 6 years. I have my LFT's done regularly and the results are a bit like a roller-coaster. Although my various LFT's continue to rise my ALP levels are always extremely high. After a couple of years I had not seen any improvement through
I have been diagnosed with PBC in 2010 and have been taking Urso for 6 years. I have my LFT's done regularly and the results are a bit like a roller-coaster. Although my various LFT's continue to rise my ALP levels are always extremely high. After a couple of years I had not seen any improvement through
TracG
in
PBC Foundation
8 years ago
New GI states Urso will not help my PBC
I was diagnosed last August with PBC and prescribed Urso. Although I never started taking the drug, I have since moved and therefore decided to follow up on this disease with new GI. He stated that if I truly have PBC, Urso will not help. So confused. See this article by the The International LIver Congress
I was diagnosed last August with PBC and prescribed Urso. Although I never started taking the drug, I have since moved and therefore decided to follow up on this disease with new GI. He stated that if I truly have PBC, Urso will not help. So confused. See this article by the The International LIver Congress
kauthement
in
PBC Foundation
8 years ago
ALP spiked after three 2 years stable
Hello all. My ALP responded quickly to URSO when I was diagnosed in 2014. I started having pain again off and on and lately more on. I have had three surgeries in the last year. My thyroid removed for cancer, a fibroid removed with a ovary and an emergency removal of the other ovary. The last one
Hello all. My ALP responded quickly to URSO when I was diagnosed in 2014. I started having pain again off and on and lately more on. I have had three surgeries in the last year. My thyroid removed for cancer, a fibroid removed with a ovary and an emergency removal of the other ovary. The last one
NotorDJP
in
PBC Foundation
8 years ago
Pain in Eyes? Dry Eye maybe?
Hi Everyone, I have limited Wifi to get online since recently selling my home to size down and still haven't found what I need. Meanwhile I have missed much of what has been happening here and have a few questions. Since my going on Urso 500 mg 2x a day I have struggled with something I wasn't expecting
Hi Everyone, I have limited Wifi to get online since recently selling my home to size down and still haven't found what I need. Meanwhile I have missed much of what has been happening here and have a few questions. Since my going on Urso 500 mg 2x a day I have struggled with something I wasn't expecting
DeeSree
in
PBC Foundation
8 years ago
Just been diagnosed with PBC
Hi I'm a 48 year old Mum of twins aged 16, went for a routine blood test in May this year and after 8 blood tests (all with LFTs abnormalities), positive AMA and a liver biopsy, I have been diagnosed with PBC - shocked and overwhelmed to say the least - i started taking the medication URSO on Sunday
Hi I'm a 48 year old Mum of twins aged 16, went for a routine blood test in May this year and after 8 blood tests (all with LFTs abnormalities), positive AMA and a liver biopsy, I have been diagnosed with PBC - shocked and overwhelmed to say the least - i started taking the medication URSO on Sunday
Chappers2204
in
PBC Foundation
8 years ago
Diagnosed today. Scared
Hi everyone i was diagnosed today with pbc. I had a blood test done called mitochondrial (m2) antibody. It showed me at level 76.4. I recently had my gallbladder removed march 10th 2016 as well as a liver biopsy. I had went to a previous surgeon and he wouldn't do surgery because he said i had cirrhosis
Hi everyone i was diagnosed today with pbc. I had a blood test done called mitochondrial (m2) antibody. It showed me at level 76.4. I recently had my gallbladder removed march 10th 2016 as well as a liver biopsy. I had went to a previous surgeon and he wouldn't do surgery because he said i had cirrhosis
nessarose714
in
PBC Foundation
8 years ago
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