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Uva Ursi
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A good news story
I am happy to report that after seven years of walking on broken glass ( pustular psoriasis} I have been free of the pustules for six months. I had 48 sessions of PUVA with the wonderful team at Queens Hospital in Romford. This week I went back to see the Consultant and she was delighted too! I will
I am happy to report that after seven years of walking on broken glass ( pustular psoriasis} I have been free of the pustules for six months. I had 48 sessions of PUVA with the wonderful team at Queens Hospital in Romford. This week I went back to see the Consultant and she was delighted too! I will
hajoed
in
MY SKIN
9 years ago
Shaking and joint pain.
I'm really a bit worried now my hands shake quite a bit and my joints are painful especially my right shoulder. I've read on here that shoulder pain is common but what about the shakes? It's not all the time but at times it's quite noticeable by others. My partner says that I've changed over the past
I'm really a bit worried now my hands shake quite a bit and my joints are painful especially my right shoulder. I've read on here that shoulder pain is common but what about the shakes? It's not all the time but at times it's quite noticeable by others. My partner says that I've changed over the past
CathieG
in
PBC Foundation
9 years ago
Pbc for real now
Was told I had pbc a year ago but my biopsy showed nothing as of yet,I have done blood test every 3 months sense then.In Jan I was put on urso because my levels were increasing and I'm not feeling all that well. Friday I had a second opinion cuz they offered it to me so why not and yes I have pbc but
Was told I had pbc a year ago but my biopsy showed nothing as of yet,I have done blood test every 3 months sense then.In Jan I was put on urso because my levels were increasing and I'm not feeling all that well. Friday I had a second opinion cuz they offered it to me so why not and yes I have pbc but
renee29
in
PBC Foundation
9 years ago
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Urso
I was diagnosed in December and since then have been taking Urso. I have severe fatigue and currently signed off work. I read on the tablet information that blood tests should be taken after 28 days to check whether the medication is working. My consultant now tells me it has to be three months before
I was diagnosed in December and since then have been taking Urso. I have severe fatigue and currently signed off work. I read on the tablet information that blood tests should be taken after 28 days to check whether the medication is working. My consultant now tells me it has to be three months before
CathieG
in
PBC Foundation
9 years ago
Transplant
Hi I have bn diagnosed for few years now and bn on urso which now isnt working so I am now at stage 4. My consultant had referred me to transplant unit but my condition wasnt serious enough at the time however im due bk in 3 weeks to be reviewed again. I have raised lvts way up at 190,nauseau, fatigue
Hi I have bn diagnosed for few years now and bn on urso which now isnt working so I am now at stage 4. My consultant had referred me to transplant unit but my condition wasnt serious enough at the time however im due bk in 3 weeks to be reviewed again. I have raised lvts way up at 190,nauseau, fatigue
evelyn1
in
PBC Foundation
9 years ago
Fatigue
I have been on urso for about a month now and the tiredness I think is getting worse. My partner emplyed today that it was a coincidence that since my diagnosis I have got worse. Is it me or can that happen. I feel like I have no one that understands me. I am going to have to try to just get on with
I have been on urso for about a month now and the tiredness I think is getting worse. My partner emplyed today that it was a coincidence that since my diagnosis I have got worse. Is it me or can that happen. I feel like I have no one that understands me. I am going to have to try to just get on with
Michelle2015
in
PBC Foundation
9 years ago
Recently diagnosed
Hi there. I have been following all your interesting posts in here for a while, and thought it was about time to share my own story. I am 48 and Danish, but moved to UK a few years ago, so please excuse my bad english and misspellings. I was diagnosed with pbc in september 2014, and have had problems
Hi there. I have been following all your interesting posts in here for a while, and thought it was about time to share my own story. I am 48 and Danish, but moved to UK a few years ago, so please excuse my bad english and misspellings. I was diagnosed with pbc in september 2014, and have had problems
Lisbeth_66
in
PBC Foundation
9 years ago
Blood tests for tumor
Hi everyone, I was DIAGNOSED with PBC, been taking URSO 500MG twice a day, I've had blood tests and MRI scan & having a CT SCAN on Wednesday, I'm actually getting really frightened because the latest blood tests are a result of the mri scan revealing enlarged lymph nodes. I'm 45 yr old woman, I don't
Hi everyone, I was DIAGNOSED with PBC, been taking URSO 500MG twice a day, I've had blood tests and MRI scan & having a CT SCAN on Wednesday, I'm actually getting really frightened because the latest blood tests are a result of the mri scan revealing enlarged lymph nodes. I'm 45 yr old woman, I don't
Justineasprey
in
PBC Foundation
9 years ago
Yet Another "New Kid"
So I don't know if it matters, but I noticed through my reading that most of the posters are in the UK. I am in the US and have been reading the boards for a bit while I waited for the rest of my results to come in and for the final confirmation. I was informed on January 8th by my gastroenterologist
So I don't know if it matters, but I noticed through my reading that most of the posters are in the UK. I am in the US and have been reading the boards for a bit while I waited for the rest of my results to come in and for the final confirmation. I was informed on January 8th by my gastroenterologist
jmanderson1984
in
PBC Foundation
10 years ago
Fluctuating AMA positive, normal LFTs, raised IgM and ANA
I've been doing the rounds of consultants and blood tests since I hopped on the AMA bandwagon nearly two years ago, and somewhat frustratingly, my AMA has been been a weak positive for the three blood test done through my GP, and negative twice when done through Queen Elizabeth hospital. It's frustrating
I've been doing the rounds of consultants and blood tests since I hopped on the AMA bandwagon nearly two years ago, and somewhat frustratingly, my AMA has been been a weak positive for the three blood test done through my GP, and negative twice when done through Queen Elizabeth hospital. It's frustrating
Keren
in
PBC Foundation
10 years ago
PBC and Diabetes
Hi, I have just been diagnosed with PBC and have been put on URSO by my Liver Consultant who I have met once after being referred by my GP. I don't see him again until end of Feb. I am a diabetic on insulin and was wondering if my PBC is more likely t.o progress quicker due to being a diabetic as I have
Hi, I have just been diagnosed with PBC and have been put on URSO by my Liver Consultant who I have met once after being referred by my GP. I don't see him again until end of Feb. I am a diabetic on insulin and was wondering if my PBC is more likely t.o progress quicker due to being a diabetic as I have
Caz1908
in
PBC Foundation
10 years ago
Hello! Just stumbled across this and couldn't be happier!
Hi! My name is Taylor and I am 23 years old. I was diagnosed with PBC at 19 but they think it all started at 14. I had my gall bladder removed as precaution but it didn't help so after a few years of testing and such they came to the conclusion it was PBC. I've noticed its mostly people in their 40s
Hi! My name is Taylor and I am 23 years old. I was diagnosed with PBC at 19 but they think it all started at 14. I had my gall bladder removed as precaution but it didn't help so after a few years of testing and such they came to the conclusion it was PBC. I've noticed its mostly people in their 40s
TaylorC1991
in
PBC Foundation
10 years ago
Very lengthy but worth the read
Hi Everyone, If you haven't joined facebook, please do so and join PBCers Organization. There is a new medicine study which is good news, for people not responding well to Urso. There is a Dr who is trying to get more studies and get those of us with PBC the help and more attention to this disease
Hi Everyone, If you haven't joined facebook, please do so and join PBCers Organization. There is a new medicine study which is good news, for people not responding well to Urso. There is a Dr who is trying to get more studies and get those of us with PBC the help and more attention to this disease
donna01
in
PBC Foundation
10 years ago
Do you think your Pbc is worse since being diagnosed?
Hi all, Haven't posted in a long time. Dx with Pbc 8 months ago and been on urso 7 months. Bloods have gone back to normal. My mind, soul and body have not since learning about this disease. I worry consistently. Driving myself insane. I have the support of my husband and daughters. However my Mother
Hi all, Haven't posted in a long time. Dx with Pbc 8 months ago and been on urso 7 months. Bloods have gone back to normal. My mind, soul and body have not since learning about this disease. I worry consistently. Driving myself insane. I have the support of my husband and daughters. However my Mother
Geordielasstx
in
PBC Foundation
10 years ago
6 monthly checks?
Hi, my new consulant has put me on to 6 monthly checks as I have moles on my liver alongside/ because of the PBC. I don't know if this is his general prinicipal for PBC patients or just for me. He said there is a slightly increased risk of cancer. Does anyone else have this? I cycle most places, eat
Hi, my new consulant has put me on to 6 monthly checks as I have moles on my liver alongside/ because of the PBC. I don't know if this is his general prinicipal for PBC patients or just for me. He said there is a slightly increased risk of cancer. Does anyone else have this? I cycle most places, eat
Hidden
in
PBC Foundation
10 years ago
Bad days
Hi everyone, am kinda new at this. Was just recently diagnosed with pbc and still on a learning curve. Am on urso and was told it was for the rest of my life. Is it normal to have great days, where I feel nothing is wrong, and then have a really bad day..or two? The fatigue is the worst for me so
Hi everyone, am kinda new at this. Was just recently diagnosed with pbc and still on a learning curve. Am on urso and was told it was for the rest of my life. Is it normal to have great days, where I feel nothing is wrong, and then have a really bad day..or two? The fatigue is the worst for me so
Macushla
in
PBC Foundation
10 years ago
Cystitis sachets ok with Urso?
Hi. Does anyone suffer with cystitis? And if so, does anyone know whether taking the over-the-counter sachets which you dissolve in water are ok with Urso/PBC? Any help appreciated....until I can call the doctor in the morning!!!
Hi. Does anyone suffer with cystitis? And if so, does anyone know whether taking the over-the-counter sachets which you dissolve in water are ok with Urso/PBC? Any help appreciated....until I can call the doctor in the morning!!!
KK72
in
PBC Foundation
10 years ago
Nose Bleeds?
Hi, I have been getting short lived, light nose bleeds probably once a week/fortnight for quite a long time although they are not serious, I wondered if anyone else gets them and if they might be a side effect of our condition or the Urso medication?
Hi, I have been getting short lived, light nose bleeds probably once a week/fortnight for quite a long time although they are not serious, I wondered if anyone else gets them and if they might be a side effect of our condition or the Urso medication?
Mayflower53
in
PBC Foundation
10 years ago
Feeling down with PBC
I need to vent! When I was diagnosed a month or so ago I did not shed 1 tear. A couple of days ago I broke down mentally. PBC has warn me down I feel as those I have been robbed of my life as I know it. I am Stage 3 Fibrosis with bridging. I itch, nausea, pain, headaches..everything. I just couldnt
I need to vent! When I was diagnosed a month or so ago I did not shed 1 tear. A couple of days ago I broke down mentally. PBC has warn me down I feel as those I have been robbed of my life as I know it. I am Stage 3 Fibrosis with bridging. I itch, nausea, pain, headaches..everything. I just couldnt
shirley29485
in
British Liver Trust
10 years ago
urso and pbc
I have been on urso for 14 yrs. it went from $55 for a 3 mo supply to $800 and that's half price! My dr took me off urso for a month. my test results over doubled! GGT went from 360 to 689 and I started feeling sick to my stomach after eating sometimes and body aches. I also started itching of and on
I have been on urso for 14 yrs. it went from $55 for a 3 mo supply to $800 and that's half price! My dr took me off urso for a month. my test results over doubled! GGT went from 360 to 689 and I started feeling sick to my stomach after eating sometimes and body aches. I also started itching of and on
jpickle
in
PBC Foundation
10 years ago
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