PBCers Organization | HealthUnlocked

PBCers Organization

1,459 members•288 posts

Ursodiol

I was diagnosed with PBC in July 2021. I have been on Urso since my diagnosis. I take 600 mg daily. I had lab a week ago & don't have the results but I...

I was diagnosed with PBC in July 2021. I have been on Urso since my diagnosis. ...

Mimisboysx3

•14 days ago

3 Replies

scary continued

I’m not being disrespectful. I just don’t get it. Have I had it so long I just accept it as normal? I really hate knowing I have this. I hate having to decide...

I’m not being disrespectful. I just don’t get it. Have I had it so long I just a...

DoxieShamrock

•1 month ago

5 Replies

scarey

I was diagnosed over 10 years ago. I’m on Urso for PBC. My levels went up slightly about 2 yrs ago. Prior to that my Dr said if he didn’t see my test results,...

I was diagnosed over 10 years ago. I’m on Urso for PBC. My levels went up slight...

DoxieShamrock

•1 month ago

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PBC LIFE

I was diagnosed with PBC and 2017. My alkaline phosphate levels were 277. I was told I was gonna go in the liver transplant list or I was going to die. I was...

I was diagnosed with PBC and 2017. My alkaline phosphate levels were 277. I was...

TonidMother58unkin1

•2 months ago

1 Reply

PBC for over 20years

I am Mary Williams . I have had PBC for 20+ years and I have been taking URSO the whole time. I have no side effects from the medication. I have never met...

I am Mary Williams . I have had PBC for 20+ years and I have been taking URSO ...

Icecream79

•2 months ago

7 Replies

Unsure about diagnosis of PBC

Hi everyone, this is my first post as I've just had a diagnosis of possible PBC. My ALP has been hovering between 550-700 and was 640 on last bloods and ALT...

Hi everyone, this is my first post as I've just had a diagnosis of possible PBC....

JustChillin68

•2 months ago

6 Replies

low iron and ursodiol

i’ve been on Urso for about two years now with good results and bringing my numbers back to the normal range. In the last year, I’ve been dealing with...

i’ve been on Urso for about two years now with good results and bringing my num...

g00dandplenty

•2 months ago

2 Replies

hello pbcers

I sm in Louisiana USA. Pbc diagnosed 2015. Now stage 4 cirrhosis started undo today I don’t like it already. CA survivor from 2003 breast. Here I sm

I sm in Louisiana USA. Pbc diagnosed 2015. Now stage 4 cirrhosis started und...

Maryob8844

•3 months ago

5 Replies

Fibroscan

I had my first fibroscan last week. No disease progression in 4 years. Diagnosed in 2019ish. Im 62 years old. 😁 Stage 1. My ALP did rise though, so my Dr....

I had my first fibroscan last week. No disease progression in 4 years. Diagnosed...

TanGram

•5 months ago

5 Replies

Acyclovir for fever blisters?

Some years ago I was prescribed Acyclovir cream for my mouth fever blisters rather than the oral medicine because the oral can raise liver enzymes. However I...

Some years ago I was prescribed Acyclovir cream for my mouth fever blisters rath...

Twojer

•5 months ago

2 Replies

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...

I was diagnosed with PBC in 2005 and have been on URSO since diagnosis. No signi...

PB4857

•7 months ago

3 Replies

Hair loss from Urso

Hi all! Has anyone had hair loss from URSO that re-grew when/if you stopped? I seem to be thinning more + my eyebrows are thinning. I'm wondering also if TUDCA...

Hi all! Has anyone had hair loss from URSO that re-grew when/if you stopped? I s...

Pawsandchoc

•8 months ago

19 Replies

Any PBCers with PBC and Myeloproliferative Neoplasm? e.g. Essential Thrombocythemia

Hi All, toddyboo here, I was just wondering if there were any PBCers out there who have PBC along with an MPN? The reason I ask is I have essential...

Hi All, toddyboo here, I was just wondering if there were any PBCers out there...

Toddyboo

•8 months ago

2 Replies

Increase dosage of Lisinopril

I am taking 10mg of Lisinopril for 4 years although my blood pressure reduced from 180+ it reduced it to 130/90. It is now risen to 145/98 recently. In this 2...

I am taking 10mg of Lisinopril for 4 years although my blood pressure reduced f...

Bolan1972

•8 months ago

1 Reply

Beet or beetroot juice

Are beet juice or beetroot juice good for liver health while having PBC? Thanks

Are beet juice or beetroot juice good for liver health while having PBC? Thank...

iagra

•9 months ago

7 Replies

Curious about PBC symptoms and LFTs at Diagnosis

Hello Everyone, I am new to the group and I was recently diagnosed with PBC and I was wondering if anyone could share what symptoms they might have been...

Hello Everyone, I am new to the group and I was recently diagnosed with PBC an...

Toddyboo

•9 months ago

18 Replies

Lisinopril

Does anyone take Lisinopril for elevated blood pressure and have you had any problems with elevated LFTs?

Does anyone take Lisinopril for elevated blood pressure and have you had any pro...

Twojer

•9 months ago

5 Replies

Cholesterol

How many have high cholesterol 300 plus but LDL is also high and HDL is so high can't be calculated. Triglycerides are normal. Had genetic testing all normal....

How many have high cholesterol 300 plus but LDL is also high and HDL is so high ...

Lawyers

•10 months ago

4 Replies

portland oregon

Hi, I was diagnosed with PBC 10 years ago was taking Urso for 5 yrs, I have been doing okay 👍

Hi, I was diagnosed with PBC 10 years ago was taking Urso for 5 yrs, I have bee...

susanashworth

•10 months ago

1 Reply

Triple Trouble and Tacrolimus

58, diagnosed w/ AIH IN 2002 & multi auto-immune (Crohn’s, Thyroid, Arthritis, Neuropathy +++)and then added PBC overlap officially in 2020, same time as...

58, diagnosed w/ AIH IN 2002 & multi auto-immune (Crohn’s, Thyroid, Arthritis, N...

Gardengrl

•11 months ago

7 Replies

Ages. Who's our youngest, who's our oldest, just one side effect, and your state you live in. 😁

Just for fun. I'll startLaurie 62 years old Fatigue From Washington State, snowbird in Arizona and also Oregon =)

Just for fun. I'll startLaurie 62 years old Fatigue From Washington State, sno...

TanGram

•11 months ago

25 Replies

How many PBC's

I was curious how many of you that have PBC ended up with liver cancers?

suz56

•1 year ago

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Newly diagnosed with PBC

Hello This is my first post - I was told I had markers for PBC way back in 2017 after a routine blood test flagged up elevated liver enzymes. I was referred...

Hello This is my first post - I was told I had markers for PBC way back in 2017 ...

Becks880

•1 year ago

16 Replies

Question about bloodclots & Anti- coagulants

Am stage 4, and have recently been told after my 6 month MRI that I have a large clot in the liver. A hematologist wants me on a blood thinners, that I have to...

Am stage 4, and have recently been told after my 6 month MRI that I have a large...

Muffymac2020

•1 year ago

14 Replies

urso / stomach issues

hi friends, I have been taking urso for a year. In the past month I have experienced stomach issues. Has anyone else taken urso for a while and then...

hi friends, I have been taking urso for a year. In the past month I have exper...

Samanthaann

•1 year ago

9 Replies

Living Liver Donation

Hello all. I was diagnosed in 2018 with PBC, I was 38 years old at the time and my children were ages 3, 7, and 9. Despite only having a MELD score of 8, I...

Hello all. I was diagnosed in 2018 with PBC, I was 38 years old at the time and ...

vballgoddess11

•1 year ago

3 Replies

OCALIVA

Hello! Anyone is taking OCALIVA in addition to Ursodiol to lower ALP? Does it work? Do you have any side-effects? How long have you been taking it? My ALP...

Hello! Anyone is taking OCALIVA in addition to Ursodiol to lower ALP? Does it...

iagra

•1 year ago

10 Replies

itch and bilirubin, long covid

1) since startin* urso I continue to have an itchy abdomen and scalp. My family dr does not think itch is related to PBC because my bilirubin is fine… I think...

1) since startin* urso I continue to have an itchy abdomen and scalp. My family ...

Artsy123

•1 year ago

17 Replies

Biopsy and Fibroscan

Hello I was diagnosed with PBC in May after they removed my gallbladder and took a liver biopsy. My questions is...the biopsy state I was Stage 1 but I...

Hello I was diagnosed with PBC in May after they removed my gallbladder and too...

suz56

•1 year ago

11 Replies

Newly diagnosed with PBC

Hi there! I just got my official diagnosis today and was started on Ursodiol. I have been feeling fatigued for about 13 years and no one could find a reason....

Hi there! I just got my official diagnosis today and was started on Ursodiol. ...

Pawsandchoc

•1 year ago

40 Replies

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PBCers Organization is a community dedicated to providing reliable primary biliary cholangitis (PBC) informati...

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The PBCers Organization is a Support System for Primary Biliary Cholangitis patients, family & friends. We offer PBC education, help, support, raising funds for research & advocate public awareness.

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