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PBCers Organization

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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

•9 days ago

2 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

•22 days ago

12 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

•24 days ago

2 Replies

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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

•1 month 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

•2 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

•2 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

•2 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

•3 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

•3 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

•3 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

•4 months ago

21 Replies

How many PBC's

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

suz56

•5 months 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

•5 months ago

15 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

•5 months ago

13 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

•5 months 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

•5 months 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

•6 months 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

•7 months 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

•7 months 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

•7 months ago

17 Replies

Supplements

All, What supplements do you take to help with overall liver health? Looking at Dose - has turmeric, dandelion powder, milk thistle, organic ginger powder....

All, What supplements do you take to help with overall liver health? Looking ...

Nittanylion

•8 months ago

8 Replies

MRI or MRE?

I am scheduled for an MRI of the liver. I've seen postings about MRE. Can anyone tell me what tests they have had and the difference between these two? Is...

I am scheduled for an MRI of the liver. I've seen postings about MRE. Can anyo...

Fluffysmom

•8 months ago

3 Replies

joint pain

Hello, I am recently diagnosed. AMA positive, ANA negative, family history of Psoriasis and Psoriatic arthritis, father was HLAb27 positive with Ankylosing...

Hello, I am recently diagnosed. AMA positive, ANA negative, family history of ...

AutumnWind

•9 months ago

5 Replies

Bloating stomach. Urso, or PBC ...or both?

Hi friends, I come here to post and read other's posts about this disease we are fighting. Changes, symptoms and comfort most of all. Thankyou. My worst...

Hi friends, I come here to post and read other's posts about this disease we are...

TanGram

•10 months ago

9 Replies

PBC or not PBC

Hi I’m new here. I was recently told that I tested positive for autoimmune and a Fibro Scan was done on my liver received a score of F4- cirrhosis. Non...

Hi I’m new here. I was recently told that I tested positive for autoimmune and ...

Roxanne9

•10 months ago

8 Replies

New here

I just got diagnosed 1 week ago. Was given no info. Been reading the internet finding it terrifying! Ugh! What to do next! Anyway I have PBC. On a scale of 0-4...

I just got diagnosed 1 week ago. Was given no info. Been reading the internet fi...

FreedomRider

•10 months ago

16 Replies

fibroscan

hi I got diagnosed in 2020 and had I fibroscan that came back f4. I know that means cirrhosis but are there more stages. The only symptoms I had was itching...

hi I got diagnosed in 2020 and had I fibroscan that came back f4. I know that m...

Daisy2609

•10 months ago

4 Replies

Cirrhosis or PBC ?

THE SHORT STORY My husband was recently diagnosed with F4 Cirrhosis. Began as NAFLD (not from drinking). Short story is that he's had high cholesterol maybe...

THE SHORT STORY My husband was recently diagnosed with F4 Cirrhosis. Began as N...

TruthWillSetUFree

•10 months ago

7 Replies

PBC causing high cholesterol?

My cholesterol level has gone up and I am wondering if it is due to my PBC. I know there are lots of causes of high cholesterol but I read in online research...

My cholesterol level has gone up and I am wondering if it is due to my PBC. I k...

Greenfern

•10 months ago

19 Replies

Tremors vibrations

Newly diagnosed..gallbladder removed 5 weeks ago due to pbc. I have a lots of tremors or like vibrations in my body...anyone have this that could coincide with...

Newly diagnosed..gallbladder removed 5 weeks ago due to pbc. I have a lots of tr...

suz56

•10 months ago

2 Replies

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Posts - PBCers Organization | HealthUnlocked

PBCers Organization

Possible Sjogren’s

Hair loss from Urso

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

Increase dosage of Lisinopril

Beet or beetroot juice

Curious about PBC symptoms and LFTs at Diagnosis

Lisinopril

Cholesterol

portland oregon

Triple Trouble and Tacrolimus

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

How many PBC's

Newly diagnosed with PBC

Question about bloodclots & Anti- coagulants

urso / stomach issues

Living Liver Donation

OCALIVA

itch and bilirubin, long covid

Biopsy and Fibroscan

Newly diagnosed with PBC

Supplements

MRI or MRE?

joint pain

Bloating stomach. Urso, or PBC ...or both?

PBC or not PBC

New here

fibroscan

Cirrhosis or PBC ?

PBC causing high cholesterol?

Tremors vibrations

Search posts

Pinned Posts

Latest poll

In what areas of your life have you experienced the most challenges as someone with PBC?

Topics

Archive