Posts - PBC Foundation | HealthUnlocked

Administrator•4 months ago

from the PBC Foundation · If you missed it in your inbox we have important videos for you: Short version https://youtu.be/VE95QEAdo2I Long long...

Please Take Note.....

from the PBC Foundation · If you missed it in your inbox we have important ...

Administrator•4 months ago

Who would you like to just spend the day with - alive or dead?

Friday Fun Question

Prof David Jones talks us through the current situation around the future of obeticholic acid (OCA) in Europe and what this means. Ckick here for the video:...

Administrator•4 months ago

10 Replies

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Posted on The PBC Foundation FB page

Prof David Jones talks us through the current situation around the future of obe...

Administrator•4 months ago

Who or what brings you comfort on your 'not so good days'?

Thursday's Thoughts

Administrator•4 months ago

Autoimmune hepatitis (AIH) This is an autoimmune disease where the attack is on the hepatocytes (cells of the liver) rather than the biliary...

Wednesday's Word

Autoimmune hepatitis (AIH) This is an autoimmune disease where the attack is on...

Administrator•4 months ago

One of our members was wondering what moisturizing cream (or lotion) does anyone use who also has Scleroderma? By sharing what you've found helps - or...

what helps?

One of our members was wondering what moisturizing cream (or lotion) does anyone...

What piece of information do you wish someone had not told you - or you read - when first diagnosed?

Administrator•4 months ago

6 Replies

Tuesday's Tips

What piece of information do you wish someone had not told you - or you read - ...

about The PBC Foundation - Our telephone helpline is manned 24 hours a day, 365 days a year, however we would hope that non-urgent calls are within (or...

Administrator•4 months ago

17 Replies

Did you know?

about The PBC Foundation - Our telephone helpline is manned 24 hours a day, 365...

Administrator•4 months ago

Facts at-a-Glance Primary Biliary Cholangitis (PBC) affects mostly women, but more men are now being diagnosed. Primary Biliary Cholangitis (PBC) is a...

some PBC general pieces of information

Facts at-a-Glance Primary Biliary Cholangitis (PBC) affects mostly women, but m...

Administrator•4 months ago

https://www.niams.nih.gov/health-topics/scleroderma Just wanted to share some information about this auto immune disease. It is one of the most common ones...

Another auto immune disease

https://www.niams.nih.gov/health-topics/scleroderma Just wanted to share some...

Share with us how you've taken care of yourself this past week or so.. mentally and/or physically. I've tried to listen to my body when it needs...

Administrator•4 months ago

6 Replies

It's Monday 'Me'

Share with us how you've taken care of yourself this past week or so.. mentally ...

Administrator•4 months ago

Recently saw Rheumatologist for 1st time confident that I’d get Sjogren’s diagnosis but came away with more than I’d bargained for with Cutaneous scleroderma...

Cutaneous scleroderma ?with Lupus overlap?

Recently saw Rheumatologist for 1st time confident that I’d get Sjogren’s diagno...

DebatDG9

•4 months ago

9 Replies

PBC and PMR

PBC for past 18 years. Now diagnosed with PMR as well. Very small chance of getting both. Anyone else out here with both conditions?

PBC for past 18 years. Now diagnosed with PMR as well. Very small chance of gett...

Gioielli5

•4 months ago

18 Replies

please read and take action

In a post from the other day, I shared with you a statement from the PBC Foundation about this crisis with the availability of Ocaliva. Robert has asked...

In a post from the other day, I shared with you a statement from the PBC Foundat...

Administrator•4 months ago

I just tested positive for Covid. Ugh! Had it about 2 or 3 years ago too. The fatigue is the worst I've had in a long time. My husband tested positive on...

and so it begins...

I just tested positive for Covid. Ugh! Had it about 2 or 3 years ago too. The f...

https://www.nejm.org/doi/full/10.1056/NEJMoa2306185 The more we all learn about these drugs becoming available the better for us to understand our options -...

Administrator•4 months ago

18 Replies

Information on Elafibranor

https://www.nejm.org/doi/full/10.1056/NEJMoa2306185 The more we all learn abo...

Administrator•4 months ago

What was your favorite TV show as a child? or favorite cartoon character?

Friday Fun Question

Administrator•4 months ago

Hi, just spoke to the consultant and said I would let you know how it went. He basically said the positive ama m2 were nothing to be concerned about as my li...

Update on appointment with consultant

Hi, just spoke to the consultant and said I would let you know how it went. He b...

Ladysmith53

•4 months ago

Hi.. I have a question about diet and itch.. I take Colstyramine for the itch but realise that certain foods make the itch worse but have tried to whittle it...

PBc itch

Hi.. I have a question about diet and itch.. I take Colstyramine for the itch bu...

janetfolley

•4 months ago

hi all, Im 7 years post transplant.some bile duct problems, but a good recovery after the main operation. I unfortunately still have fatigue and others...

Seven years later.

hi all, Im 7 years post transplant.some bile duct problems, but a good recover...

Singlady

•4 months ago

3 Replies

PBC Foundation Update regarding Ocaliva

Obeticholic Acid in Europe 29/6/2024 We are issuing this guidance in response to the announcement made by the European Medicines Agency (EMA) on 28th June...

Obeticholic Acid in Europe 29/6/2024 We are issuing this guidance in response ...

Administrator•4 months ago

Here in the US it's our independence day from England. We celebrate with family gatherings, parades, and of course fireworks. I hope though that is also a day...

Thursday's Thoughts

Here in the US it's our independence day from England. We celebrate with family ...

Administrator•4 months ago

I can't even begin to imagine how this decision to no longer offer Ocaliva to European patients will impact their lives. Many patients take this because of...

Couldn't agree more..

I can't even begin to imagine how this decision to no longer offer Ocaliva to E...

Administrator•4 months ago

this was an email I received yesterday ..... Dear colleague I am writing to you today with some disappointing, and deeply concerning news. Today...

Bad News

this was an email I received yesterday ..... Dear colleague I am writing to ...

Hi - and welcome! My name is Donna - I facilitate this support group for The PBC Foundation - Health Unlocked. If you are new to your diagnosis, first of all,...

Administrator•4 months ago

15 Replies

to anyone new to the group.....

Hi - and welcome! My name is Donna - I facilitate this support group for The PB...

Administrator•4 months ago

encephalopathy This is a term used for a condition of toxic brain dysfunction. In those with PBC, it is known as hepatic encephalopathy. This...

Wednesday's Word

encephalopathy This is a term used for a condition of toxic brain dysfunction. ...

Administrator•4 months ago

from Dr. Jones's book The Definitive Guide for Patients With Primary Biliary Cholangitis.... One of the most common other auto immune...

Tuesday's Tips

from Dr. Jones's book The Definitive Guide for Patients With Primary Biliary Cho...

Administrator•4 months ago

Well, after our whirlwind weekend in airports and delayed flights, my husband just tested positive for Covid. Life just keeps giving us challenges, doesn't...

unexpected events

Well, after our whirlwind weekend in airports and delayed flights, my husband ju...

If at all possible, see a knowledgable hepatologist Only use trusted and reputable sources for information Don’t google unless the article is current and...

Administrator•4 months ago

8 Replies

Some 'tips' for new/already diagnosed members

If at all possible, see a knowledgable hepatologist Only use trusted and reputa...