Posts - PBC Foundation | HealthUnlocked

Administrator•3 months ago

hi there, I’m just wondering if anyone with PBC has experience with Terrys nails? I have it on 5 of my finger nails (2 on one hand and 3 on another). My liver...

Terrys nails

hi there, I’m just wondering if anyone with PBC has experience with Terrys nail...

FarahS

•3 months ago

Hi everyone, has anyone had ankle and leg swelling as a side effect of taking urso? Any suggestions on what to do to help with this? Thanks

Ankle and leg swelling on Urso

Hi everyone, has anyone had ankle and leg swelling as a side effect of taking ur...

MSJT

•3 months ago

Hi - and welcome! My name is Donna - I facilitate this support group for The PBC Foundation. First of all, take a breath. It’s ok. We all, myself included,...

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to all our newly diagnosed people

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

Administrator•3 months ago

Someone recently asked how often she should get a fibroscan or a MRE ( a more sophisticated scan). In Dr. Jones' book he says after getting one usually upon...

how often for a Fibroscan

Someone recently asked how often she should get a fibroscan or a MRE ( a more so...

Administrator•3 months ago

Has anybody tried gabapentin as a nerve blocker for constant large joint/muscle pain? Thinking it may be less harmful than anything else….

Gabapentin

Has anybody tried gabapentin as a nerve blocker for constant large joint/muscle ...

Gaspereaux

•3 months ago

Where can I find reliable information regarding cholesterol levels. I am in the US and cardio specialist who is also a lipid specialist is confused due to so...

Cholesterol

Where can I find reliable information regarding cholesterol levels. I am in th...

Lawyers

•3 months ago

5 Replies

time change

https://pbcfoundation.clickmeeting.com/cmt26 the Choose Me self care sessions from The PBC Foundation are now at 6pm UK time so more members can attend....

https://pbcfoundation.clickmeeting.com/cmt26 the Choose Me self care sess...

Administrator•3 months ago

Good morning - or afternoon everyone! It's Monday... a whole week ahead of you. I just want you to remember to take one day at a time over the week. Even an...

New week

Good morning - or afternoon everyone! It's Monday... a whole week ahead of you....

Administrator•3 months ago

I live in the US and do Shear-Wave Elastography ultrasound that checks liver fibrosis (scarring) and determines the PBC stage, every year. I did it for the...

Shear-Wave Elastography ultrasound

I live in the US and do Shear-Wave Elastography ultrasound that checks liver fib...

iagra

•3 months ago

8 Replies

Relationship between ALP and Direct Bilirubin tests and PBC stages

I wonder if there is a direct relationship between the ALP and Direct Bilirubin values and the PBC stage values (0-4). If ALP and Bilirubin go up over some...

I wonder if there is a direct relationship between the ALP and Direct Bilirubin ...

iagra

•3 months ago

I know some of you have already read the comments on the FB page. The subject of taking Urso, even though it causes so many side effects and ‘doesn’t keep me...

taking Urso

I know some of you have already read the comments on the FB page. The subject o...

Administrator•3 months ago

I received a note from my Dr. in My Chart that due to my liver enzymes still being elevated that I meet the criteria for a diagnosis of Pbc. I had made an...

Recently diagnosed

I received a note from my Dr. in My Chart that due to my liver enzymes still bei...

Zelda5

•3 months ago

13 Replies

cholestyramine information

https://my.clevelandclinic.org/health/drugs/19459-cholestyramine-powder-for-suspension I know how badly this tastes. I'm sure anyone taking it would welcome...

https://my.clevelandclinic.org/health/drugs/19459-cholestyramine-powder-for-susp...

I'm taking one sachet per day for PBC itching, as I have to take various tablets i can only drink the mixture first thing in morning. My question is how long...

Administrator•3 months ago

1 Reply

Colestyramine

I'm taking one sachet per day for PBC itching, as I have to take various tablets...

janetfolley

•3 months ago

We have a range of downloadable resources including our Compendium, Bear Facts magazine, leaflets, and lay guides to clinical guidelines. Our Compendium,...

more PBC Foundation services

We have a range of downloadable resources including our Compendium, Bear Facts m...

Administrator•3 months ago

https://my.clevelandclinic.org/health/drugs/19757-teriparatide-injection Hope this helps. This is an example of always using reputable sources for any...

Fosteo injections

https://my.clevelandclinic.org/health/drugs/19757-teriparatide-injection Hope...

Administrator•3 months ago

Good morning or afternoon - as the case may be. First of all, please don't think I'm being neglectful in reading or responding to your posts here. Living in...

what about you?

Good morning or afternoon - as the case may be. First of all, please don't thin...

Prof Jones book arrived today - although my 1st impulse was to sit down and read from cover to cover real life restricted me to a quick flick through. He...

Administrator•3 months ago

5 Replies

Take all Urso dose at once?

Prof Jones book arrived today - although my 1st impulse was to sit down and read...

DebatDG9

•3 months ago

The question of nutrition or a "PBC diet' comes up periodically, often from newly diagnosed patients. Maybe if you could just post here what dietary changes...

Nutrition suggestions

The question of nutrition or a "PBC diet' comes up periodically, often from newl...

https://drfalk.co.uk/wp-content/uploads/2023/08/EASL-Guidelines-Publication.pdf These are the Standard of Care Guidelines for the diagnosis and treatment of...

Administrator•3 months ago

20 Replies

guidelines for scans and testing

https://drfalk.co.uk/wp-content/uploads/2023/08/EASL-Guidelines-Publication.pdf ...

Someone asked if Dr. Jones' book mentioned the use of fenofibrates.... yes, it does in several places. This might be a good book to have if you are considering...

Administrator•3 months ago

1 Reply

Fenofibrates

Someone asked if Dr. Jones' book mentioned the use of fenofibrates.... yes, it d...

https://agcosprings.com/procedures/fibroscan/ Fibroscans are useful to measure the stiffness of your liver. A more comprehensive form of fibroscan is...

Administrator•3 months ago

9 Replies

Fibroscans

https://agcosprings.com/procedures/fibroscan/ Fibroscans are useful to measu...

Administrator•3 months ago

https://www.insitedigestive.com/2021/08/27/understanding-your-fibroscan-test-results/ There have been some questions lately about what fibroscan results...

Fibroscan results

https://www.insitedigestive.com/2021/08/27/understanding-your-fibroscan-test-res...

Administrator•3 months ago

Choose Me Tuesday Self-Care sessions which are now only on ClickMeeting so that patients can engage and open up in a private and protected space. They also...

wonderful service

Choose Me Tuesday Self-Care sessions which are now only on ClickMeeting so that ...

Administrator•3 months ago

I want to make everyone aware of an amazing book by the world reknowned PBC expert. I encourage everyone, especially those newly diagnosed, to purchase this...

Great purchase

I want to make everyone aware of an amazing book by the world reknowned PBC expe...

Administrator•3 months ago

Helpline number is 0131 556 6811 or Email info@pbcfoundation.org.uk Everyday this week I want to highlight one of the many services that The PBC...

PBC Helpline

Helpline number is 0131 556 6811 or Email info@pbcfoundation.org.uk Ever...

Administrator•3 months ago

I know there have been several posts about what might be helping with the dreaded itch. Sharing what has helped - or even what didn't - can prove beneficial...

Experiences

I know there have been several posts about what might be helping with the dreade...

Administrator•3 months ago

As I posted before, this was one of the most exciting parts of my attending The PBC Summit last May. So many pharmaceutical companies are working on...

Clinical trials

As I posted before, this was one of the most exciting parts of my attending The ...

Administrator•3 months ago