Posts - PBC Foundation | HealthUnlocked

PBC Foundation

9,388 members • 7,993 posts

All posts for October 2018

Ocaliva

Hi I have been on Ocaliva for 3 weeks and was wondering if anyone felt that it had caused them any low mood and depression. Really not liking this feeling at...

Hi I have been on Ocaliva for 3 weeks and was wondering if anyone felt that it h...

Jayne1863

•5 years ago

9 Replies

Back to undiagnosed!

I’m past frustration with doctors what will happened is going to happen anyway. After staying on Ursofalk for 17 years developed horrible alargies and stayed...

I’m past frustration with doctors what will happened is going to happen anyway. ...

Evaibrahim60

•5 years ago

7 Replies

Great lab results

Hi I've been here for a while but never posted anything. Today I want to share a great news - I just got my lab results and turns out that they have never been...

Hi I've been here for a while but never posted anything. Today I want to share a...

Domenia70

•5 years ago

38 Replies

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Diagnosed with cirrhosis at 52

Hello, I have been researching as I develop these strange new symptoms and found this site and posts very informative. I think I know what PBC is, I am so...

Hello, I have been researching as I develop these strange new symptoms and found...

BskHB

•5 years ago

5 Replies

What else can go wrong with me?

Well just found out that my consultant has gone on maternity leave (I wish her well) my new consultant is on annual leave (hope he has a lovely time) but I...

Well just found out that my consultant has gone on maternity leave (I wish her w...

123PAT

•5 years ago

8 Replies

My results and Liver biopsy work

Liver biopsy work Hi all So on Tuesday this week I have my liver biopsy I am worried that something will go wrong but most of all the results. My consultant...

Liver biopsy work Hi all So on Tuesday this week I have my liver biopsy I am wo...

Cherry69

•5 years ago

4 Replies

April 2018, update on OCA

https://medicalxpress.com/news/2018-04-long-term-obeticholic-acid-treatment-reversal.html#nRlv Just been reading this thought I’d post, there may be others...

https://medicalxpress.com/news/2018-04-long-term-obeticholic-acid-treatment-reve...

Hidden

•5 years ago

14 Replies

First appointment

Hi I was diagnosed with PBC 4 weeks ago. I have got my first hospital appointment in a few weeks and it's in the gastroenterology clinic. Is this usual and...

Hi I was diagnosed with PBC 4 weeks ago. I have got my first hospital appointmen...

BabyK

•5 years ago

8 Replies

High ALP and itching

After a year on Urso my ALP is still in the mid-500's (down from mid 700"s). Wondering if the occasional really itchy day is related to the high ALP level? I...

After a year on Urso my ALP is still in the mid-500's (down from mid 700"s). Wo...

kp1234

•6 years ago

4 Replies

Non-responders

Hi Just wondered how many of us are considered non-responders and are in the slightly over upper end of normal to around the 200 range of Alkaline Phosphatase...

Hi Just wondered how many of us are considered non-responders and are in the sli...

Twojer

•6 years ago

48 Replies

Reg Rifaximin (Xifaxan)

Has anyone ever been on this medication called 1 pill Rifaximin (Xifaxan) 550 mg daily

Has anyone ever been on this medication called 1 pill Rifaximin (Xifaxan) 550 mg...

Arlie

•6 years ago

28 Replies

Canadian pension plan disability

Any Canadians here receiving CPP disability retirement? I will be turning 60 next year and thinking of retiring. I’m wondering if anyone here has been...

Any Canadians here receiving CPP disability retirement? I will be turning 60 ne...

LeanCat

•6 years ago

12 Replies

Newbie with PBC and probable AIH overlap

I’m a complicated case positive for both AMA and ANA and negative for SMA. LFTs are high( AST,ALT *4 ULN and ALP *2 ULN). I haven’t any symptoms and discovered...

I’m a complicated case positive for both AMA and ANA and negative for SMA. LFTs ...

Sona_akb

•6 years ago

8 Replies

Pbc costs:treatment&tests&evaluation

hello friends. I saw that the treatment in some countries is very expensive and also that all test procedures must be done by appointment after some time. I...

hello friends. I saw that the treatment in some countries is very expensive and ...

Andrei

•6 years ago

11 Replies

Rogue Molecules that Trigger Autoimmunity

I follow research on AI disease in general because while PBC is rare AI, diseases like MS and Lupus have so many more patients (2.3Million, 5M) lots of...

I follow research on AI disease in general because while PBC is rare AI, disease...

EileenUSA

•6 years ago

2 Replies

Memories

I’m new here, signed in ages ago, but my memory is so bad I forgot my password, had to change it this morning BUT remembered to write it down. I have a book,...

I’m new here, signed in ages ago, but my memory is so bad I forgot my password, ...

Felixmyboy1

•6 years ago

2 Replies

Pbc trigger and possible treatment

good morning. in the past days i am reading about the activation of out killer T cells (natural killer T cells -NKT) witch i understand that are responsible...

good morning. in the past days i am reading about the activation of out killer ...

Andrei

•6 years ago

11 Replies

Aih/pbc

Any body got problems with vision

janine541

•6 years ago

8 Replies

Aperiomics

REQUEST KITS CLINICIAN PORTAL Aperiomics Logo Research Your Sequencing and Bioinformatic Partner Next-generation sequencing and bioinformatic services can be...

REQUEST KITS CLINICIAN PORTAL Aperiomics Logo Research Your Sequencing and Bioin...

SunnyXXOO

•6 years ago

10 Replies

I'm venting...... 🙁

Hi everyone, I'm gonna apologize right now cause I'm venting. 😣 You don't have to read it. And thank you to the ones who stick it out. I'm sure my story is a...

Hi everyone, I'm gonna apologize right now cause I'm venting. 😣 You don't have ...

Ktltel

•6 years ago

68 Replies

Itching

This is trivial, but I’m curious how many do not have the dreaded itch and/or fatigue? 🤔

This is trivial, but I’m curious how many do not have the dreaded itch and/or fa...

gwillistexas

•6 years ago

49 Replies

Dr Burkston’s info

Thought someone may use information

SunnyXXOO

•6 years ago

19 Replies

This is a repost from an anonymous patient on another liver ailment forum. Never heard of getting my MELD score.

Hi all, read the post below from an anonymous patient on another forum. I've never heard of a MELD score. Anyone else had one done? Should I be asking my GI...

Hi all, read the post below from an anonymous patient on another forum. I've nev...

Ktltel

•6 years ago

22 Replies

Back fro New Mexico

Just got in form seeing Dr Burt Berkson, Las Cruses, New Mexico. Good visit, feeling good. Burt gave me a test to pin point what the issue is, it’s sort of...

Just got in form seeing Dr Burt Berkson, Las Cruses, New Mexico. Good visit, fee...

SunnyXXOO

•6 years ago

14 Replies

Ultrasound Results... what's going on?

Hey friends, Had the US today. Nurse practitioner called me late in the day with findings. Compared to my last US taken 4 months ago they found nothing...

Hey friends, Had the US today. Nurse practitioner called me late in the day wit...

Ktltel

•6 years ago

18 Replies

Fibro scans

Anyone that has had a fibroscan , do u think they tell the truth. Had one said i was 0 to 1. When i was a 2 with my liver biopsy in 2015. My levels are in...

Anyone that has had a fibroscan , do u think they tell the truth. Had one said i...

KevinHall10_

•6 years ago

35 Replies

Itching in hands and feet only - anyone else have this?

Hi folks, I was diagnosed with PBC some years ago now at only 29. I am on urso, my liver seems to be doing really well and I'm generally reasonably healhy...

Hi folks, I was diagnosed with PBC some years ago now at only 29. I am on urso, ...

RockPrincess

•6 years ago

4 Replies

Copper toxicity

Hi I have just been told I have copper toxicity. My dr has put me on a regime to detox it's the Walsh Protocol and consists of high doses of zinc selenium b....

Hi I have just been told I have copper toxicity. My dr has put me on a regime to...

Gwelos

•6 years ago

4 Replies

Newly diagnosed - Urso & side effects.

Hi all I joined in June after my GP suspected PBC from my blood test results. Fast forward 4 months after consultant appointments, a liver biopsy and a...

Hi all I joined in June after my GP suspected PBC from my blood test results. F...

Rachie34

•6 years ago

2 Replies

Mayo clinic

Has anyone gone to Mayo Clinic in Rochester, MN, USA for diagnosis of PBC and then followed up. I have PBC for past 7 years now. I take Urso regularly and see...

Has anyone gone to Mayo Clinic in Rochester, MN, USA for diagnosis of PBC and th...

Mg40

•6 years ago

14 Replies

Posts - PBC Foundation | HealthUnlocked

PBC Foundation

All posts for October 2018

Ocaliva

Back to undiagnosed!

Great lab results

Diagnosed with cirrhosis at 52

What else can go wrong with me?

My results and Liver biopsy work

April 2018, update on OCA

First appointment

High ALP and itching

Non-responders

Reg Rifaximin (Xifaxan)

Canadian pension plan disability

Newbie with PBC and probable AIH overlap

Pbc costs:treatment&tests&evaluation

Rogue Molecules that Trigger Autoimmunity

Memories

Pbc trigger and possible treatment

Aih/pbc

Aperiomics

I'm venting...... 🙁

Itching

Dr Burkston’s info

This is a repost from an anonymous patient on another liver ailment forum. Never heard of getting my MELD score.

Back fro New Mexico

Ultrasound Results... what's going on?

Fibro scans

Itching in hands and feet only - anyone else have this?

Copper toxicity

Newly diagnosed - Urso & side effects.

Mayo clinic

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