Posts - PBC Foundation | HealthUnlocked

PBC Foundation

9,484 members•8,374 posts

All posts for July 2019

New PBC App

Delighted to let you know the newest new version is out. A few nice additions, some improvements, easier log in and registration. Be part of the community...

Delighted to let you know the newest new version is out. A few nice additions,...

PBCRobert

Partner•5 years ago

45 Replies

To many.

I went to dinner with intetcrpt. Lol still not alot of answers. I did tell the 3 others there about this site. I'm learning to live and let go. Lol

I went to dinner with intetcrpt. Lol still not alot of answers. I did tell the 3...

My-life

•5 years ago

4 Replies

Universal credit

Hello. Does anyone know anything about universal credit, I am currently working 16 hrs a week and I am worried they will make me look for more work. I get very...

Hello. Does anyone know anything about universal credit, I am currently working ...

SharonM69

•5 years ago

3 Replies

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Mycophenolate

Hi if there are any of you taking this medication for AIH PBC overlap could you tell me if it caused pain in the liver....I never had pain that was present all...

Hi if there are any of you taking this medication for AIH PBC overlap could you ...

Alley27

•5 years ago

3 Replies

Varices

Hi I've not posted for a while so here goes, I have PBC, I don't have any symptoms, I don't take any meds for it as I couldn't take the Urso,I don't even see a...

Hi I've not posted for a while so here goes, I have PBC, I don't have any sympto...

Jaycee

•5 years ago

15 Replies

Has anyone ever had a repeat fibroscan ?

Hi, just wondering if anyone has had a repeat fibroscan ? I got diagnosed in May with PBC due to elevated ALP(991) now 336 after 5 weeks on Urso. Initial...

Hi, just wondering if anyone has had a repeat fibroscan ? I got diagnosed in May...

Cody23

•5 years ago

14 Replies

Blood tests.

Blood tests..... not look tests.

7443jec

•5 years ago

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Serum Gamma GT

I was diagnosed with PBC following look tests during treatment for breast cancer. I have AMA of 1over 640, which apparently is the main diagnostic reading....

I was diagnosed with PBC following look tests during treatment for breast cancer...

7443jec

•5 years ago

20 Replies

Replies to my post

I hope I haven’t missed expressing my appreciation to all of you for your kind and supportive words. So if I missed someone, “Thank You”! 😊🌷

I hope I haven’t missed expressing my appreciation to all of you for your kind a...

gwillistexas

•5 years ago

7 Replies

SKIN DEEP...

Did anyone hear Radio 4 Book of the Week, last week? It featured The Remarkable Life of the Skin by Monty Lyman. I heard snippets while doing stuff around the...

Did anyone hear Radio 4 Book of the Week, last week? It featured The Remarkable ...

Hidden

•5 years ago

2 Replies

Normal labs but so what!?

Ok, I’ve been reading on pbc fb that some people are having completely normal labs but pbc is still progressing.... in fact this one is a bad stage four... she...

Ok, I’ve been reading on pbc fb that some people are having completely normal la...

Pamela4475

•5 years ago

35 Replies

ALP ⬆️

Not sure what happened, but February my ALP was 111. That was before an extremely stressful event in March. ALP jumped to 192 in my lab last week. I am hoping...

Not sure what happened, but February my ALP was 111. That was before an extremel...

gwillistexas

•5 years ago

34 Replies

Reply to you all

Hi all, Thanks for reaching out to me 😁 there have been quite a few messages of kindness and information, so I thought I'd say this to you all. The symptoms...

Hi all, Thanks for reaching out to me 😁 there have been quite a few messages of...

Nanabanana1

•5 years ago

2 Replies

Dizziness and falling over

Just today discovered a piece of research from 2010. It was looking into the prevalence of falls, dizzy spells and weakness in the legs in people with PBC....

Just today discovered a piece of research from 2010. It was looking into the pr...

Rosehip19

•5 years ago

18 Replies

New to group

Hi all. I'm newly diagnosed with PBC and have had symptoms for roughly 10 years, not realizing what was wrong. I am so tired, nauseated and very itchy all the...

Hi all. I'm newly diagnosed with PBC and have had symptoms for roughly 10 years,...

Nanabanana1

•5 years ago

4 Replies

3 months on Fenafibrate Tricor

I wrote 3 months ago that I was placed on Tricor, a cholesterol lowering drug that has been known to lower liver enzymes, as I was a non responder to Urso. My...

I wrote 3 months ago that I was placed on Tricor, a cholesterol lowering drug th...

brjl

•5 years ago

14 Replies

Did anyone else get energy/insomnia with Ocaliva?

I'm well aware of the negative side effects of Ocaliva, but has anyone else had a Prednisone-like energy boost? I don't know how else to describe it. I took it...

I'm well aware of the negative side effects of Ocaliva, but has anyone else had ...

IAmTheGlue

•5 years ago

7 Replies

Medication shortage?

Hi all. I live in London and my pharmacy is having problems getting my Urso. To make matters worse, after seeing my Gastro for my routine 4 monthly...

Hi all. I live in London and my pharmacy is having problems getting my Urso. To...

Sandymh

•5 years ago

40 Replies

Itch

I have recently moved to Spain and my itching has completely disappeared. This is so weird as it has been really bad for the past 12 months whilst living in...

I have recently moved to Spain and my itching has completely disappeared. This i...

Spanishnan

•5 years ago

12 Replies

Anyone familiar with getting an MRE?

I have a few questions about the MRE? I’m hoping someone with experience in this are might have some answers .Is it difficult insurance wise to get an MRE? Do...

I have a few questions about the MRE? I’m hoping someone with experience in this...

Ellyne

•5 years ago

9 Replies

Carbs

How many carbs are we suppose to take in daily..... avoid carbs sugar and alcohol I know but how many carbs is everybody consuming?

How many carbs are we suppose to take in daily..... avoid carbs sugar and alcoho...

Pamela4475

•5 years ago

31 Replies

Urso

Has anyone not had symptoms of PCB, then 3 weeks after starting medicine started with the itching ??

Has anyone not had symptoms of PCB, then 3 weeks after starting medicine started...

1155Cat

•5 years ago

13 Replies

Liver biopsy

Liver biopsy I had the liver biopsy yesterday . Now to await the results. I had no problem at all. The doctor only uses freezing at the point of needle...

Liver biopsy I had the liver biopsy yesterday . Now to await the results. I had...

Jeanb47

•5 years ago

4 Replies

What classifies someone as a responder vs a non responder to UDCA medication?

Is a responder someone who takes URSO for a specific amount of time and drops the ALP level within normal range? Is a non responder someone who's ALP levels...

Is a responder someone who takes URSO for a specific amount of time and drops th...

mmihhih

•5 years ago

5 Replies

Question

I keep hearing people say things about the itching ... how do I know if an itch is related to PBC ??? And how far into the PBC does the itching start ???

I keep hearing people say things about the itching ... how do I know if an itch...

1155Cat

•5 years ago

4 Replies

Medication

Could you please tell me what other medications are available for treatment AIH. My mercaptopurin is not working properly and tomorrow I have an emergency...

Could you please tell me what other medications are available for treatment AIH....

Alley27

•5 years ago

4 Replies

Stages of pbc

Hi, I have read posts saying they are at different stages can someone tell me please what stages there are and what this means plz hope this makes sense Tia

Hi, I have read posts saying they are at different stages can someone tell me pl...

Chickadee69

•5 years ago

3 Replies

ALP levels decreased then increased while on URSO 250 3x a day

Hi All, I am very concerned about a recent blood test showing my ALP levels elevating from 119 in February 2019 to 155 in July 2019. Perviously before taking...

Hi All, I am very concerned about a recent blood test showing my ALP levels ele...

mmihhih

•5 years ago

4 Replies

Red eye question

I am at the clinic because I woke up with a completely red blood coloured eye. Looks like a burst blood vessel but I’m getting it checked out. Is this...

I am at the clinic because I woke up with a completely red blood coloured eye. ...

Flowerwh

•5 years ago

3 Replies

Stopping Urso on trial

Morning everyone, hope your day is kind to you all. I’ve been on Urso since Feb when I was diagnosed with PBC. I’ve had issues and this is when the itching...

Morning everyone, hope your day is kind to you all. I’ve been on Urso since Feb ...

P13jne

•5 years ago

27 Replies

Posts - PBC Foundation | HealthUnlocked

PBC Foundation

All posts for July 2019

New PBC App

To many.

Universal credit

Mycophenolate

Varices

Has anyone ever had a repeat fibroscan ?

Blood tests.

Serum Gamma GT

Replies to my post

SKIN DEEP...

Normal labs but so what!?

ALP ⬆️

Reply to you all

Dizziness and falling over

New to group

3 months on Fenafibrate Tricor

Did anyone else get energy/insomnia with Ocaliva?

Medication shortage?

Itch

Anyone familiar with getting an MRE?

Carbs

Urso

Liver biopsy

What classifies someone as a responder vs a non responder to UDCA medication?

Question

Medication

Stages of pbc

ALP levels decreased then increased while on URSO 250 3x a day

Red eye question

Stopping Urso on trial

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