Hi All. Today I had confirmation I have PBC from liver consultant. He said no need for liver biopsy as bloods and symptoms are enough to diagnose. Although I had ultrasound scan done and was told all ok today he said that was to confirm no Cirrohsis however need a Fibroscan to see if any scarring or hardened liver. Little upset as thought after UC was all fine. He has put me on 1200mg per day of Ursodeoxycholic. Does anyone take that much it seems such a high dose? Worried about side effects as have a very busy job. Pleased I have a diagnosis now but worried if I’m honest. My Aunty has had this around 15 years and is on transplant list. He said he can’t confirm if it will progress fast or not. Thanks for any advice. Love this sight and seeing how others are and how they deal with things. Thank you.
PBC Diagnosed and Medication. - British Liver Trust
PBC Diagnosed and Medication.
Hi been diagnoseď 9 months and on 1500 of urso.goes with weight so yeh im on the chubby side. The mantra they like is if you respond to meds you will die with pbc not because of it. Transplant stops t 70 thay givès me 15 years!!! However with my other health issues it makes life hard.look for support groups on facebook. Im always grateful we are not in america as they have issues paying dor their treatment. Be positive
Hello yes I’m chubby too lol but lost a stone in last month or so as I’m now Diabetic. I guess as my Aunty is on transplant list I’m thinking this will happen but she has had it a long time. She lives in the states and is early 70’s so it seems they do it longer over there.Thanks for reply. Lovely to chat to people going through the same xx Take care x
Hi
I was diagnosed 4yrs ago, I take 1250 urso daily as I j initially didn’t respond well to lower dose. I hope you’re being seen by a hepatologist, they are far more knowledgeable than gastros, I live in Dorset but go to the Royal Free in London as there are no hepatologist in Dorset. PBC is ok to live with, I’ve had to make a few minor adjustments but nothing major. Best wishes 😊
Hi Bev, you could go to Derriford hospital in Plymouth. I go there from Somerset, you always see one of the consultant a Hepatologists. They are excellent, you are allocated a long appt time, and I've never waited very long.
They are linked with King's College Hosp, so now I'm listed for transplant I am seen in Plymouth but would go to King's for the transplant.
Best wishes and good health.
The urso is dependant of weight, for me I take 1000mg a day and I weigh 69kg. Divide 1000/69= 14.4 mg. per kg of weight that puts me in the correct range. . It may give you a chart in the patient information leaflet depending on what brand your taking, it will tell you the dosage for PBC. So you can check your taking the right dose if your worried. Always take URO with meals, I continue to spread mine into a morning and evening dose. I found I got indigestion and heartburn if I took it all at once.
I always feel for those newly diagnosed, I so remember feeling like my life was at an end, I went into some kind of bereavement for the life I thought I’d lost. I soon learned that not much was different. Ten years on I still live with PBC every day, I continue todo everything I want to do. I never gave up doing anything, ( except smoking and that was a bonus) I just need to pace myself better than I did. I did and still do suffer with fatigue from time to time but not as bad as I did before I started to exercise it does help and I eat a healthy diet, albeit a bit too high in added sugar..
The journey of life is a bumpy road with or without PBC, stay well and do lots of things you enjoy.
Well written Candy x
Thank you, I should have said healthy eating . 👋 Hope your well today.
Ha! Ha! On healthy eating comment!
I'm not to bad, aches eased a little!
My new Liver Trust T Shirt and fund raising pack arrived this morning for Sky Dive jump in October !!😁😁😁scary stuff.
Take care love Trish x
Thank you Candy I believe we chatted a while back. My appointment was originally October and got it brought forward I was so pleased. Fibroscan is next so will see what that says. Iv started on tablets today so pray they suit. Did you gain weight and loose your hair as that’s what it says could happen. Already chunky lol. Iv lost a stone in last 6 weeks since being told I’m Diabetic so going the right way don’t want to start putting it on.Glad your doing well would love to stay in touch xx
Just seen your reply, I gained a little weight when I first went on the medication about 3kg but I think most of that was from giving up smoking . I have a genetic condition that means I have very thin fine hair anyway, so difficult to tell what the real cause was.
I saw your new post this morning,, Now your on the medication your doctors will want to monitor your blood numbers closely, for your response to URSO, so that’s a good thing any changes get picked up quickly. I’am sure if there was any need to worry, they would have been in touch. However if your worried give your doctor a call it’s better than worrying, and stress isn’t good for anyone.
We have a new text system now for blood results at my GP surgery. I get a text to say there okay, or a text to say contact your GP for review, so i know straight away if I need to worry. Wish the hospital had the same system. Let us know how your fibroscan goes.
Ahh ok thank you Candy 😊 Iv tried to get in with Doctor but can’t 🤷♀️ Sounds good the text system. I have my Fibroscan tomorrow now soo pleased I don’t have to wait. Will need to see Doctor for bloods so will hopefully get a phonecall when she has heard back from Consultant but just can’t get in with her. Thanks again so much. Glad you are staying well. Lovely to chat to you as you have the same thing. Have a lovely day and will let you know xxxxx
Thanks all x ahh right I’m about 15st so that’s why high dose then. I’m ok trying to stay positive. Fatigue is hard some days and painful and tingling feet. Also have low B12 and now Diabetes also so all come at once x Feet could be to do with B12. Hope you all stay well. Thank you. Xx
Hi Dibby
I'm sorry to read you've just been diagnosed with PBC!
I'm currently under investigation for the same thing due to high blood results indicating this disease !
Over the last 18 months I've been eating really healthy and exercising alot which has improved my results dramatically and my weight has gone down quite alot.
I would recommend you try an healthy eating plan as I've heard from numerous people that you can reverse your diabetes if you try hard enough and if you achieve this, you ould then tick this off from your list of medical conditions plus it may help with your PBC symptoms too!
I wish you all the very best! Please keep us update on your progress!
Love Trish x
Hi Trish. Yes since Iv been told I’m Diabetic I’m now loosing weight and lost a stone in a month or so. Feel better for it too. Worried about weight gain with medication hair loss and Diarrhoea as I have Collitis also. Thanks for support. Fibroscan next so will see if that’s ok. All the best xx Sheree
Hi Sheree
Firstly that's a lot of weight to loose in a month! Please take care of yourself at the same time!
Would you let me know how your fibroscan goes ?
Take care sweetheart
Love Trish xxx
Hello well it’s just over a month but that’s really just cutting out sugar and bread.I try to eat healthily now as I work long shifts so it’s hard sometimes. I will do thank you Trish xxx
Hi Dibby, I wonder if having 1971 in your name if you are the same age as me? I was diagnosed in 2006, but had problems from 2000, I didn't respond to urso, so that has affected the progress of the illness. So much more research is being done now, and new medications are being used and developed.
I would recommend joining the PBC foundation.They have a group on health unlocked. They have the most up to date, and reliable information about PBC, so it's much better to get info from them rather than untrusted or old sites. You can also call them during weekday work hours, they will be able to offer you so much valuable information and support.
I was very overweight when I was diagnosed, my Dr suggested trying to lose weight to help my liver, I did as he suggested and I definitely felt better in myself. Certainly in terms of mental health, losing weight, being more active, made an amazing difference.
Generally people now live with PBC, and if they get a good response from urso can prevent the liver being damaged.
I would say getting referred to a specialist liver centre ( British liver Trust have a list of these hospitals), asking for an mri scan to confirm that the liver has no evidence of changes, and ensuring you know your own body, the blood test values - keeping Alk Phos under 200 is a good indication that you are responding to urso and preventing damage. You are entitled to have a copy of blood test results, just ask for the gp reception staff to print out a copy for you. The PBC have an app to keep track of symptoms, blood results etc.
I wish you well and hope you get as much info as you need to help you cope with this illness. But do remember most people die with PBC, not from it.
Best wishes x
Hello Wass yes I’m 48.I have joined the PBC foundation and is very helpful thank you. I asked Consultant if I need an MRI and he said no just a Fibroscan so I might mention it again as would much more detail wouldn’t it? I will ask for copy of my blood results too.Thank you and would like to stay in touch with everyone it really does help. Xxx Sheree
Hello all. Thanks again for your replies it really does help. Iv just found out my bloods are AST 78 and ALT 69. My AST has gone up from 56 3 months ago so is this a big change? Trying to get Fibroscan in ASAP. Reading online AST shouldn’t be higher than ALT soo confusing. Anyone know about this? Xxxx
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