I had a private fibroscan today which was surprisingly normal and even healthy! CAP198 and Kpa5.5. I say surprised as my LFT's are off the scale high. Over the past month they have dropped by half but still high.
PCB was flagged over 7 years ago after a routine blood test and I have never had any symptoms the alarmingly high LFT's were only flagged after a routine blood test last month.
I started on Urso a couple of weeks ago and realise it can take a while to stablise if I do respond to the medication.
I probably won't see my Consultant until my yearly appointment until February should I be requesting a blood test in a couple of weeks to check all is ok?
I've read online that bloods should be monitored after a month of starting Urso. (I'm UK based)
Thanks in advance.
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Becks880
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Good to read your fibroscan has given you such good results. URSOdeoxycholic Acid, I understand, takes a while to get into the system and stablise . I have heard that bloods can be checked after 6 months and sometimes a year to make sure you are an URSO responder. Have you joined the PBC Foundation? They have a good web site with lots of helpful information including an easy to read version of the EASL guidelines for PBC. Once you have registered you can access the following page if you would like to.
Hi, I was diagnosed earlier this year after no symptoms and started Urso acid straight away. I had blood tests through my local GP every month and then saw the specialist again after 6 months, with all my blood test results. It indicated I was responding to the Urso acid. I am now having blood tests every 3 months and I see the specialist next week. I had a Fibroscan at the beginning, like yours, a good result. I’ve had two MRI scans, 6 months apart. I’m hoping I will be able to switch to 6 monthly blood tests as my blood results in the majority have come down significantly. The symptoms I have are fatigue, joint pain and dry mouth. The PBC foundation have been a great help, and a book everyone recommends from Amazon by Professor David Jones called PBC - The definitive guide….. It’s brilliant and informative accurately. Don't Google PBC and anyone you share your diagnosis with, tell them not to Google it either!
Thanks Cascade35. I have the book and agree, very informative.
It sounds as if you’ve had good follow up care, I’ll call my GP next week to see if a monthly blood test is required.
Did your dry mouth and joint pain come in once the Urso was working? I have no side effects as yet but only been on it 3 weeks. But I’ve heard, itching, joint pain dry mouth might come later.
I have felt more tired these past few months and sleeping for 9+ hours most nights and not feeling refreshed in the morning. Put it down to the winter months but maybe it is the PBC.
I see a liver consultant once a year, usually in Feb. I’m on a wait list for an MRI as my LFT are crazy high.
My anxiety is off the scale, having never had any health problems ever!
Hi there. When I was diagnosed this year my anxiety went through the roof and I went into denial as it was such a shock. The first month or two on Urso were really up and down, constipation, disrupted sleep, fatigue etc but luckily it all settled down. I had monthly blood tests by my GP fr 6 months, they have now switched it to 3 monthly. It’s really to check your numbers are coming down and you are responding. I was already on a Mediterranean diet, no meat, intermittent fasting on and off, and daily exercise, so no adjusting there and just continuing with it.
And thankfully, no itching as of all the symptoms I believe that’s the one that is intolerable.
I realise it’s early days, I was diagnosed in 2016 after a random blood test and high LFT’s. But they weren’t high enough to go on medication, so suppose I’ve been in denial a bit. This year I had a random blood test after a ‘sober October’ (I’m only a social drinker and stick to gov guidelines) my LFT had shot up GGT 700, ALP 567 and ALT 99! So was put on Urso immediately.
Thankfully they’re all 50% lower a month later but still high, so not sure why they shot up randomly? The urso wont have kicked in yet either. Not having any symptoms is a blessing but it can give you self doubt!
It’s a new long journey and I know I have to own it and do what I can to help my body cope!
A Christmas without a glass of fizz is going to be tough! 😞
I do think if you’ve been stressed, overdoing it or whatever, it can impact your blood results. But saying that, when I’ve been squeaky clean and living the healthiest life ever before tests, the results can randomly come back with one result being high.
I was diagnosed with osteoporosis 5/6 years ago and the six monthly blood test for that came back with the curve ball liver result.
I shall have a glass or two of fizz on Christmas Day as life is too short, and it’s important to celebrate a happy life while we have one!
I’m awaiting a bone scan, hope that’s going to be ok!
All my LFT have come down by half but the ALT has increased a bit last couple of weeks. I’ve paid for private blood tests. A bit obsessive but I just want to know!
Enjoy your fizz, agree life is too short - I may have one on Christmas Day too! 🙂
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To take or not to take Urso!!!!
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