Unsure about diagnosis of PBC - PBCers Organization

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Unsure about diagnosis of PBC

JustChillin68 profile image
6 Replies

Hi everyone, this is my first post as I've just had a diagnosis of possible PBC. My ALP has been hovering between 550-700 and was 640 on last bloods and ALT has been as high as 220 but now 150, since March this year. This was noticed on bloods I had done after hospital admission in March with bad asthma attack after a flu type bug I had for 2 months. I have no other symptoms, AMA negative, ultrasound fine, MRI fine, liver biopsy showed bile duct injury which report said possible PCB, PSB, autoimmune hepatitis or caused by amoxicillin earlier in year. Liver consultant has prescribed me Urso to try . I just feel a bit unsure about starting this without definite diagnosis. Has anybody had a similar set of results and diagnosed PBC ?

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JustChillin68 profile image
JustChillin68
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6 Replies
OrangeTulip profile image
OrangeTulip

Sorry to hear about your health challenges…the most important thing is your getting good medical care. I can’t really answer your question but I was told a positive AMA was needed for PBC. I’ve been on Urso for three years and like you I was unsure but it does help bring your numbers down which is important for your liver health. Good luck! Keep us posted.

JustChillin68 profile image
JustChillin68 in reply toOrangeTulip

Thanks for replying orangetulip , did you have any side effects after starting the urso ? I've read about gastric problems, weight gain and hair loss which all don't sound pleasant.

OrangeTulip profile image
OrangeTulip in reply toJustChillin68

The truth is that I experienced no major side effects being on Urso. In my case, my elevated liver enzymes indicated that my liver was not working optimally and Urso did help to reduce the enzyme levels. Like you I was worried but there are few alternatives. You can try Urso for three months, have blood work done and if you do suffer any side effects find another med. I think your liver specialist and doctor know what is required for you. I also modified my lifestyle choices: no alcohol, healthy eating, exercise etc. I hope this helps..

JustChillin68 profile image
JustChillin68 in reply toOrangeTulip

Do you have PBC ?

Becks880 profile image
Becks880

I have been on Urso for one year and have had no side effects at all. It has helped bring my LFT numbers down. My numbers were similar to yours. Which can only be a good thing?

I too was very apprehensive about taking urso too due to reading about side effects but I’ve had none! If for any reason it doesn’t agree with you, you can always try a different brand or something else. Just important to get your numbers down!

Good luck.

JustChillin68 profile image
JustChillin68 in reply toBecks880

Thanks, I've been on the urso for a couple of weeks now and have been fine apart from I had some itching on soles of feet for couple of days but maybe not related to the urso. I'm due to get bloods done mid October then consultant follow up end of October to see how bloods are. Hopefully mine will improve like yours did . Can I ask, did you have positive antibody test for PBC ?

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