hi all. PBC diagnosed in 2014. Been on urso since then and been with a gastroenterologist that basically just followed my disease with blood tests. Fibroscans were not really a major thing when I was diagnosed and my doctor really never used them. He has retired and I’m going to a new practice that wants one. I’m nervous because this is the first imaging I’ve had other than some other incidental stuff at the ER since I’ve been diagnosed. My symptoms are about what they have been other than my ALP being up a little at my last blood draw, putting on some weight and just getting older everything is fairly stable. I’m scared all the sudden , one because they just called and said they wanted the scan, and because it’s easy to lull yourself into a sense of this isn’t really then something like this happens. I’m scared I’ve progressed a lot, I may have cancer, maybe I should have had a scan before this, all sorts of things. I’ve had thyroid cancer and lots of other stuff. Just needing a little encouragement.
fibroscan tomorrow : hi all. PBC diagnosed in... - PBC Foundation
fibroscan tomorrow
I haven’t had a FibroScan, but I did undergo a biopsy, which wasn’t a very pleasant experience. My doctor mentioned that FibroScan is just an imaging test. As long as your blood work is normal, there’s no need to worry. Remember, managing stress and avoiding unnecessary worry are essential for supporting your body’s healing process, especially with autoimmune conditions.
most likely they are just setting a baseline - I was diagnosed 18 months ago and had a baseline test instead of a biopsy as my levels are not wildly high. This tech is only becoming widely available now but my hepatologist wants one every few years to keep an eye out for changes.
I had all the initial diagnostic tests in 2014 biopsy etc. my alp never went to normal and is sitting in the high 200 to low 300 but has for awhile. Bilirubin and albumin are normal. Thanks for your response
I was also diagnosed with PBC along with autoimmune hepatitis. I had a fibroscan at the beginning of my assessments 18 months ago. Honestly it was absolutely fine. Similar to an ultrasound. It just helps the doctors get a complete picture of what they’re dealing with and whatever is happening it’s much better to know and get the best treatment than to ignore it and hope for the best. Personally I have found that every new piece of news they give me can be quite scary at first but let it sink in and give yourself time to process the information and eventually it becomes a new normal. It’s incredible what can be done for this disease and I know everyone is different but knowledge really is power. Wishing you all the best and try to keep positive thoughts as much as you can.
Hi I agree it’s probably just to set a baseline now that it’s becoming a more regularly used technique. Just like ultrasound although I got a feeling g of being punched by it - a bit disconcerting! But great to get feedback straight away from the nurse - I think a score if 7 or less is good.
Good luck💕
I was diagnosed in 2007, in 2024 at a long overdue hepatology appointment (because of COVID) I was asked if I would like a fibroscan. I know that these are part of the scanning procedures and was pleased to have, at long last, been offered one. Fortunately the appointment was very early in the morning and I had not had breakfast. The Fibroscan was carried out by a pleasant technician, I asked for the reading and was pleased with the numbers.
Many places do not ask for any preparation whilst others do. As Fibroscan is not invasive like the biopsy I feel this is one of the best scans which is now becoming more available.
I had a fibroscan yesterday my last one was 2019 so my consultant wanted to check on my progress of PBC I was first diagnosed in 2004 it’s nice to get results straight away mine were slightly worse than before but still only at stage 1 after all this time which at my age (76) I was satisfied with my last reading was 4 now I’m 7 so I’m awaiting a telephone consultation to discuss this reading (which the nurse said was very good) and she wasn’t concerned about. The blood results came through before I got back home all showing normal but there again I will discuss with the consultant. Easy to say but try not to worry and eat healthy food and exercise when you can ( hard I know when you feel tired ) be positive. Good luck it’s good to know where you are in the PBC journey
hi- I too have Pbc, I have yearly fibroscans. It’s a tool to help your doctor determine how you’re doing in addition to your labs. Please try not to worry - it’s a good thing as overtime your doctor has a baseline to gauge your diseases progression IF Any. Please do something for yourself, take a walk, read a good book, meditate anything that makes u feel good. All the best to you
Thank you everyone. When I was diagnosed back in 2014 I was borderline stage 2, but where I live it is so rare that my gastro only had one other patient with my disease, so the staging was really a guess by looking at my biopsy results. Liver specialists are around, but mostly in our larger cities which is a big drive. I am 55.5 now (age) and anticipate that mine is worse, but then again I could be wrong. My symptoms really, overall, aren't any worse than they were in 2014 and my Alk Phos is actually lower than it was at diagnosis. I'm probably overreacting, but tend to have anxiety on most things medical. I grew up with a mother who had almost everything you can think of and also had PBC. She died young (65) but not of this. Overall I deal with things pretty well. I've been obsessing over my root canal on Monday more than my liver, but this is taking precedence since the test is today. I will let you know what the results are. Thank you all!
Just to add, I was a "responder" to Urso, but I never went to normal. Always wondered how that effects my life expectancy
Update on my scan. Number was a little higher than I would have liked. Definitely got some fibrosis but no cirrhosis. Raising my dosage of URSO and going to do an MRI just to get a look at the ducts and the large bile ducts too, since my Alk Phos has been pretty high for awhile. Making sure no PSC overlap. Will keep you all posted
PBC 
Fibroscan
Fibroscan results
Ultrasound Vs Fibroscan
Fibroscan results
