I had my first Fibroscan on September 2017, it was 5,8 F0-F1.
September 2018, the result is 6,2.
Eventhough the result is still in F0-F1 there is an increase in fibrosis.
Are these results in average?
I know all PBCers are not the same, but what is your experience?
Thank you for your replies.
Hello,
I'm really sorry to hear this friend. Usually PBC is a slow progressive disease. There are a few people on this site who have experienced that same thing. For whatever reason, its moving along faster. Are you on URSO and have you been responding to it? What do your doctors say about this progression in one year? Get those questions answered by your healthcare professionals so they can come up with a different game plan for you. There is Ocaliva to consider too. Please keep us posted. Let us know what you find out. We all learn from eachother. ❤
Stella
Hi Stella:
Thank you for your answer. Yes, I am on URSO since April2017 and I think I am a good responder, even though my LFTs are not completely normal (quite near), they have improved. I have´nt had yet my doctor`s opinion because it was yesterday that I had the Fibroscan . Knowing that all of you have a lot of experience , I decided to ask.
Hoping all my best for you.
Rita
Thank you. I've been on URSO for 2 years. My numbers have fluctuated within the same ball park. Between 150 - 185 for my Alk-phose. They've never normalized. I'm not sure if that makes me a non responder. Maybe😔. l've never had a fibroscan. I have labs every 3 months. I have RA and dry eyes. I'm 59 but move around like I'm 80 somedays. 😔
Enough of my complaining. Its 80 degrees out. There's a nice breeze and I'm gonna enjoy it!! ❤❤
Mine is 19.4 or was last time i had one two years ago
Thank you for your comments. This is a reference for me. Hoping you are doing well.
hopefully I am still fine but seeing my hep in a couple of weeks so will know more than I have been on urso for 8 years and labs are fine but have learnt over time that blood results dont mean a lot as it's the urso making them look good, my score of 19.4 is regarded as fibrosis as my liver is still working as it should i was told. So I am just jogging along collecting other autoimmune conditions as i go along.
Just read your post. Was 19.4 your fibroscan score?
yes 19.4 kpa, she wrote it down on my paper when she did it, i still have it
Tks!
I don’t have an answer, but I am having a fibroscan next week and then we can compare notes. Similarly diagnosed March 2017, fibroscan 9/2017 was 4.4. I did not respond fully to urso and have been on ocaliva since 11/17 but lfts have been climbing recently. Look forward to hearing your doctors commentary and I’ll be sure to update you next week. Hang in there! Are you feeling well?
Yes, fortunately I feel well. There are some days that I feel without energy and body pains but other days I feel great ( most of the days).
Very early in the mornings I feel nauseas for a awhile, but immediately I feel OK ( I am guessing the reason is too many hours with my stomach empty). I have had these nausea before diagnosis and after URSO are more frequent.
Until now I would say the illness is not so bad, hoping it will continue this way.
I will have my doctor’s appointment 19 October, ( after LFT’s) , till then I would’nt have any feedback.
Please let us know how you get on
with your next appointment.
Healthy wishes.
Rita
When they do a fibroscan it only measures a small location, like when they do a biopsy. A difference that small might not mean anything.
I think you’ll hear disagreements on that. Although fibroscan is not 100% accurate it is chosen over biopsy by many drs. But having said that, the MRElastography is now preferred over fibroscan as it scans the liver with 99%accuracy.
The disadvantages of biopsy are that it is an invasive test, it requires the patient to be hospitalized for half a day, it is expensive, and it is associated with certain risks, such as pain and bleeding. (While bleeding due to liver biopsy is uncommon, it poses a significant risk when it occurs.) In addition, a liver biopsy samples only a very small piece of the liver, which can lead to incorrect staging if this sample is not represen tative of the rest of the liver. Thus, liver biopsy can lead to sampling error, which may result in either overstaging or understaging of fibrosis; sampling error may occur in up to 25-30% of liver biopsies. Another limitation of liver biopsy is that different pathologists can interpret the same sample differently, which can result in discrepancies in liver disease staging.
Fibroscan is a useful test in almost any patient in whom a clinician wishes to stage liver fibrosis. The main drawback of Fibroscan testing is that it cannot be performed in all patients. Technical limitations of the test preclude its use in patients who have ascites, individuals who are morbidly obese, and/or patients who have large amounts of chest wall fat. In these groups, either the test cannot be performed or the results are not reliable. Reliability and reproducibility have been well characterized for elastography with Fibroscan, and it is important to ensure that these technical requirements are achieved to make the scan results valid. Particularly, a valid result requires 8—10 measurements with a 60% success rate and an interquartile range less than 0.3.
Nezam H. Afdhal, MD
Director of Hepatology Beth Israel Deaconess Medical Center Professor of Medicine Harvard Medical School Boston, Massachusetts
👍
So well documented your info.
I do not have the details like how many shots they took in 2018 FS because I do not have the report . In 2017 they obtained 10 shots with more than 90% accuracy.
Thank for the explanation, it clarifies my doubt.
No worries. I am very detailed oriented. I know where to get info.
My doctor knows this & gives me copies of everything. I don’t even have to ask. 😊
Just get a copy of any tests that your medical team does. You can use it to reference any future scans.
Good advice. I have all my reports like you, but I have to request them thru the Hospital administration and it will take
a time.
It is good to know that you fellows are there, so well informed and ready to share.
Many thanks,
Rita
Happy to share!
Just had a MRE
Fibroscan results! 😀
Fibroscan results
Fibroscan results
