Hi, I hope everyone is doing well for wherever they find themselves in their PBC journey❤.
Last year in November I had my first Elastography test. My Kpa score was 3.14kpa. My hepatologist didnt seem concerned. My most recent blood tests are about the same, everything normal except my fluctuating Alkaline phosphatase and it's 158 right now. It fluctuates between 150 and 183. I have labs every 3 months. My Ultrasound was normal.
My latest MRE was done December 17th this year. On my 31st wedding anniversary lol...it's one way to have fun right? It's the only day I could get in after a bad snow.
Anyway, just got my results this afternoon. My new score is 3.84kpa. So in one year I went from 3.14 to 3.84. I'm not sure what that means except I do realize it's worse. How worse?? I don't know. I'm a stage 2-3 fibrosis according to this report. My albumin is 4.0 and my Bilirubin was normal. Those are the guys to watch right? Albumin and Bilirubin. My fatigue has actually got better since I started using a CPAP machine. As it turned out, I had sleep apnea. I still have fatigue but not as debilitating as before.
I'm only taking URSO. Guess it's not slowing fibrosis. I dont know. OCA was a wash as in 30 days plus on it my ALT and AST went in the red. So, my hepatologist took me off.
Well, that's it. Any comments about how you're doing, insights, wisdom, or good jokes welcomed ❤.
*For any that wish to see it..this is the MRE (Magnetic Resonance Elastography) scoring chart that came with my report. ((I'm from U.S.))
REFERENCE RANGES in kPa for MRE:
Less than 2.5 equals normal
2.5 to 2.9 = normal or inflammation
2.9 to 3.5 = Stage 1-2
3.5 to 4.0 = Stage 2-3
4.0 to 5.0 = Stage 3-4
Greater than 5.0 = Stage 4
Stella
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Hey Stella! So good to hear from you. Been a while. Happy you are doing well other than your MRE score. Your ALP is much better than mine. Mine has gone back up. Hepatologist is doing another CMP In February. After the break up, i had quite a few numbers in the red zone. I not happy. 🙁My bilirubin is normal thank goodness. So I’m not sure ocaliva is still doing me right, lol! We’ll see what hepatologist says after labs. Stay in touch with us. Hope you and your family have a wonderful Christmas 🎄
Thank you. Please take good care of yourself. I'm hoping someone on this forum can tell me what a 70 point jump in "one year" means. I realize it means my PBC is progressing, but, I already knew that. Im just wondering if that's normal or am I progressing fast. My doctors appt. is the 26th. I'm sure he'll fill me in.
I was told I'm a non responder to URSO a year ago. They still keep me on it. I'm just wondering if anyone else is in my situation. I feel pretty good, but then liver disease is sort of a silent enemy for the most part isnt it?
Take care, keep me posted on how you are doing. Be safe during the holiday.
On my report, F0 < 5.48 kpa, so, you'd fall into the stage 0, no fibrosis. But, your report says that you are stage 2. Looks like different labs use different stage ranges.
Hello, thank you for responding. I wonder if MRE scores are different than Fibroscan scores. KiloPascals are the same but maybe scoring is different. My report states Stage 2-3. But 4.0 is the beginning of stage 4 and my score was 3.84. So I'm very near Stage 4 I think.
Mine is not fibroscan, it is shear-wave elastography ultrasound. It's a different test from fibroscan. I don't know what MRE is. Are you in the US? I'm in the US, WA state.
Yes. I'm in Kansas. Magnetic Resonance Elastography or MRE is a type of MRI scan but uses different software presentations to evaluate liver stiffness. It's 97% accurate and if a patient is overweight, the MRE is "more" accurate than a fibroscan.
So, it looks like there are three tests (besides biopsy) you can have for liver stiffness: MRE, fibroscan and shearwave elastography ultrasound (which is also considered more accurate than fibroscan). I've never had fibroscan. And was never offered MRE, didn't even know about it. Thanks for your info. Good luck!
I had a MRE about a year ago and my kPa was 2.8. The results report stated this equated to minimal to no hepatic fibrosis (F0-F1). I've often wondered about the scales they use. They just don't seem consistent. I'll have my yearly MRE in a few weeks and am anxious to know how I'm doing. Best of luck and I'm glad you are feeling well😊💕
Not sure bout your jump fibroscan score, mine at the last check was 11.4 but it as been 16.3 seems to fluctuate a lot. My bilirubin is 12 and albumin 38. Both changed since they stopped the seledapar trial. Been having bloods done every 2 weeks until they sort things out. Hope you keeping well and looks beautiful where you are. The weather here is terrible with really bad rainfall. Xx
Have they tried bezafibrate with you. I've been reading about them. Some are lowering their numbers on them. I'm going to talk to my hepatologist about them on the 26th.
Yes, I'm still upset about Seladelpar. I pray they come up with something they can use out of it. I'm not up with the current research. Good to hear from you. I hope despite everything you are feeling pretty good.
Yes I’m still not over the disappointment. Went to see the trial nurse yesterday but they still have no news from drug company, they just wanted some information on where on my body I was itching 2 years ago 🤔. Don’t know what they going to do with me now.
Hang on a minute. Fibroscan score and MRE are totally different measures. No comparison. This prompts me to say that discussion regulator could helpfully put out a conversion/ comparison table that we could all print out and keep on one side when in these discussions. All blood test units are different in UK and USA so please please someone do something! We must compare apples with apples.
Thank you for letting me know that. So fibroscan scoring in KiloPascals is different in U.S. than U.K.?
And for MRE tests which also measure in KiloPascals, it's probably different too then. I can Google the scoring KiloPascals graph. But my report already stated my staging results so, I didn't Google it.
No sorry. My Fibroscan was 26 but mre 6.3/4.3 - same units but a different signal measure. But I meant in terms of units blood tests. So we in UK generally have milligrams or microgram per millions but in usa you often have mg per decalitre or suchlike. It IS A MINEFIELD AND NEEDS A HELPFUL set of tables to show normal ranges in different units and other comparisons and conversions.
Yes, it's a bit confusing. I should preface when I post that I am from U.S.
I didnt realize those measurements were scored differently in the U.K. Sorry if I confused anyone. I will be asking my doctor about what my scores mean in terms of progression on the 26th.
Your jump in number is actually 0.7, not 70 so that reads a little better, you would think that KPa’s would be a universal measurement. However it shows from the posts that this is not the case,. . It’s good that your bilirubin and albumin are in the normal range, and your ALP is stable. INR is not routinely done in the UK as a one to watch, I think the other numbers are what informs your doctors.
I’am considered a non responder to URSO now , why after so long remains the mystery , but was put on Bezafibrate 4 months ago after deciding against OCA for now. For the first time in 9 years my ALP results were normal. I’am still taking the URSO, as it still has its benefits. I’am due a second test after Christmas so fingers crossed 🤞
I think you can get fibrates in the US, as fenofibrate. Is it worth discussing this with your doctors as you were intolerant of OCA.
Such a lovely picture, I’d love some snow right now, all we have across most of the UK , is more rain it never seems to stop. Take care xx
Thanks for your reply. I will definitely talk to my doctor about fenofibrates for sure. Thanks so much for all the info. I'm glad I had the baseline MRE last year. With it up 0.7 this year I can watch what happens next year with the MRE while taking fenofibrates "if" he decides to put me on them. They are lowering lab numbers, hopefully they will slow fibrosis as well.
Yes, It was nerve wracking but, I really wanted a true "baseline" with my PBC. This way I could gauge what is truly working and what is superficially just stabilizeing the numbers. Do what your comfortable with. Keep us posted how you're doing.
Hi Stella I too am a non responder to urso. 6 months ago I was put on bezafibrate and my ALP and bilirubin are nearly normal. I would see if they could put you on it as quite a few people are having success with it.
Hi Stella, Good to hear from you, tho' sorry to hear about the increases.
My PBC Specialist told me he sets great store by the GGT levels, and prior to him mentioning this mine were not included in my annual tests. NB: I don't have PBC, as yet, just AMAs - tho' my Prof doesn't think I'll get it as I'm now nearly mid-60s.
I hope it all calms down. Have they tried you on the other medication - sorry, not being so actively involved now, I forget the name - the one that has been in use the last few years, it's usually given with urso, to non-responders. Doh! My memory is awful!
Take care and have a wonderful Yule and New Year. and I hope all goes well with all tests … and all life!
My ggt was abnormal when I was diagnosed pre urso. My hep doesn't test that as I don’t think it is specific to the liver. But I asked him about it & he ordered the test since I brought it up early this year. It went back to normal. Am thinking urso helped it.
Thank you. I will definitely ask about GGT test. I'm so glad you are responding to URSO. I'm with you...here's hoping for a break through in PBC treatment this 2020!! ❤
Scratched that about ggt not being specific to liver. I think I didn’t remember exactly what he said about why it is not part of the labs.
My alk phos fluctuates & now is a bit higher than when I first took urso. My hep doesn't seem too concerned. He said alk phos can be also elevated due to fatty liver. He gave me a referral for a sonogram. Have to schedule for Jan.
Interested in your reply. My recent figures were 6.3 and 4.3 left and right lobes, consistent with cirrhosis F2/F3. Unlike you I was an URSO nonresponder and put myself on bezafibrate 10 years ago. This brought Alk phos down within range but the others (ALT, AST etc) have always been over the top.
I asked recently and apparently don't qualify for OCA! This must be due to criterion of Alk phos. Catch 22 - if I was not on bezafibrate Alk phos would be over the top and Iwould qualify!
In my opinion your result looks pretty good. You have heard me say this before - look at trends - your position might not have really worsened - it may just be natural variability and errors within the system - what you ate that day, which bit of liver was sampled, errors of the test etc.
Intrigued by your increase in AST, ALT with OCA - so this clearly does not suit everyone. Very best wishes, William
Thank you for your reply. I will ask my hep about those variables. Takecare and keep us posted if you start OCA. I think it has helped way more than not. I'm just one of those it didn't for now.
Hi Stella, I am a bit late joining the thread and I think you have had some really good input from everyone. Perhaps I can add that levels are known to fluctuate. We rarely see snow in my part of the world so your picture to my mind is wonderful. Wishing you and your husband the compliments of the season and every best wish for 2020.
🤗🤗🤗scratch the comment about ggt not specific to liver. I googled & that is not true. I dont remember what he told me about why ggt is not part of the routine blood work.
raised ggt confirms that a raised alp is caused by liver, as alp is not liver specific. Therefore once they know the cause of your liver disease its not so relevant. Blood tests are only useful if they are going to influence management. The PBC foundation, citing the EASL guidelines on diagnosis and treatment of PBC state that a alp under 200 (regardless of ups and downs) shows affective response from urso.
Other bloods show more progressive disease once the liver becomes cirrhotic, such as albumin, billirubin. To calculate Meld or ukeld score alp, ggt etc are not even used. Just albumin, billirubin, creatinine, inr (and for ukeld sodium). So if none of these bloods are out of range, and alp responds to urso being under 200, statistics show you are likely to live a normal life expectancy, without need for transplant.
Fibroscan, mre etc can be affected by a number of things, had you eaten carbs before the second test, have you got a fatty liver. You may find the next one goes down, not up. The ELF test is a blood test which is considered more accurate (not affected by weight, fatty liver, inflammation etc).
I've said this before, but I do think in the states you guys are having way too many tests which is just increasing your anxiety levels, not helping. I think it's best to go by what your body is telling you, get bloods 6 monthly /yearly if responding to urso.
Nothing happens overnight with this illness. I've been diagnosed 14 years, but pretty sure I've had it 20.im now on the transplant list (had 3 failed calls). I didn't respond to urso, my alp was high and has gradually (over years) gone up to 800-1100. However its only been the last 2 years my billirubin has gone up and albumin gone down. Now I'm having monthly bloods as they inform the transplant benefit score which determines your match to a donor, and priority on the list.
Try and enjoy being well, believe me you'll know when you're not!!
Thank you. I appreciate your input. I've been slow on the uptake and feel so stupid. I never put together fatty liver issues with PBC issues. My doctor has totally downplayed the fatty liver issues and solely concentrated on my PBC, so I did too. We never even discuss NAFLD. I was told 3 years ago that I had it and it was considered mild. I was diagnosed with PBC at the same time. All 3 of my doctors concentrated on the PBC. Diet too, but not nearly as strongly.
I'm realizing now that my MRE score increase could "probably" be due to fatty liver and not my PBC (maybe). And, you're right. My PBC numbers actually look decent.
For 3 years the only thing elevated has been my Alk-phos and it's always been under 200. I always thought I was a non-responder to URSO if my alkaline phosphatase didn't normalize after 2 years. Even my hepatologist suggested that. He put me on OCA earlier this year. When that didn't help we were back to square one. But again concentrating on PBC instead of fatty liver. It's just a guess but again, just maybe this jump in my MRE is "fatty liver" related fibrosis. I realize that this is still serious. I'm always struggling with my diet. This past year my diet has mostly been non-existent. This is kind of a light bulb moment for me. None of my doctors...my GP, my GI, and my hepatologist have talked to me about fatty liver and just how serious it is. Especially with having PBC as well.
I was reading all about NAFLD yesterday. That, along with your post made me realize some things. Still, my doctors aren't solely at fault at all. I've been feeling basically normal outside of the usual PBC symptoms...slight fatigue and dry eyes, some muscle aches. And, I wasn't watching my diet. So, between that and giving in to the fatigue...I just haven't been exercising either. That's a deadly combination! Here I am, increased MRE score.
Wass71, thank you for sharing everything you did. It made me realize a few more things that helped me put the puzzle together. So many posts on here have! Thanks to everyone really. But your post was a wake up call.
Keeping you and all of us in prayers. Please let us know if and when you get your transplant. I pray everything goes well and that on the day, your surgeon and staff are brilliant!! All I can think of are Shannon's (Shulsey's) words..Stay Strong❣. That's what your post did for me. Thank you.
Stella ❤
*Sorry for the long light bulb moment post....maybe some part of it will help someone else.
Hey Stella! Although I have never had an MRE I don't think they have very accurate ways to measure what's going on imside of our livers. Last spring my doctor was concerned my bile duct was getting smaller. They wanted to do a MRI. Because of insurance issues I put it off until Sept. That time they said my bile duct was getting larger. They decided to do an endoscopic ultrasound. The docor said she had to measure it 2 different ways. They just don't have very accurate ways to measure . It turned out my bile duct is fine , only slightly expanded. No big deal. I bet if you went in f or another fibroscan next month you would have a different score still.
I am (so far) an Urso responder but my ALP has never been normal and my billirubin is almost always elevated. Albumin is okay. Diagnosed 2 years ago at stage 3.
Thank you Pam. I value all input. Yes, I need to take that into consideration for sure. I'm so glad you are holding steady. Takecare and please keep us updated on how you are doing.
I think our labs have different results. Over in the uk I think we drop the zero. Mine are bilirubin 15 and albumin 38. Since stopping trial bilirubin gone up from 9 to 15
My doc says normal fibroscan is 2-7 with average normal 5.3.... I don’t know if eladtoscan is the same but I’m 3.5 and no sign of fibrosis.... what was your CAP measurements
I'm in stage 2-3 fibrosis with an MR- elastography score of 3.83kpa. So it must gauge the scores differently. When I was 3.14kpa last year, they said I was stage 1-2 fibrosis.
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Question about elastograph ultrasound result
