2nd MRE Score....: Hi, I hope everyone is... - PBC Foundation

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2nd MRE Score....

Ktltel profile image
57 Replies

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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Ktltel profile image
Ktltel
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57 Replies
VeeWat profile image
VeeWat

I alway heard the ones that are liver ‘function’ tests are albumin, direct bilirubin and INR

Ktltel profile image
Ktltel in reply to VeeWat

Thank you. I forgot about INR. They never test me for that and my hepatologist doesnt even mention it. I'll ask him about that next week.

Stella❤

gwillistexas profile image
gwillistexas

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 🎄

Gail

Ktltel profile image
Ktltel in reply to gwillistexas

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.

Stella

gwillistexas profile image
gwillistexas in reply to Ktltel

Thank you. Please let us know what your dr says. 😊

Ktltel profile image
Ktltel in reply to gwillistexas

I sure will. Enjoy your Saturday ❤

gwillistexas profile image
gwillistexas in reply to Ktltel

You too!🌞

iagra profile image
iagra

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.

Ktltel profile image
Ktltel in reply to iagra

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.

Stella❤

iagra profile image
iagra in reply to Ktltel

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.

Ktltel profile image
Ktltel in reply to iagra

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.

Stella❤

iagra profile image
iagra in reply to Ktltel

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!

HealthyChik profile image
HealthyChik

Hi Stella

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😊💕

Ktltel profile image
Ktltel in reply to HealthyChik

I'll ask my hepatologist about that. I was told, and read, that MRE was more reliable than a fibroscan. Please let us know how you are doing.

Thank you.❤

kimphoebe profile image
kimphoebe

Hi Stella

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

Ktltel profile image
Ktltel in reply to kimphoebe

Hello,

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.

❤Stella

kimphoebe profile image
kimphoebe in reply to Ktltel

Hi Stella

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.

zinchunter profile image
zinchunter in reply to kimphoebe

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.

kimphoebe profile image
kimphoebe in reply to zinchunter

Yes I do know that, just saying what my experience is

Ktltel profile image
Ktltel in reply to zinchunter

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.

Thank you again.

billhunter profile image
billhunter in reply to Ktltel

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.

billhunter profile image
billhunter in reply to billhunter

Sorry i meant millimole not millions.

Ktltel profile image
Ktltel in reply to billhunter

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.

Stella

Candy12 profile image
Candy12

Hello Stella,

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

Ktltel profile image
Ktltel in reply to Candy12

I typed this whole thing out and lost it. Ugh!!

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.

Please keep us informed how your tests go.

❤Stella

Sona_akb profile image
Sona_akb

Dear Stella! So good to hear from you.I'm not sure but I think little rise is not that much significant and may be related to measurement false.

I'm currently frightened to do this test I don't want to know the result because every single test came back abnormal in my case LOL

Ktltel profile image
Ktltel in reply to Sona_akb

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.

Thank you for your reply.

❤Stella

Wocket profile image
Wocket

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.

Ballymahon2 profile image
Ballymahon2

Love the photo hope you have a lovely christmas and new year

GrittyReads profile image
GrittyReads

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!

Gritty

Ktltel profile image
Ktltel in reply to GrittyReads

Thank you. Yes, I was on OCA. Increased my numbers so he took me off.

I've heard GGT mentioned before. I'll ask my hep about having that done. I'm glad your doing well. Takecare and keep us posted how you are doing.

❤Stella

ninjagirlwebb profile image
ninjagirlwebb in reply to Ktltel

Stella,

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.

Hope you get all your questions answered.

Happy Holidays & a as healthy as can be 2020!!!

😊

Ktltel profile image
Ktltel in reply to ninjagirlwebb

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!! ❤

I'll keep you posted.

Stella

ninjagirlwebb profile image
ninjagirlwebb in reply to Ktltel

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.

Sona_akb profile image
Sona_akb in reply to ninjagirlwebb

my GGT was 5 times upper than normal prior to urso. now after one year of treatment, my GGT is normal but ALP slightly upper than normal

zinchunter profile image
zinchunter

Dear Stella,

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

Ktltel profile image
Ktltel

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.

Stella

butterflyEi profile image
butterflyEi

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.

Ktltel profile image
Ktltel in reply to butterflyEi

❤❤Thank you for your reply. Good to hear from you.

Stella

ninjagirlwebb profile image
ninjagirlwebb in reply to Ktltel

🤗🤗🤗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.

I’ll ask him again when I see him Feb.

Ktltel profile image
Ktltel in reply to ninjagirlwebb

Ok. I'll mention it too. My appt. is next Thursday.

Thanks for the clarification too.

👩‍🦳👋❤

Wass71 profile image
Wass71 in reply to Ktltel

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!!

Happy holidays to you and your family.

Wass x

Ktltel profile image
Ktltel in reply to Wass71

Wass71,

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.

4pjx__ profile image
4pjx__

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.

Pam

Ktltel profile image
Ktltel in reply to 4pjx__

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.

Stella❤

kimphoebe profile image
kimphoebe in reply to 4pjx__

Hi there

Do you mind me asking but what are your bilirubin and albumin levels at the moment. Just as a quide to what mine are.

Ktltel profile image
Ktltel in reply to kimphoebe

On Dec. 12th they were:

Total Bili-0.5

Albu-4.2

Usually my bill is in the 3's...like 0.3 . This 0.5 is normal but it's higher than it's ever been for me.

Stella❤

kimphoebe profile image
kimphoebe in reply to Ktltel

Hi Stella

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

Ktltel profile image
Ktltel in reply to kimphoebe

The Ref. Range on my lab results says

0.2-1.2 mg/dL

How does yours read?

kimphoebe profile image
kimphoebe in reply to Ktltel

It just says 15

Ktltel profile image
Ktltel in reply to kimphoebe

Sorry...I just PM'd you and I forgot it's late there. We are about 6 hours behind you.

kimphoebe profile image
kimphoebe in reply to Ktltel

That’s ok it’s not to late. Xx

Hi Stella, I have nothing to add about the numbers so here's a joke -

How did Mary and Joseph know the birth weight of their son Jesus?

They had a weigh in a manger.

I hope you are feeling as fine as your picture, it's just lovely, thank you!

Ktltel profile image
Ktltel in reply to

😄👏👏👏👏👏👏👏👏👏 Thanks. I needed that!!

in reply to Ktltel

xx Thanks for asking for a joke - I needed one also.xx

Pamela4475 profile image
Pamela4475

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

Ktltel profile image
Ktltel in reply to Pamela4475

What is a CAP measurement?

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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