Just had a MRE: Just an update....I had a... - PBC Foundation

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Just had a MRE

Just an update....I had a fibroscan several months ago, just after I was diagnosed with PBC, that showed stage 2-3 fibrosis. It was a real shocker considering I feel good, my labs were not terrible, and I appeared to be in good health. My hepatologist was also a bit surprised at the results so I was recently scheduled for a MRE...which seems to have a reputation of being more accurate. I'm so thankful and happy to report that my kPa was 2.8 (F0-F1: minimal to no hepatic fibrosis) and no other problems were found. I'll take that! This disease has so many ups and downs when you are first learning about it. I still do not know everything I need to, but take it one step at a time🙂

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Great news!💃💃💃💃

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That's a great relief for you! Phew. Rest well tonite.

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That’s great! Maybe ditch the fibroscan & just ask for the MRE going forward for comparison tests in future.

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Thank you and yes, I will definitely ask for that going forward

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Glad that you are well!

Only I never heard of MRE. I'm in the US. Usually have Shear-wave elastography done. It's a special ultrasound that tests the tissue elasticity in the liver. What is MRE?

Thanks.

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Hi iagra,

I think they are similar in that they both can measure liver fibrosis, but MRE (magnetic resonance elastography) uses MRI imaging in addition to sound waves. Hope this helps😊

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Forgot to mention I am also in the U.S.

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Does MRE require contrast injection?

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Hi VeeWat,

I'm not really sure but I don't think it's required. My order was for an MRI with and without contrast so I had the contrast injection. However I also had a MRCP at the same time and I feel like the contrast was more for that. I asked a lot of questions about the injection and was assured it contained no iodine and was an improvement over contrast dyes used in the past. I had absolutely no side effects and the test was painless🙌🏼🙂

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According to this mayoclinic.org/tests-proced...

the contrast injection is not required. I had CAT SCAN once with the contrast injection. They pushed it into my flesh, instead of the vein and the pain was excruciating. They stopped the scan and pulled me out. It took me an hour to recover and then they repeated. But, of course, this was an anomaly, most cases go well. But, if the contrast is not required, that'd be even better.

How much time the whole MRE test took?

Thanks.

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So sorry you had that experience with the contrast injection and good news that it's not necessary. As far as time, I also had another test and my report says that images were taken before and after the contrast but all in all the entire procedure was less than 30 minutes. It's quite noisy with lots of banging that is typical of any MRI but they provided earplugs. I was asked to hold my breath on and off throughout. I think the longest I had to hold it was about 24 seconds. Prior to entering the MRI machine, they placed what they called a "paddle" over where my liver is located (upper right side) and sorta strapped it on with a soft belt. When the elastography portion began there was a lot of vibration but nothing uncomfortable. That part literally was less than 5 minutes. Hope this was helpful🙂

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Thanks so much! This is good to know that the liver part was only 5 min. This coincides with what Mayo Clinic article said about the duration. 24 second, I have to practice that. ... Just tried, actually was able to hold the breath for almost 30 sec. Didn't even know that I could that. Thanks for heads-up with this!

Have a great day!

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Great news! Yes indeed this disease does have many ups and downs and even after trying to learn something of it over the last 13 odd years there is much still to take in.

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Thank you. Yes...I'm in for a lifetime of learning. I feel like even among good doctors, they still don't know a lot about the disease, so as more research is done we'll all be learning together💕🙂

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Do the Drs feel the MRE The best test , I never had that or the fibroscan done , I have PBC about 30-36 yrs , i’m Going to NYC A LIVER group for an opinion as to what stage

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Hi Arlie,

After my fibroscan, I was really hesitant to do a biopsy and my doctor really didn't think it would provide much more information so he suggested the MRE and from what I've read it does seem to be the gold standard for measuring fibrosis, but that may be just more of an opinion. Good luck on getting your staging information. It's such a gray area sometimes, but I think the key is sticking with the same test over time to compare and monitor your progression💕Keep us updated please

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What does the kPA test for

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kPa is just how the degree of liver stiffness is calculated or measured. It stands for kilopascal which is a unit of pressure measurement. Fibrosis is staged (F0-F4) and each stage has a kPa reference range. For example, stage F0-1 is 2-7 kPa. This is based on the info I was given but the reference ranges may be different just like we sometimes have different lab value ranges. Your doctor would be the best person to explain it, but hope this helped some😊

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Thanks chik

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Hi Healthy, I’m 60, was diagnosed with PBC five years ago. Had the ultrasound of my liver which didn’t detect hardening. I’m putting off a biopsy and not taking URSO. Trying to eat more healthfully, doing food combining (eating similar foods together at same time with time in between next type of food, ie. fruit vs. starch vs. protein), and trying to not eat for 12 hrs. straight (10PM-10AM) to give my liver a rest. I hope I’m okay; I don’t want to make the mistake Steve Jobs made when he refused conventional medical treatment, which probably would have saved him.

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Hi scburns,

Great news about your ultrasound. Was it recent?

I'm 52 and I understand not wanting to take medication, however, I look at things a little differently. I have always been a very healthy eater and exercised regularly...for the most part.. so I didn't feel like dietary changes would help me much. When I was first diagnosed, it was hard for me to believe. Definitely had a little bit of denial going on. I had never heard of PBC, but I clearly met the diagnostic criteria. Although there is so much unknown about the disease, we do know that if you are a responder, Urso will help bring your labs down which in turn hopefully slows the progression of the disease. And since I've had 2 imaging tests with different results, I just dont feel like I can gamble with not taking the meds and luckily I haven't had any side effects. I'm wishing the best for you and I hope you are able to monitor your lab values regularly as well as keep a check on the condition of your liver. Hope we both have many healthy years ahead😊

Many Hugs💕🤗and keep us updated.

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I am surprised that your doctor is okay with you not taking urso for pbc. If you definitely have pbc, you should be on urso. It will slow down pbc progression. Please speak to your doctor or hepatologist again to advise you.

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Thanks so much healthy! Yeah, I couldn’t believe the diagnosis either! I was never a big drinker, ate well, tons of running/exercise. But yes, you’re right, definitely should not gamble with this! Thanks for reminding me to keep an eye on it! Unfortunately my blood test results are pretty bad! And do you ever feel your liver aching at all? I do; it’s so weird. Since you’re experience with URSO has been good I’ll try to open my mind to it. Thanks again, and good luck to both of us!

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No, I've never had any liver pain, but my labs were elevated when I was diagnosed last year. Urso has gotten everything back to normal levels except my Alkaline Phosphatase which is almost there, so I can't deny that it is helping. It's the only med I take except for Vitamin D and calcium

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Good to know, thanks. (I’ve changed my profile name to scthompson.)

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