MRI with Contrast /PBC

[tnchikadee]

Hello everyone. So I am almost a year into being diagnosed with PBC. I have had 2 mri's with contrast , once when first diagnosed and another in Sept. They were unremarkable except for a simple cyst on my liver and a few simple cyst on my kidneys. My doctor has me scheduled for another mri in Feb. Needless to say these tests are very expensive even after insurance has covered their part. Does 3 mri tests seem excessive within a year of diagnosis when they are showing no liver, bile damage and seem pretty much normal? Also, can mri with contrast stage your PBC?. I asked my doctor about staging, , my liver numbers are normal since being on urso and he said the mri tells him enough of a picture. I see everyone getting staged , should I be concerned?

[HealthyChik]

Hi,

I was diagnosed about a year and a half ago and have never had a biopsy for staging. My doctor also thinks he can get enough information without it. The first imaging test I had was a fibroscan and my doc felt like it may not be accurate. I then had a MRI with and without contrast with an MRE added to it. The MRE report actually gave a stage. I was F0-F1 and my labs are all back in normal range on URSO🙌 I was adamant about knowing a stage but with time, I've decided it's not that important to me. PBC affects people of all stages so differently, but I must admit it's comforting seeing the reports come back indicating no fibrosis. My doc wants an MRI w/wo contrast and a MRE once a year for monitoring purposes. They are very expensive and I asked if I could just have the MRE without all the contrast and he just prefers the whole package. Unfortunately, I have mine in January before my deductible is met so it's always a huge out of pocket expense😕I would certainly hate to pay for it three times a year. Hope this helps💕😊

mayoclinic.org/tests-proced...

[tnchikadee in reply to HealthyChik]

Thank you so much. I am going to ask him after my next one in Feb is it really necessary if my liver numbers stay normal to have mri 3 times a year. I mean won’t an ultrasound be sufficient ?

[HealthyChik in reply to tnchikadee]

3 times certainly sounds like a lot. I personally prefer the accuracy of MRE over the ultrasound or fibroscan(in my case) but there are plenty on here that are monitored by yearly fibroscans which I assume are cheaper. I think the key is to pick one test and be consistent with it in order to accurately monitor changes.

[tnchikadee in reply to HealthyChik]

Thank you for your reply. Yeah I thought 3 was a lot unless there’s something they didn’t tell me. Not sure but I def will be asking .

[VeeWat in reply to HealthyChik]

I’ve never had an MRE. How does that work? You do the MRI first and then?

Can it be done alone without MRI?

[HealthyChik in reply to VeeWat]

The MRE is usually done as part of an MRI. My doc always orders them together. My guess is that it would probably cost the same as an MRI if done separately simply because it's looked at as a type of MRI. I'm not sure if they can be ordered separately🤷🏻‍♀️The actual MRE part only takes less than 5 minutes and I'm pretty sure it doesn't require contrast dye. They place a flat paddle-like device over your liver (RUQ) and I felt some vibration and thumping..did not hurt at all. The MRE gives a very detailed report of the stiffness of the entire liver and my report provided a stage similar to what I got with fibroscan results (scale of F0-F4). See the link below which explains it far better than I can.

mayoclinic.org/tests-proced...

[VeeWat in reply to HealthyChik]

Thanks. Did you have contrast dye with your mri?

Just wondering if you can have mri without contast and then have add -on MRE without contrast.

[tnchikadee in reply to VeeWat]

Yes with contrast all 3 times

[HealthyChik in reply to VeeWat]

I had contrast dye but I'm almost certain you can have both without it. Some people can't tolerate the dye

[ENuk]

I am in the UK and I would think routine MRIs are not done for PBC.

I have however had 2 MRI's in 18 months because I have tumours which for a period of time they thought could be malignant.

At reviews I have a symptom check, bloods and fibroscan which seems to be sufficient for my Dr to monitor the condition.

[tnchikadee in reply to ENuk]

I have a simple cyst on liver and a few in my kidneys but they said those are not anything they are worried about.

[Hidden]

Good morning tnchikadee,

In the UK MRI is not a standard diagnostic tool in PBC, however, everyone is an individual, and it may be appropriate for you.

I think it is reasonable to discuss this with your doctor and ask his rationale for doing so, partcularly as you say you are well controlled on Ursodeoxycholic acid and your test results are 'normal'

I have included a link to the British Liver Trust information on PBC and liver disease tests explained - please do note this is based on UK practice.

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

Best wishes,

Trust9

[tnchikadee in reply to Hidden]

Thank you so much

[Kristian]

3 in a year does seem a bit excessive. I can well imagine 1 every 12 months to look for any progression, not sure what the benefit have having 3 in a year would bring. Definitely worth raising.

[tnchikadee in reply to Kristian]

Thank you