Interleukin 6 Monitoring: Has anybody had an IL-... - PMRGCAuk

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Interleukin 6 Monitoring

ChrisBeeLoop profile image
10 Replies

Has anybody had an IL-6 blood test to check on inflammation? Was that through your GP or privately?

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ChrisBeeLoop profile image
ChrisBeeLoop
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10 Replies
krillemy profile image
krillemy

👀 No, but I would be interested to know as well. It is only done in the biggest hospital here in Copenhagen, but not for PMR

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

According to NHS - you'll only be referred if clinician's deems it necessary - and if you had/are having CRP & ESR tested regularly I doubt they will. But nothing to stop you asking ..

PMRpro profile image
PMRproAmbassador

I had one done by a rheumy in the NHS about 15 years ago I think but never knew the result.

oigor profile image
oigor

I am in US though, have PMR since Sept. 2020, my CRP and ESR were always within 10-20 ranges in 2021-2023, however since Aug. 2024 they both somehow normal/low. I do those two blood tests every 2 months.

I did read at pmrandil6.com and asked my rheumatologist if it is possible to order IL-6 blood test, and he did, it was covered by insurance as other blood tests, so it is rare, but perfectly available test.

I did get the following results in Jan. 25 (all three tests done at the same time):

CRP - 6.0 mg/L (normal 0-9)

ESR - 6 mm/hr (normal 0-20)

IL-6 - 5.34 pg/mL (normal <5).

Rheumatologist said my high IL-6 is not a concern, it is somewhat borderline. He said this confirms that I rather have prednisone withdrawal problems, so I continue tapering slowly - I am at 3.5 mg now.

There is a little disclaimer in the IL-6 result:

This test was performed using a kit that has not been cleared or approved by the FDA. The analytical performance characteristics of this test have been determined by Quest Diagnostics Nichols Institute San Juan Capistrano. This test should not be used for diagnosis without confirmation by other medically established means.

ChrisBeeLoop profile image
ChrisBeeLoop in reply tooigor

Now you have confused me, Oigor. I thought a high level of IL-6 meant that there was inflammatory action still going on in your body so the PMR is still active. The preds are managing the symptoms but the underlying problem is still there?

PMRpro profile image
PMRproAmbassador in reply toChrisBeeLoop

When on Actemra the ESR and CRP are low - and the IL-6 in blood will be higher because the Actemra stops it attaching to the receptors on the cells it needs to cause the inflammation so ti floats around in the blood rather than being fixed to cells.

oigor profile image
oigor in reply toChrisBeeLoop

I was told that my IL-6 (5.34) is not really high, really high would be 20+.

MarksPoint profile image
MarksPoint

I have had them...done privately... because I am on Actemra and CRP and ESR don't register. I'm due for another one this week.

Hoping it is in the normal range as last time it was a bit high.

ChrisBeeLoop profile image
ChrisBeeLoop in reply toMarksPoint

That's interesting. Where do you have it done, Mark, and do you get a useful result? I guess you do or you wouldn’t be repeating it.

MarksPoint profile image
MarksPoint in reply toChrisBeeLoop

Im in NSW Australia and a company called IMedical do a lot of blood tests that you have to pay for but they are very affordable.

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