Can anyone provide a link to recent research indicating that a proportion of GCA patients do not present with unusual blood inflammation markers?
I believe I have read this on this forum. I'm getting no support from my consultant for continuing symptoms of GCA because he sees no abnormal bloods. Thanks.
I'd be very interested too as mine was only 16 and I have my first follow-up since starting Pred in a couple of weeks after neg biopsy.
It isn't recent research.
nature.com/eye/journal/v17/...
patient.info/doctor/giant-c... (look under Investigations)
ncbi.nlm.nih.gov/pubmed/109...
aaojournal.org/article/S016...
In the last link they found one patient from 118 with both ESR and CRP being normal - but all the patients were TAB positive. It isn't common - but it happens.
And of course - if your ESR is 28 many doctors would say that was normal for your age, but if your "personal" normal happens to be 4 (mine is) then it would be very elevated! And no-one has had their "personal normal" readings tracked before. PMR/GCA strikes.
Thank you. my last results (last week) were:
ESR 5 mm/h [1.0 - 14.0]
CRPl 0.5 mg/L [0.0 - 6.0]
I'm getting temporal headache, stabbing pains in the eyes and vision disturbance on a daily basis now, which definitely improve when I increase the steroids from 22 mgs to 25 mgs, and return when I reduce down again. Question is, could there be another explanation?
Unfortunately it's all confused by the fact that high eye pressures have been diagnosed and I'm having an iridotomy to reduce the chance of acute glaucoma - all possibly as a result of long term steroid use.
There possibly COULD be another explanation - but you definitely need to find a doctor who takes you seriously and doesn't discount the obvious answer (symptoms plus response to pred are suggesting it). Especially if the visual symptoms are increasing - loss of vision in GCA is irreversible and personally - if a higher dose of pred saves me from that, I'll accept the risks.
And another: ncbi.nlm.nih.gov/pmc/articl...
Yes know how frustrating this can be Ronnie101. I was diagnosed with PMR and this later morphed into what I thought was definitely GCA.It didn't present though as temporal arteritis but was at the back of the head, side of neck, ear and stabbing searing pain at the side of the head. My bloods have always been normal and ESR has never been above 16, mostly at 11 and CRP usually between 1 and -1 !
Because my GP was very sceptical because temporal arteries were not affected I went to see a Consultant Rheumatologist privately. His diagnosis has now been cranial GCA and also when I have tried reducing my pred at 1 mg per month on DSNS stop method the head pain has returned and also flared when I recently had a UTI ( (PMR symptoms were increased but manageable) So I would perhaps arrange to see another Consultant on NHS or privately for second opinion. Certainly as you can see I am an example of someone who has GCA although blood work does not reflect this. Let us know how you get on. Jackie
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