Test other than template biopsy to confirm gca - PMRGCAuk

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Test other than template biopsy to confirm gca

Rajuguide profile image
Rajuguide
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Wishing everyone happy and healthy new year 🙏🙏

My , wife could not do template biopsy but she have symptom similar to gca headache, pressure on eye and ear ,from last 6 months ,she is on prednisone .and actemra is stop recently , dr tried mri head,pet scan , lumbar puncture , .esr but ,all are normal .will any one guide me , is there any other test other than template biopsy , to confirm 100% GCA?

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Rajuguide
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Even a temporal artery biopsy is not a 100% answer - when positive it is 100% certain it is GCA. However, less than 40% are positive and being negative doesn't mean it isn't GCA. It means the giant cells weren't to be found in the sample they looked at.

We have told you repeatedly - they seem to have done all the available options. They have tried using Actemra - if it doesn't work it increases the suspicion that it is something other than GCA. There are other conditions that can mimic the general symptoms of GCA. You appear to have a broad selection of doctors - who know a lot more about the diagnostic options than anyone on the forum.

SheffieldJane profile image
SheffieldJane

The thing that would convince me that is something other than GCA is the fact that Prednisone gave her no relief. My own GCA was diagnosed with a specialist ultrasound scan. Giant cells were spotted in my left armpit and my diagnosis is Giant Cell Arteritis/ Large Vessel Vasculitis. Prednisalone is the only drug that gave me clear and swift relief. I hope for both of your sakes that a correct diagnosis and treatment can be applied. Just a wild guess. I had a close friend who had mysterious symptoms similar to your wife’s. Eventually it was found that he had a thickening of the heart muscle. His headaches and ear pain were crippling. Nothing led to his eventual diagnosis. Sometimes our symptoms don’t make logical sense. Best wishes to you both.

SnazzyD profile image
SnazzyD

Has she had a simple musculoskeletal assessment by someone who is a specialist in the area that looks at function? Some issues can mimic GCA quite painfully that won’t show up on any Scans and wont be helped by steroids. Rheumatologists are looking for pathology not detailed function, and neither will an eye specialist. Also, in my experience specialists don’t tend to know much details outside their field, understandably.

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