Negative biopsy-now what?

[Bro-]

I was diagnosed with PMRGCA on September 9. Immediately started 60 mg of prednisone. Had jaw claudication, sensitive scalp, blurred vision, severe headaches, fatigue and flu like symptoms . Although the body aches and jaw pain went away on prednisone I still have the tingly headaches. Went for cat scan and had a bilateral temporal biopsies on Monday- they came back negative. Is anyone still being treated for GCA even with a negative biopsy? They are tapering my prednisone but still treating me for it . I don’t know what to think do I have it or not? They don’t know. Next step a neurologist that specializes in headaches .

[PMRpro Ambassador]

A negative biopsy doesn't mean it isn't GCA - it means they didn't find what they were looking for - and if you have been on 60mg pred for 7 weeks the likelihood of it being positive was pretty low. The diagnosis is then made on symptoms and response to pred. That is supposed to be standard practice.

[SnazzyD]

I had a negative biopsy and blood inflammatory markers within normal limits. I was treated as GCA anyway because of my good response to 60mg and symptom history. I had tingly feelings in my scalp and temple on and off for some time, can’t remember how long. However, I had pains and nerve tingles from the biopsy for months. Others here have had headaches and niggles that carried on for a bit too.

I do understand the need to feel that all this is worth it and one’s life hasn’t been turned upside down for nothing. I felt this particularly because 48 hours before Pred when GCA blew up suddenly I was ok. Pred made me feel utterly terrible so to be facing months of it without definitive proof was alarming.