Biopsies Negative both sides
Posted , 7 users are following.
Both sides negative...biopsies for GCA, now what to do? Rheumatology wants to start decreasing prednisone and see what happens with the symptoms.
1 like, 9 replies
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Notes on Biopsies Negative both sides
christophe38948 linda04580
Posted
When biopsy is OK then decreasing the Pred should be successful, but no rapidly only, in my case, 1mg/day for month.
Good Luck
CW
EileenH linda04580
Posted
Having negative biopsies does NOT mean it isn't GCA - it just means that they didn't find the giant cells they were looking for. There are several reasons for that - it not being GCA is only one option. The cells aren't evenly spread in the tissue, the GCA may not be present in the temporal artery but be elsewhere, the surgeon may not be very good and a few others.
How convinced was your rheumy it was GCA? It is really a clinical diagnosis - the symptoms and history, the biopsy is just in the hope it may be positive which is 100% confirmation and no-one can argue with the diagnosis. But his idea of reducing and seeing if the symptoms come back is OK providing he is very careful and monitors you closely. If the symptoms return you need to go back to a suitably high dose.
Reeceregan EileenH
Posted
Hahaha...”what she said”. I should have waited for your excellent as always response. 👍
linda04580 EileenH
Posted
EileenH Reeceregan
Posted
I thought your response was very good - don't hide you light under a bushel...
Reeceregan linda04580
Posted
Hi Linda04580,
Remember though that if you have been on pred BEFORE the biopsies, it is very likely that they will show negative, as did mine. The treatment for GCA is a higher dose of pred, so it makes sense that it may have responded to the treatment already. I was on pred for 7 weeks pre- biopsy...he even told me he expected it to show negative. ( I now question why he put me through it given I had 99% of the symptoms and already begun the required treatment anyway). It was a few more weeks before he started the dosage reduction, based on my inflammatory markers and symptom recovery. In short, GCA has to be a clinical diagnosis based on symptoms. If you have the symptoms and a negative biopsy, chances are you still have GCA so treat as such. Once the symptoms abate, maybe that’s the time to start the tapering. Worked for me. Started on 50mg 5 months ago, now about to drop to 12mg tomorrow. Good luck and take care. 💪
linda04580 Reeceregan
Posted
EileenH linda04580
Posted
Sounds a fair cop it could well be GCA then - do hope the rheumy rethinks because you shouldn't be reducing until that occipital headache is gone. GCA likes the occipital region - but a lot of doctors seem oblivious of the fact.
linda04580 EileenH
Posted