Has anyone been diagnosed with Temporal Arteritis had the blood test positive the first time , had the biopsy done about 5 days after being

[trevorfandg21]

on high dose prednisone that came back negative , and the 2nd blood test 7 days later came out ok then had it determined you didn't even though you still were getting headaches but not as frequent or severe ? Now on lower dose and will be off prednisone by Wed . I had blurred vision after my first migraine and was sent to eye dr who tested me and said my stigmatism was so bad I was legally blind and got glasses . I also have vertigo . I just hope it wasn't dismissed too soon . Also dr is trying to set me up with neurologist .

[PMRpro Ambassador]

In a case like that it is probably that they put you on pred because there was a possibility it might be temporal arteritis - and not doing so would have risked you losing your sight altogether.

There is no blood test that is "positive" for GCA. The things that can be high and show there is inflammation are very non-specific and other things can lead to a raised reading. It depends how high it is as to how long it would take for the blood test to get down to normal levels - but high pred will get rid of most inflammation in the body.

A negative biopsy doesn't mean you don't have GCA - although a positive one is 100% certain. About 40% come out negative but the doctors are sure enough of their diagnosis to carry on with the pred. There are various reasons for that.

If the symptoms come back - go straight back to the doctor, especially if they are visual symptoms. He should hurry up an appointment - turn it from urgent to emergency if he is worried. There are a few things that are similar to GCA - the skill is in knowing which is what.

[trevorfandg21 in reply to PMRpro]

How do I know if I'm getting the right treatment especially when headaches continue but not as severe . Some of the issues that led to the diagnosis are now being blamed on coming off the prednisone .

[honeyadamz]

I have read that any amount of prednisone affects the biopsy. it is a catch 22 because immediate pred is necessary to save the eye, but may yield a negative biopsy. Many doctors are not up on the latest knowledge.

[trevorfandg21 in reply to honeyadamz]

Any idea on how to get them up on the latest as well as myself . I'm being weaned off and headaches are coming back plus some other stuff and dr said it's all part of coming off of prednisone .

[PMRpro Ambassador in reply to trevorfandg21]

Under the circumstances you either have to trust them or ask for another opinion. You haven't said how long you've been on pred altogether or how fast they took you off - that is bound to cause some discomfort. But make sure you ask why they think something is one and not the other. It is difficult from both sides of the fence. If it had been GCA then usually all the symptoms improve dramatically with a few days - if they didn't, that may have been enough to swing their decision to take you off pred.

[trevorfandg21 in reply to PMRpro]

I was on 80 mg for almost a month then 60 mg for a week , then dropped by 10 mg every 2-3 days . Down to 20 mg now .

[bowler in reply to trevorfandg21]

I get headaches when tapering down from Pred. When I was first diagnosed and new to the dosing of Pred, I use to up the dose thinking the GCA was getting worse !!! Also high Pred. can cause headaches, all very confusing, especially with GCA.

[PMRpro Ambassador in reply to honeyadamz]

Hardly latest knowledge - it's been known for a long time!

[bowler in reply to PMRpro]

Quite agree, old knowledge, but just saying what happens to me re the headaches, [ when I was first diagnosed with GCA] in reply to trevorfang21

[PMRpro Ambassador in reply to bowler]

Bowler: that was supposed to be a reply to trevorfandg - this forum is SO bizarre, it is so difficult to see where a response belongs! And you have to read the entire thing to see who's put in an answer since the last time you looked!

[Dorene]

I was diagnosed, in A and E, with Temporal Arteritis three years ago and immediately put on 60 mg Prednisolone. 10 days later I had a Biopsy which came back positive. As we all say, everyone is different and we cannot afford to take chances with our eye sight. If you are still worried keep going back to your GP or do as I did, My Daughter insisted she take me to A and E where I was told I could have gone Blind that weekend. Good luck.

[trevorfandg21]

Sorry I don't know what A and E is .

[PMRpro Ambassador in reply to trevorfandg21]

Or if you are t'other side of the pond it's Emergency Room or Department

[Hidden]

Accident and Emergency Dept. used to be called Casualty!