Had acupuncture last week and as the evening progressed the eyes started to stablise. The next day they were much better and now getting no double vision. However headaches are still rumbling away, general background ache which builds up to what feels like sharp pressure behind eyes. More blood tests on Tuesday, GCR down to 9 last week (from 20). Doctor saying that todays view is biopsy now no true indicator of gca and saying there really isn't any way of diagnosing it (anyone any views on this)? Still on 20gms of pred, have been taking at lunchtime by which time headache is usually bad so have been taking ibruprofin as well so not sure what is helping, today I am switching to pred at breakfast and will see if headache stays away, if so then I feel I am thinking more towards gca if it doesn't and the ibroprofin works at lunchtime then not gca - seems the only diagnosis I can think of!!
Update on Double vision: Had acupuncture last week... - PMRGCAuk
Update on Double vision
My GCA/LVV was diagnosed by an ultrasound scan and a specially trained technician. Abnormal cells were spotted in my left armpit. I haven’t heard the biopsy dismissed before. They can give a false negative if they look at the wrong section of Artery though. Please don’t take Ibuprofen alongside Pred, you can seriously damage your stomach. Even for PMR, some people need as much as 25/30 to get on top of the inflammation initially. I would worry that my doctor pussy footing around was putting my eyesight at risk quite honestly. I think I would go to A&E, actually, I definitely would.
I am glad the acupuncture has done something positive.
Biopsy is not always 100% accurate - as we all know...but GP is not correct in saying GCA cannot be diagnosed! As SJ said scans are available...not to mention symptoms and their reaction to steroids....
Just another point, you shouldn’t really be taking too much ibruprofen alongside Pred...both can cause stomach issues.
I think Prof Dasgupta might disagree as he and his group have developed a sort of algorithm which indicates pretty accurately whether it is not likely to be GCA - I think he said 98% correct in ruling it out. It was 75% successful in ruling it in. I think it was based on the ultrasound examination of the temporal artery and the brachial artery (in the arm pit) and the halo sign together with presenting symptoms. Then there is imaging - PET-CT will diagnose large vessel vascilitis outside the head and MRA is also useful in GCA. There are a lot of things in medicine that require multiple approaches which each add to the inex of suspicion.
Actually it has never been the case that the biopsy was 100% accurate. If giant cells were found, that was 100% certainty it was GCA - but not seeing them never did mean it wasn't GCA - it meant just that they didn't find them in the bit of artery they looked at. But too many seemed not to grasp that concept.
My experience with acupuncture is very slight having had it performed on me just once! It had no visible affect on me and thus cannot supply you with any advice - good or bad!
Can only wish you well in the circumstances. Take care.
Regretfully,
Patrick