2 1/2 weeks ago in hospital for 2 days while doctors tried to work out if it was CGA. I myself believe it is. They put me on 90mg for those 2 days to cover the eyesight anyway. I had a scan which is what the doctors were basing their decisions on. On discharge 2 doctors were saying no one doctor said yes and I say yes. I had blood tests again on Wednesday. ESR 54 (76 in hospital) CRP 6. I am still very tender to the touch around temperal area and vision quite blurry as the day goes on. Currently on 11mg prednisolone for 5 or 6 weeks now.
Any thoughts on what I should be doing. Up until now I have had a lot of faith in my gp but currently not so sure.
Written by
shazstep
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Hi, Your ESR is still high, but as we know that could be attributed to other things.
I think you need to stay on 11mg for a few days and see how things pan out - obviously around the scar will be tender but paracetamol may help that - always worth a try.
The main concern for me is the blurriness, but having never had a TAB not sure whether it may be that, however if that continues then you need to seek advice - not easy with Christmas around the corner, I appreciate. Do you have enough Pred, and your GP’s approval to increase if you need to. If you are still worried over the holidays then don’t hesitate to go to ER.
I had a ct scan. They could not get me in for a pet scan as they said it has to be done within 72 hours. They also said there was no point in doing biopsy as it has also been proven I have GCA. The problem is on the right side totally different to the symptoms I had on the left.
I had a problem getting an accurate diagnosis from GP and rheumatologist but when I saw a neurologist ,which I had to fight for, he diagnosed GCA immediately. It might be worth asking for a referral to a neurologist but be prepared for a battle.
Thank you for your suggestion. A battle is just what I need NOT............. I have a friend who comes with me to most appointments. I will ask her to take on the battle. I will research today and find one so we can ask for a referral to who we want.
It very much depends where you are - in a few countries a neurologist may care for GCA patients but it is NOT a neurological disorder so mostly they don't.
Doesn't seem like a very high dose for GCA if it is such a relatively recent diagnosis - plus blurry eyes !! ? - I wouldn't be happy with this kind of vague 'treatment' - it isn't 'THEIR' eyesight at risk ..... and I wouldn't exactly call this intelligent tapering - seems far too fast to me ....
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Do people feel their doctors told them what they need to know?
I have never had a flare and I don't want one now....
dizziness and weaknesd
Newly Diagnosed 
