PMRGCAuk
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Could this be GCA?

Down to 3 mg pred after 15 months of PMR. Doc sent me to neurology as having blurred vision. Getting no temple or jaw pain and physical tests done by (lovely) neurologist didn't automatically point to GCA so think he is stumped... I get dull ache sometimes back of head at base of skull, fatigue back again too and have upped pred to 4mgs 'just in case'. Tomorrow I go to get a MRI brain scan and Lumbar Puncture. I'm still sure this is steroid induced and NHS just taking extra precautions but does GCA ever sometimes present itself in the way I am describing my symptoms? I'm beginning to panic as I was getting so close to getting off pred and congratulating myself that I have been doing so well. As they say here in Scotland "I'm fair scunnered".

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Hi,

Could be steroid induced, but good to hear you are being checked. There are many things it could be, but I guess we always go for GCA. The fatigue could well be adrenal glands taking time to get functioning again, so I wouldn’t be too perturbed by that. Not too sure about the head pain and eyes, they could be connected, but hopefully tomorrow you will get some answers.

Don’t be too ‘scunnered’ about being so close to the end of Pred. It’s a very low dose, and as we always say, if you need it, you need it! If the PMR’s still lurking then you do need it.

Please let us know the outcome, and good luck for tomorrow.

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Thank you!

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GCA headache can also be at the lower back of your head but I'd expect it to be more persistent I think.

Ah weel - it'll keep ye from wearying ;-)

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Oh well hopefully I’ll know tomorrow... weel kent Scots pmrpro!

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Lived there long enough ;-)

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Well went to neurology last week for MRI brain scan and Lumber puncture (5 attempts! Truly ghastly experience). They have confirmed vasculitis in my brain (would that be GCA?) but also say there is something deeper in my head showing up which is a little worrying. They don't know what this is but say it is an antibody showing positive? Not sure what this means. They are going to refer me to neurological optometry and neurological psychology and taking DNA samples for hereditary conditions. I thought they would hoik up my steroids there and then (at 4mgs at mo) but they said to stay on that dose meanwhile. Seems like my PMR is coming back as painful shoulders are returning etc etc and ulcerative colitis returned as well.

Just when I thought I was coming to the end of my PMR journey.....

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It might be GCA but there are other forms of cranial/cerebral arteritis and they are often treated with other drugs. Do tell us when you know more.

No - really not sure I could take 5 attempts at an LP, when they get it right first time is bad enough.

Would they let you raise the dose a bit to manage the PMR at least? How horribly disappointing for you though. Hugs xxxxxx

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No they told me to stick at 4mgs. Thanks for hugs - a bit needy at the moment and going to Australia soon to see my new granddaughter so if anything gets in the way of me going I will NOT be a happy person......

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No - could imagine! Sorry the hugs have to be virtual xxxx

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