Just over a year into my uncomfortable journey with Mr GCA. I have managed to throw most of his luggage out of the window and am now down to 4mg of Pred from 60mg. But we had a serious crash two weeks ago today - I had a stroke. Luckily I got to hospital within an hour and got the clot buster injection which prevented any bleeding on the brain. So they let me out after three days to hobble home with my numb face, arm and leg. Thankfully I suffered no speech impediment and I've been able to do a couple of walks around the streets for about twenty minutes each with my wife every day. The local community stroke team have been visiting several times a week. I don't know how I should be feeling but doubt if I'll be ready for the Irish Olympic team next summer. I would love to hear from others who have experienced or can advise on the recovery from GCA and a stroke at the same time. Then only change to my medication is blood thinners to prevent recurrence of the stroke.
Just when I thought....: Just over a year into my... - PMRGCAuk
Just when I thought....
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Goodness me! Glad you’re feeling better. My first reaction to your history other than the crash was to have got down to 4mg in only a bit over year with a GCA diagnosis was one fast reduction plan. My second thought was that I worry that with your dose being so low that early in the disease process it put you at risk of a stroke, one of the complications of GCA. Even if you were asymptomatic, you could still have had inflammation in the arteries. I’d be asking an experienced (With GCA) Rheumatologist if your dose needs to reflect that or even ask for a PET scan to check for asymptomatic wider vessel vasculitis. There is enough written about this that they should know about it. Anyway, there will be other replies and more experienced, so sit tight.
I cannot advise you, but I wish you well....and a good recovery....
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To add to Snazzy's comments - did anyone mention to you that there is an increased risk of stroke in the first year after diagnosis with GCA? They must have a look to see if there is any residual inflammation - even if your CRP and ESR have looked OK.
But besides that, get well soon! All the best.
All the best. Glad you have good medical team on board.