I am loving reading other people's experiences of temporal arteritis as so many correspond to mine. They did not ring bells with my GP practice (5 doctors, kept being telephoned by a different one) so that I had to wait for three months for a diagnosis from them. From May to Aug 2020 I was in such pain from the headaches that I couldn't do anything. Luckily I had been diagnosed by my GP daughter in law who told me what to ask for, what tests to ask for and so on. Thanks to her I was put on prednisolone before the official diagnosis was given so my appalling headaches began to subside.
I think ignorance of GPs is understandable. I am only the third case the senior partner of my practice has seen in 40 years. But this does make getting the right treatment for all the side effects of the disease and prednisolone difficult, No one has cured my watery eyes and blurred vision despite eye tests galore. Eyes diagnosed as healthy but I cannot sight read at the piano. My limbs very trembly and my balance affected.
But thanks to all you contributors. So good to know I am not alone. And I am getting stronger as the steroid dose comes down, currently on 15mg so I hope that will be encouraging to others.
Beethovenite.
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beethovenite
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I saw 7 different in Doctors in 3 weeks before diagnosed with GCA in August 2019, like you terrible debilitating headaches but still the doctors didn’t pick up on it, oddly enough it was the youngest doctor that knew what it was straight away when I described the headaches, I will say since since it has been brought to the surgeries attention about my GCA they can’t go out of their way enough to help me, I guess they feel guilty.
See you’ve read my info post so won’t add it again.
Well done DIL - good girl!
Watery eye could be dry eye - sounds a misnomer - but a fact...you can get eye drops either on prescription or from chemists.
Blurred vision is likely a side effect of Pred, and should be better as you lower, but have cataracts been completely discounted - steroid induced is quite common especially after higher doses.
Some do complain of shakiness, but do keep your eye on it and discuss with doctor if doesn't improve .
Balance can also be a side effect of Pred, might be worth speaking to doctor or DIL for some exercises to help.
You might like to ease up a bit on the tapering now - reducing ar higher doses are much easier than on lower ones.
Hello. Pred played havoc with my focus and it was the moving goalposts with dose changes that were irritating because I couldn’t change my glasses prescription every time. I had to have drops to stop my eyes being easily irritated. This too went with low doses. No excuse for not spotting your diagnosis. I was a mere practice nurse trained in minor illnesses. Even I knew to call the GP if certain symptoms came up. I had no idea of the details of GCA was but I knew how to spot it. I diagnosed myself and then googled it!
Hi and welcome, I seemed to experience every unpleasant side effect of steroids but to give you hope , as the dose reduced they really did improve, my eyes were sticky in the morning, but not infected, this just went away as did so many other things. I found it so hard at the beginning to stay positive but now 19 months on from diagnosis I am really pleased with how so much as improved.
Like Devoid, the first 18mths on pred were a real rollercoaster ride of side effects (and sometimes withdrawal effects after tapering). This included things like:- a feeling that my eyes were constantly trying to focus...and then refocus.....so my vision was sort of 'blurry' at times. Watering eyes. Headache ( but not GCA) Jelly legs. Mild balance issues. Insomnia. Extreme fatigue. Massively diminished physical strength. Reoccurring sore throat. Palpitations. Tight chest. ... ....the list seemed endless but as I tapered down to 2.5mg these all diminished. Unfortunately for various reasons, I'm back up to 11mg and although not all of these side effects have returned, I have noticed a slight moon face occurring and I've had to be even more vigilant about preventing weight gain. (These weren't a problem on high dose first time around, but I guess the 2nd time, you have to take into account the cumulative impact. Things will, and do improve.
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Newby on the block!
First Post on PMR/GCA
PMR....RA??
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Is it usual to feel so unwell on prednisolone?
