I have just been fast tracked and have a diagnosis of GCA. Not what I wanted to hear after just having had PMR for 3.5 years ! But I have a very good consultant and my PMR was successfully managed , so I am hopeful that this will be the case with GCA.
Anyone any tips for living with GCA?
Much the same as PMR tbh! Just be very aware of any eye issues obviously.
I only had GCA, and after the original debacle diagnosing it, my time treating the disease was relatively easy - provide you are allowed to taper sensibly.
I am in the same position as you ( 4 years PMR down to 3 mgs and then GCA diagnosis). I really am taking it one day at a time. I am monitoring the main GCA symptoms but I have found the taper from 40 mgs to 15 mgs so much easier than my PMR taper. No pains, just extreme fatigue and viral feelings in the evening. I have just hit a wall with slight head pain and sore eyes at 15 mgs. I have been prescribed self administered, subcutaneous, injections of Tocilizumab and am due my third tomorrow. I am wondering if these weekly injections are already helping me to get off Pred? Pred served me well, but I have just been diagnosed with mild steroid induced diabetes and I know that I need to part company with it. I am trying not to dwell on the disappointment. My PMR symptoms are not in evidence. Something tells me that my experience of GCA is going to be very different. I am hoping to use the time to build up a much better level of fitness. I suspect that Large Cell Vasculitis may have been lurking for a long time, impeding my progress in treating the symptoms of PMR. Early days. The diabetes comes with a lot of regular health checks and lifestyle improvements - diet and exercise, coupled with a greater understanding of the impact of both. So perhaps that is the blessing. I hope to get it under control without Metformin and raised BP without meds too. Wishing you all the best!
I started with GCA in March 2017 and the PMR arrived a month later so I had them alongside each other almost from the start. I think the main things you will have to deal with are the deathly fatigue and general feeling of unwellness, but you're probably accustomed to those already. Of course, with a higher dosage of pred you may well experiencer an increase in side effects. Those I remember best from when I was on a high dose are the rampant hunger and the nightly insomnia...
At least you’re partly used to this game. I would say that with the higher doses of Pred you need to be more careful with diet to stabilise blood sugars to try to avoid diabetes and weight gain. Disturbed nights can be a pain, so naps are a must. Don’t rush it. Good luck .
Hi Pritch 60
It looks very much you are in the same situation I'm in here in New Zealand: PMR and now GCA.
I was diagnosed with PMR at age 73 in September 2017. After four 'flares' along the way, just three weeks ago I was pretty much 'symptom free' chugging along on a comfortable, very slow, DSNS taper at 3 mg Pred a day. I was looking forward to joining the 'Pred Zero Club' in another six or so months. Bloods had been in their normal ranges for well over two years and my last 'flare' was over 18 months ago.
Then, quite suddenly, three weeks ago, I started having a really persistent headache. Now I'm not a guy who normally ever gets headaches. Unless I'm totally sozzled which, my wife assures me, hasn't happened in the last 45 years anyway.
I tried Paracetamol but, after a week during which the headache persisted unabated, I started re-reading the GCA chapter of Kate Gilbert's excellent PMR & GCA book. On discovering a spot on my left temple that was really sore, I went to my GP who took my bloods and put me straight back up to 40 mg Pred a day... The headache and the painful temple were sorted within 24 hours. So, despite my ESR & CRP scores coming back still in their normal ranges, it looks very like GCA alright.
The good news is that, this time around, I seem to be having very few side effects. I'm sleeping just fine, I have no difficulties getting going in the morning and no issues driving three hours without a stop etc. The only thing I'm noticing I'm hungry all the time again: I'll have to go easy on the carbs again.
My GP dropped the Pred down to 30 mg a day after one week and down to 25 mg a day a week later. Next week, I'll get my bloods done again; not that my GP sets much score by them.
Then, all being well, I plan on restarting a new DSNS taper again. Maybe I'll never join the 'Pred Club Zero' and have to settle on 5 mg Pred a day for life when I get back down there in a couple of years or so ?
Anyway, Pritch60, I wish you all the best for a smooth ride down the Pred 'Snakes and Ladders' game we are seemingly all playing. Good luck !
I'm a bit concerned at the speed with which your doctor is reducing the pred - most protocols would say a month at the starting dose - and the 30mg was a very low GCA starting dose anyway.
My GP did crank me back up to 40 mg for one week. Down to 30 mg following week, 25 mg currently. I'm planning to restart the DSNS taper next week. Does that sound OK ? GP and I think we have nipped the GCA in the bud and this taper is appropriate. Headache's all gone, no pain in temple, eyesight still totally OK.
You don't "nip GCA in the bud" with a dollop of pred I fear. The pred is not thought to have any effect on the actual underlying autoimmune cause of GCA - all it does is combat the inflammation which is causing artery walls to swell and compromise the blood flow. The a/i part will continue creating inflammatory substances and the pred will remove enough to keep the SYMPTOMS under control, just like a dripping tap into a bucket will eventually fill it unless you scoop out more water than the tap is putting in. The use of pred in GCA, as in PMR, is ongoing and needs to be at a high enough dose as long as the a/i disorder is active - which will be anything from 2 years up. At any dose as you go down you still need at least 3-4 weeks to be sure it is still enough. With PMR all that happens if you overshoot is you get very stiff and sore. In GCA your vision remains at risk - and that is not something to mess about with.
And very good though your GP seems to be - you need a fast track/emergency referral to a rheumatologist.
I've had GCA for over 4 years now. It sucks! But the pains are short. You just learn to live with them. However, the exhaustion is horrible. Hopefully, you'll have more energy than I do. I had GCA for a year, then it went away for almost a year. It came back over 4 years ago, but this time I didn't have the high fevers. You just need to deal with the head pains and know they end in a few minutes. Don't dwell on them.
I should have said that I'm down to 3mg of prednisone, but it's been up and down for all that time. I'd go from 60mg down to 10 and back up to 40. I'm finally down to three and hope to stay there.
I do find that two aspirin really help with the pain more than most other meds. If I'm absolutely miserable, I take 50 - 100 mg tramadol. That helps too, but I try not to take it too often.
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