I was diagnosed with GCA in Aug 22. I was started on 40mg pred. I am following the tapering regime given to me by the rheumatologist. I am currently on 20 mg. My ESR is 11 and CRP is ok. I had my COVID injection 2 weeks ago and since then have noticed transient aches/ funny sensations in my head. Otherwise, I feel well. It is worrying me as I don't know if this is normal, I know I am super aware of every sensation in my body at the moment. These aches/sensations are similar to what led me to go to hospital in August.
My question is - when you have GCA is it normal to get sensations/transient aches in your head?
When should I seek medical attention?
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gardener96
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That seems a very fast taper in GCA - many people I know took the best part of 6 months to get to 20mg with recurrence of symptoms on the way.
There is evidence that the vaccine can result in short flares of symptoms so that may be the case for you. But if you are worried - do you have a rheumatology helpline to contact?
I telephoned the nurses helpline on Monday but all she said was to go to A & E if I became worse or had vidual disturbances . My Consultant is on holiday.
Oh wonderful! Surely there is a locum to deal with emergencies? They must have a senior registrar (or whatever they are called now ...) Or have they assumed there are no emergencies in rheumatology. In which case - they are wrong.
However - keep an eye in things and head for A&E if they worsen at all. And when you go - take a good book! It may be a long wait ...
If I get any GCA symptoms however vague they seem I ring the rheumatology department for advice, and I usually have to increase pred until they subside.
Preferably as soon as possible -it may be a flare due to vaccine as PMRpro has suggested -but as she also says a very fast taper -so it may have been brewing anyway….as for inflammation markers, they very often lag behind symptoms are are not the ‘be all and end all’ that some people think.
Taper may be accordingly to guidelines/Rheumy, but that doesn’t make it infallible -as many before you have discovered.
Response from Rheumy department not good enough really - but if only alternate is A&E then go down that route… and tell them why it was necessary.
Finally, if you are on the correct dose for your GCA’s activity, then no you shouldn’t have issues with head -that indicates too low a dose.
'When you have GCA is it normal to get sensations/transient aches in your head?'
The answer to this is it can be. Some people get transient low level symptoms. Mine started at 17.5mg and I had a quick initial taper like yourself. I think what is said on the forum is people can experience around 20 % of level of original symptoms - though I may be getting mixed up with PMR.
Another factor is that pred can lead to weird symptoms, including those that mimic GCA.
Also as Pro says, this can happen after vaccine which stimulates the immune system. This also happened to me as a flare.
After a bit of messing about with different consultants and anxiety on my part I stablised on 20 then resumed the guideline reduction - I would quite often have to ignore low level symptoms though. Still doing so on 4mg.
However, the question is, is it normal for you? You say they're similar to what led you to hospital in the first place, which implies they are not at a reduced level.
You have done everything right - got your bloods done, contacted helpline, you know the emergency advice, you can get onto consultant as soon as they're back. Though I agree, there should be someone else to advise, and if it gets worse, but not to the level of A&E, I would be inclined to contact them and insist on some advice.
It is very difficult not to worry about every symptom but worrying doesn't help. Be aware but not sucked in. Things will get better sooner than you think. If you haven't already, I would suggest you do a symptom diary and record your symptoms daily. This will give you a pattern over time. Information is power!
Everyone's GCA journey is person to them, which is why docs find it so hard to understand and treat. Best wishes.
Yes, very similar. Two weeks into my 4mg and after two months of no symptoms I have started with intermittent head tingles, sore spots, ear pressure and tinnitus, and scalp aches/stinging. All 2 or under pain level - just annoying, but more than what Rod Hughes would describe as flickers, I think. They went away for 3 days, then back again. You would think classic flare, but last year this happened after third covid jab on 6mg and I went up as far as 30, but symptoms only resolved when I started to taper down. I also had symptoms fourth week of 8mg to 7 and 7 to 6 but they disappeared after the taper. Go figure! I blamed the pred, but this is less likely on 4mg. I am watching how it goes but the plan, if things don't deteriorate, is to complete 6 weeks on 4 and then taper. It's a mystery.
If you have had NO symptoms at slightly higher dose then you probably should return to the last dose where you had none. It is obviously still hanging around and now you aren't on enough pred to manage it. Once you have a level at which you are pain and symptom-free, that is what youa re looking to maintain You shouldn't ever feel worse than you did there.
You are never reducing relentlessly to zero at any point - you are looking for the lowest effective dose. You are aslightly below that for now. It doesn't mean you won't get lower, just not yet.
Yes and I might end up doing that; is this likely to work without the plus-5mg seven day clear out?
However, I don't understand why things improved when reducing from 8 to 7 and 7 to 6 or why going up from 6 to 30 under RH didn't help with last flare. Do you have any theories?
Depends how much inflammation has accumulated. Only one way to find out - no crystal balls on this forum
Coincidence maybe? I don't think GCA always comes crashing into the room fully dressed and ready to roar. Like PMR it can be there for a while beforehand. And signs like that can be a warning just to slow down. Why didn't it go with the 30mg? No idea - unless some of it was too much pred masquerading? Really strange though.
Thanks, that's helpful. Only solution Rod came up with was the pred. I think it may be that for some reason increasing pred, even to levels that I had been comfy on in the past, didn't suit. So weird and unpleasant.
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