is it possiable to get GCA on the other side of your head,had it on the right side,am getting headache on left side.

[Flosy]

just wondering if it is possiable.

[PMRpro Ambassador]

No reason why not - it is very unlikely to only be in one temporal artery but that is where they look as it is easy to get at. It can be in any artery in your head or trunk.

[DorsetLady PMRGCAuk volunteer]

Hi

GCA pains are normally bilateral - are you say initially you only had it on one side?

The pain you have now may be the beginnings of a flare - what dose are you on? And can you give us a bit more information on how you have been reducing.

[Flosy in reply to DorsetLady]

Hi,dorset lady.i am 10mg,due to gone to 9mg.tomorrow,been reducing since March 2020.it's only in the last month that I been getting these headache.yes I did have it on the right side.thank you.

[DorsetLady PMRGCAuk volunteer in reply to Flosy]

If you’ve reduced from 60mg to 10mg since March then you’ve probably got to the level that you shouldn’t go below......despite what your doctor/tapering plan may say.

In fact if you’ve had headaches for the last month, you've gone below dose required.

I suggest you don’t reduce until you have spoken to doctor treating you - and explain you are having a flare.

If you can recall the last dose you were okay, you need to tell doctor that as well.

Usual advice is to add 5mg to that dose for at least a week to get the flare under control. It’s usually okay to drop back down to dose just above the one that gave you issues - but in your case I wouldn’t be in too much of a rush - your GCA has a long way to go.

[pinks33]

From my own experience a headache pointing to a GCA flare can be very different from the original headaches. Before diagnosis I had excrutiating pains at the back and base of my scalp, mostly right side, and in and around my right ear. I recently had a bad flare with just a mild forehead pain now and again. My flare was picked up in a routine blood test. I never suspected a flare because it felt so different this time, but I have learned the unpredictability of this disease and the need to be ever vigilant. Your headache may not be GCA, but if it persists I would try to get a blood test to confirm.

[brambles22]

I'm being treated for GCA.

My headache started as a general throbbing pain. It developed into throbbing pain plus sudden sharp, electric shock type pains shooting down from my right temple. The sharp pains then developed on the left temple, so I ended up with pain on both sides. I also suffered from flu- type general aches and pains and a lack of sleep . Everytime I dosed off , the sharp headache pains would wake me up, within an hour or so.

I was sent to hospital where they spent two days investigating. They did a brain scan and took a sample of the fluid from my spine, to rule out meningitis. Fortunately there was a rheumatoligist on duty, who suspected GCA. My GP also suspected it as well when he referred me to the hospital, but he didn't tell me that - he suspected other conditions too. I was given a large dose of steroids in the hospital on the second day and it killed of the severe headaches in one fell swoop.

Now on a reduced dosage and headaches still absent but now suffering from steroid side-effects: befuddled thinking and inconsistent sleep patterns. Apart from that I'm functioning fairly well.

I have a feeling only my left temple is affected now. I have very mild throbbing sensations in the left temple area ocassionally, but nothing I can't cope with. There's nothing going on in the right temple area.