Is this GCA?: Over last 21 months have slowly... - PMRGCAuk

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Is this GCA?

granofthewest profile image
16 Replies

Over last 21 months have slowly tapered down from 20mg to 1mg following Dorset Lady's plan. I'm now in the 3rd week of tapering from 2mg to 1mg. Spoke to GP in June and she said to make appt to see her when down to 1mg, have telephone appt on Tues. However I have had a headache on and off for last 4 days, its like a burning scalp pain in the top of my head. How concerned should I be?

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granofthewest profile image
granofthewest
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16 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

A new headache is always concerning - whether it’s GCA or not. If there anyway you can speak to her earlier? Or GP?

I would be inclined to stop the taper where you are and go back to 2mg to see if that makes any difference. Have you had any other strange symptoms recently?

It’s a very fast taper.

Obviously if headache increases or if you get any sight issues then seek urgent attention.

It may be something innocuous, but it does need checking.

granofthewest profile image
granofthewest

Thank you for the advice. My GP isn't in now until next week. I will take your advice and keep to 2mg until I get chance to speak to her.

SnazzyD profile image
SnazzyD

I’d be seeking medical advice as it’s been a few days. Whilst neck tension can do this for sure, other things need to be ruled out. If it’s shingles for example, antivirals work best started early as possible. Of course GCA is a thought too. Any other symptoms?

granofthewest profile image
granofthewest

Thankyou, I've had shingles before and have had the vaccination so don't think it's that. No other symptoms, had a slight stiff neck but that's ok now, just this headache. If I still have it tomorrow I'll ring the surgery again.

PMRpro profile image
PMRproAmbassador in reply to granofthewest

Have you tried ordinary painkillers? If they help it most likely isn't GCA.

cycli profile image
cycli in reply to granofthewest

Can confirm what PMRpro said. Only pred seems effective for a GCA head pain. Any slight increase in eye pressure at back of eyes or stiff jaw when eating ? also early signs.

Nursey30 profile image
Nursey30 in reply to granofthewest

Have you had your BP checked recently? Or do you already ready suffer with a high BP?? Could be that .

granofthewest profile image
granofthewest in reply to Nursey30

No I have only had telephone consultations with GP so no blood pressure monitored.

Nursey30 profile image
Nursey30 in reply to granofthewest

Constant headaches are a sign of high BP.I would try to get it checked just to rule it out.The pred and pain relief will be making the pain.The nurse will see you at your practice to do this I'm sure.We nurses have been seeing patients unlike the GPs.

granofthewest profile image
granofthewest

I upped pred dose back to 2mg plus took paracetamol before bed so it's hard to say what worked but alot better this morning. Thankyou all for your help and support.

jinasc profile image
jinasc

Try this it might just help, Spread your fingers through your hair and gently tug all over - this action releases the tension in the little muscles which is attached to each hair - think 'roots'.

This acts a bit like Shiatsu and my hairdresser told me to use it, as all his employees where taught to do this action for hair washes.

granofthewest profile image
granofthewest in reply to jinasc

Will certainly try this, thanks.

beethovenite profile image
beethovenite

I got down to 6mg of prednisolone in July before having to go up to 40mg as my headaches came back and needed a swift check. Rheumatologist says no lower than 20mg for some weeks. A nuisance to have the side effects all over again like dizziness and tiredness but better than the headaches would be.

granofthewest profile image
granofthewest

My headache has gone at last after going back to 2 mg. I asked GP if my dizziness could be related to my PMR, she said it was unlikely.

granofthewest profile image
granofthewest

Had GP consultation . She confirmed that as headache not frontal, no nausea or sight problem then unlikely to be GCA. Still wants me to continue slowly tapering. Headache in top of head still with me every morning but suggests ibuprofen (which does work) and to get back to her if symptoms change or if the headaches don't go on their own. Thank you for all your help everyone. So back to DL tapering plan then.

PMRpro profile image
PMRproAmbassador in reply to granofthewest

Why on earth are they so fixated on frontal headache! A common place for GCA headache is in the occipital reagion - at the BACK of the head, where the "knowledge bumps" are. At least yours is on the top and responds to ibuprofen ...

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