What are the early signs of GCA ?

[readingbooks]

Stlll fairly new to this forum. PMR for 1 year and tapering very slowly. Now 7-6 mgms Pred. Due to see rheumatologist again in December. She has said contact her if I need to, but of course I don't want to do so unless good reason. I have no problems with my medical care. BUT I am very concerned about developing GCA. I do now have an occasional very mild headache in left temple which comes and goes, some blurring of vision ( since on Pred ) and no pain in jaw on chewing. So my ? is , what will tell me I should be considering GCA ? . Many thanks.

[DorsetLady PMRGCAuk volunteer]

Hi,

I think you are probably worrying unnecessarily - only about 5% of PMR patient’s being successfully treated with Pred go on to delevop GCA. The chances obviously increase in the cases where the Pred is not working, but your treatment sounds okay.

The blurring of vision can be a side effect of the Pred. Some patients with PMR do get headaches, but your description of ‘occasional very mild headache’ is certainly not GCA!

I can assure you a GCA headache is like no other you have ever had in your life - almost like a ever tightening steel band around your head either vertically or horizontally and is usually accompanied by jaw claudication, tender scalp and neck/shoulder pains.

So please don’t worry or be paranoid about GCA, but that doesn’t mean you don’t need to be aware. Just be rational about aches and pains.

Take care

[readingbooks in reply to DorsetLady]

Thank you. Clarity ! That is exactly what I needed. As an 80 year old, obviously retired ,SRN UK and RN Canada who had never heard of these 2 diseases before, I need reassurance same a all of us. I have dialled down the anxiety !!

[DorsetLady PMRGCAuk volunteer in reply to readingbooks]

Good. Because worry will just make you live on tender hooks, but just be aware as I said. And if worried - just ask! That’s what we’re here for, not to take the place of your doctor, but to reassure when we can - or tell you to hot foot it to doctor if we can’t!

[Janstr in reply to DorsetLady]

The headache I had with GCA wasn't like that. It was more like a low grade migraine that wouldn't go away behind one eye. It went on continuously for over 2 weeks until I was diagnosed. It was accompanied with a very tender scalp, neck/ shoulder pains, & jaw claudication

[DorsetLady PMRGCAuk volunteer in reply to Janstr]

Yes there are slight differences I know, but what I was trying to impress that it’s not a “normal” headache and doesn’t recede with OTC painkillers or by itself. Plus all the other symptoms as well add up to probable GCA!

Many PMR patients worry unnecessarily about a headache- and obviously they need to be aware - but not to the point of anxiety.

Sometimes a headache is just that - a headache.

[PMRpro Ambassador]

Probably not - as DL says, the headache of GCA is like nothing else. If the headache you mention gets worse as you reduce the dose then I would say contact your doctor. And if you have ANY strange visual symptoms - whatever they seem to be - the same applies. But just be aware - not preoccupied.

[readingbooks in reply to PMRpro]

Thanks PMR Pro to you as well.

[HeronNS]

And the next time you go for an eye exam, make sure you see a professional who can examine your eyes carefully and put your mind to rest even more. Do be aware that a less common side effect of pred is increased ocular pressure so if you aren't already it's wise to be monitored for this possibility.

[readingbooks in reply to HeronNS]

Good point. Indeed, my pressure went up soon after I started on Prednisone nearly a year ago and I have been having it measured monthly by my regular Optometrist . It's good enough now that i am going every 2-3 months . As he said to me it's out of the danger zone and , of course, my dose is much lower now. Thank you.

[PMRpro Ambassador in reply to readingbooks]

If your optometrist is seeing you monthly it is likely they would see any of the changes that latent GCA can cause - and if you have any signs you can always check with them immediately.