GCA questions

[Sojourn12]

Have been experiencing headaches for the past few days (but no other symptoms) and am wondering if GCA is more likely at the beginning of one's PMR experience or can it occur any time? Am also wondering if GCA is more likely at higher doses of prednisone or lower doses? Am lastly wondering if existing, chronic eye conditions (uveitis) might make GCA more likely to occur. I have had PMR for about 3.5 years, have slowly tapered from 60 to 1.5 mg. prednisone, then creeped back up to 5 mg. pred to treat flare of uveitis. Thanks, Jane

[DorsetLady PMRGCAuk volunteer]

Hi,

Q. …wondering if GCA is more likely at the beginning of one's PMR experience or can it occur any time? A. Anytime really - doesn’t seem to be any rhyme nor reason as far as I can fathom- happy to be correct…

Q. Am also wondering if GCA is more likely at higher doses of prednisone or lower doses?

A. Any PMR dose will not be high enough to control GCA, so same answer as previously really

Q. Am lastly wondering if existing, chronic eye conditions (uveitis) might make GCA more likely to occur.

A. This link does mention connection with PMR - ncbi.nlm.nih.gov/pmc/articl...

Please get your headaches checked, may be GCA, may not, but you do need to find out.

[PMRpro Ambassador]

It can happen any time - SheffieldJane had had PMR for years, was at a low dose of pred and GCA/LVV turned up to play, It is more likely at low doses of pred - at higher doses it may well be enough to control the inflammation and you don't notice symptoms.

The GCA doesn't usually affect the eye per se - it interferes with blood flow to the optic centre and optic nerve in the brain, positioned in the occipital region of the brain, at the lower back of your head. That is a common site of headache, not necessarily in the temples as so many assume. Very rarely GCA can affect the blood flow to the retina but I don't think uveitis has any influence on that. However - very rarely uveitis can be the presenting symptos in GCA and confuses the picture:

pubmed.ncbi.nlm.nih.gov/311....

[LemonZest11 in reply to PMRpro]

I too was diagnosed with GCA/LVV once I got to a lower dose of prednisolone, 18 months after initial PMR diagnosis.

[montebello in reply to PMRpro]

Hmmmm... I'm a new GCA patient who is experiencing achy feelings at the rear of my head/neck. Almost feels like my neck muscles are spasming. When I prop up my head with my hands, the ache goes away. Never had this before. I'm at 50 mg pred. I wouldn't expect NEW GCA symptoms at this point would i?

[PMRpro Ambassador in reply to montebello]

Sounds more like muscles protesting - GCA headache doesn't tend to go away. But DorsetLady is your expert there!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Agree with PMRpro, it does sound more muscular -have you tried warmth or painkillers to see if that helps.

Would never say never, but it doesn’t sound particularly like GCA.

[Sojourn12 in reply to DorsetLady]

Do painkillers have any effect on GCA headaches?

[PMRpro Ambassador in reply to Sojourn12]

Very rarely. Even NSAIDs don't do enough against the inflammation to relieve the pain it is causing.

[DorsetLady PMRGCAuk volunteer in reply to Sojourn12]

Certainly not in my case…. never touched them.

[Grammy80]

Well, you have heard from the best.....as part of the rest and a GCA gal, I can only add that getting it checked out and off your mind is best. My best!💕

[Miacaro45]

GCA headache is like no headache you have ever experienced. It is the most excruciating experience. I had this for 4 months before I was diagnosed with GCA. I had a biopsy of the temporal artery which proved positive. I also experienced blurring of my eyesight. At that point I was put on 80 mg. Prednisone which saved my eyesight and took away the headache.

[PMRnewbie2017]

If you are worried you should ask a Dr however be prepared for a non definitive answer. I was diagnosed as ??gca nearly 5 years ago with definite pmr. No biopsy because I had been put on 30mg pred by a switched on GP and Rheumy said no point doing a biopsy 8 weeks later. Remember we all can still get a headache. Mine has only just gone after catching Covid at the end of July. We all worry about GCA but tension and stress can affect our neck muscles and cause all sorts of head pains too. Currently I'm in Spain coming to the end of a very relaxing week. Only now can I see how stressed I've been for the past 30 months. Now there's no muscle soreness, no headache........bliss.

[Sojourn12]

Thank you all for your helpful, thoughtful comments. I have blood tests and rheumatologist appointment scheduled for Thursday.