1. < Polymyalgia Rheumatica (PMR)

PMR/GCA patient asking about headaches

Posted by scottschooley @scottschooley, 6 days ago

I was diagnosed in December 2024 with PMR/GCA I have tapered down from 48 mg. Methoprednosone to now at 12mg. an on my 2nd week of Actemra shot. My question and concern is I get headaches usually three times a day or more. These headaches seem to be only the size of a silver dollor and will move from behind my eye to somewhere else on the front part.of my head. Yes they will move. I don't feel them move but notice them in a different spot . They also are short lived too only lasting 2 to 5 minutes. Less often I get bad frontal headaches that will go 6 hours ish. Does anyone have this symptom and what did you find out??? I am also on blood thinner Eilquis. Thank you for any responce.

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Mentor
John, Volunteer Mentor | @johnbishop | 6 days ago

Hello @scottschooley, Welcome to Connect. The headaches and symptoms moving around and behind the eyes seem like they could be a serious GCA symptoms. @jabrown0407, @tsc and others have discussed headaches in other GCA discussions and may have some experience or information to share with you.

Have you discussed the symptoms with your rheumatologist or doctor?

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scottschooley | @scottschooley | 6 days ago

I have not discussed yet.. I do have an appointment with Nevada rheumatology tomorrow.

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jabrown0407 | @jabrown0407 | 6 days ago

I would suggest you call your opthomalogist about this problem. Your vision is at risk when you have GCA and please don't take any chances with. Once damage is done it can not be reversed. You can lose all or part of your vision simply for waiting. My opthomalogist gave me her private number JIC. Never used it. As long as the office is open, leaving an urgent msg should work.

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1 reply
scottschooley | @scottschooley | 6 days ago
In reply to @jabrown0407 "I would suggest you call your opthomalogist about this problem. Your vision is at risk when..." + (show)
@jabrown0407

I would suggest you call your opthomalogist about this problem. Your vision is at risk when you have GCA and please don't take any chances with. Once damage is done it can not be reversed. You can lose all or part of your vision simply for waiting. My opthomalogist gave me her private number JIC. Never used it. As long as the office is open, leaving an urgent msg should work.

Jump to this post

Thank you.

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jabrown0407 | @jabrown0407 | 6 days ago

Yes, I know. But your description describes behind your eye and GCA is about inflammation (i. e. swelling, pressure) near your eye that strangles nerves. My advice is to let your opthomalogist weigh in. That's all.
I wish you success on your journey, no two are alike.

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Teri | @tsc | 6 days ago

As @jabrown0407 pointed out, GCA is strange in that those who have it may experience different symptoms. I had it once, then relapsed and my symptoms were different both times. I had a tender scalp, sharp, shooting pains from my ear to my nose (one day I counted 25), and visual disturbance in my right eye (could only see white) three times.
Second time around, it was extreme pain in my neck and up my head, like pressure or tightening. I was fortunate to not lose any vision. I experienced loss of appetite both times and a tender scalp.
It's helpful to document everything so you can give your doctor an accurate account.
Good luck, @scottschooley!

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1 reply
scottschooley | @scottschooley | 6 days ago
In reply to @tsc "As @jabrown0407 pointed out, GCA is strange in that those who have it may experience different..." + (show)
@tsc

As @jabrown0407 pointed out, GCA is strange in that those who have it may experience different symptoms. I had it once, then relapsed and my symptoms were different both times. I had a tender scalp, sharp, shooting pains from my ear to my nose (one day I counted 25), and visual disturbance in my right eye (could only see white) three times.
Second time around, it was extreme pain in my neck and up my head, like pressure or tightening. I was fortunate to not lose any vision. I experienced loss of appetite both times and a tender scalp.
It's helpful to document everything so you can give your doctor an accurate account.
Good luck, @scottschooley!

Jump to this post

Thank you! I will keep track.

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