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PMR/GCA patient asking about headaches
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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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?
I have not discussed yet.. I do have an appointment with Nevada rheumatology tomorrow.
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1 ReactionI 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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5 ReactionsThank you.
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1 ReactionYes, 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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2 ReactionsAs @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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2 ReactionsThank you! I will keep track.
How did you know you had GCA? I had a negative right temporal artery biopsy. My doc told me he "doesn't think have GCA". However, I have have intermittent head pain from time to time. On 5mg Prednisone currently and will start Kevzara soon. I was diagnosed one year ago.
Welcome @jasharum, You might find the following discussion helpful.
-- Temporal biopsies to diagnose GCA: What's your experience?
https://connect.mayoclinic.org/discussion/gca-biopsies/
If you haven't seen a rheumatologist, you might want to check with one. Does your intermittent head pain occur on both sides of your head? Have you had any eye problems?
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1 ReactionI do see a rheumatologist. He's the one that said "I don't think you have GCA".
My intermittent head pain occurs in all areas of my head. Recently , my rheumatologist decreased my prednisone from 6mg to 5mg, and 5 days later I had bilateral temporal pain, and frontal head pain. But went away. I am also followed by my eye doc very closely. He ordered an MRI which was negative for tumor, etc. I felt like I was having some double vision, but maybe it was due to anxiety (I'm thinking). I relayed this to him.