1. < Polymyalgia Rheumatica (PMR)

PMR/GCA patient asking about headaches

Posted by scottschooley @scottschooley, Apr 13 10:58pm

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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jasharum | @jasharum | May 3 4:43pm
In reply to @jasharum "I do see a rheumatologist. He's the one that said "I don't think you have GCA"...." + (show)
@jasharum

I 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.

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I also have an area on top of my head that is tender, and noticed it several months before PMR symptoms started. I asked my "hair dresser" to check my scalp and she didn't see anything. I have reported this to my rheumatologist but he doesn't seem concerned. I saw dermatologist the other day, she said it may be a little red and ordered some drops. Tenderness is still there after 2 weeks of drops to the area.

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babycakes1968 | @babycakes1968 | May 5 2:36pm
In reply to @johnbishop "Hello @scottschooley, Welcome to Connect. The headaches and symptoms moving around and behind the eyes seem..." + (show)
@johnbishop

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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I have GCA and PMR , YOUR SYMPTOMS are right on the diagnosis for both. Eye specialists are an important part of your treatment. Rheumatologist treats GCA because it’s autoimmune SO IS PMR. ON MY 4th month of IV Actemra.I didn’t not feel great , just a small improvement. I have head aches daily also. I call my “ hit the in the head with a hammer headache”😣 sympathize with you. It’s like an endless Roller Coaster , Dr. try to help but it’s so complicated. Wish you well

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scottschooley | @scottschooley | May 5 4:15pm
In reply to @babycakes1968 "I have GCA and PMR , YOUR SYMPTOMS are right on the diagnosis for both. Eye..." + (show)
@babycakes1968

I have GCA and PMR , YOUR SYMPTOMS are right on the diagnosis for both. Eye specialists are an important part of your treatment. Rheumatologist treats GCA because it’s autoimmune SO IS PMR. ON MY 4th month of IV Actemra.I didn’t not feel great , just a small improvement. I have head aches daily also. I call my “ hit the in the head with a hammer headache”😣 sympathize with you. It’s like an endless Roller Coaster , Dr. try to help but it’s so complicated. Wish you well

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Thank you! I was thinking I was alone with this system. Hopfully some Doc. somewhere will find an answer. Let me know if you find relief and I will do the same. Right now I'm taking tylenol.

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scottschooley | @scottschooley | 5 days ago
In reply to @jabrown0407 "Yes, I know. But your description describes behind your eye and GCA is about inflammation (i...." + (show)
@jabrown0407

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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Sorry for the late reply. I have talked to my rheumatologist and he wasn't helpful or for that fact didn't seem concerned. My Primary Dr. Sent.me to an optometrist and they looked at my eyes and am keep me co.ing in about every six weeks. I still get headaches every day. Thank you for your input.

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scottschooley | @scottschooley | 5 days ago
In reply to @jasharum "How did you know you had GCA? I had a negative right temporal artery biopsy. My..." + (show)
@jasharum

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.

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I also had the biopsy. It was negative but my Dr. Asked me if I wanted to treat it because I have all the systems and I said yes.

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scottschooley | @scottschooley | 5 days ago
In reply to @johnbishop "Welcome @jasharum, You might find the following discussion helpful. -- Temporal biopsies to diagnose GCA: What's..." + (show)
@johnbishop

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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Yes on both sides and mostly sinuses. I see eye Dr. Every 6 weeks or so. I also talked to my rheumatologist about them. He didn't seem to have an answer.

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scottschooley | @scottschooley | 5 days ago
In reply to @scottschooley "Thank you! I was thinking I was alone with this system. Hopfully some Doc. somewhere will..." + (show)
@scottschooley

Thank you! I was thinking I was alone with this system. Hopfully some Doc. somewhere will find an answer. Let me know if you find relief and I will do the same. Right now I'm taking tylenol.

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I have to take tylenol every day and sometimes up to 10. I told my rheumatologist and he said I was going to ruin my liver. But I haven't found a cure yet. Thanks for your reply.

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