Headache in back of head possible symptom of GCA?

Posted by wedgyjackson @wedgyjackson, Oct 20, 2023

I have not been diagnosed with PMR but highly suspect I may have it. The first rheumatology fellow I saw dismissed all autoimmune and rheumatoid issues very quickly. I scheduled a new appointment with my PCP to look further into my problems. Last night I developed a really nasty headache while sleeping. I would best describe it as a cross between a stiff neck and headache.

Is it possible a headache indicating GCA can present this way as opposed to the temple area? I have exhibited no obvious jaw pain or vision problems.

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I have been diagnosed with PMR and GCA the end of January. I went down to 2.5 mg of Predisone and had a flare up so I am now on 5 mg of Predisone. I am getting head and neck pains every night. It is very intense.
I take Tylenol 8 hour for arthritis pain and that helps.

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Hi @wedgyjackson, I had symptoms of pain and stiffness throughout my body, PMR, not diagnosed. Then I had a very stiff neck with pain extending to the back of my head on the left and right sides. Also a tender scalp, when I touched it, dry cough that started in the evenings, terrible fatigue, and an itchy torso for a couple of weeks, at night, no rash. I had short stabbing pains from my ear to my nose on the right side of my face, and problems seeing out of my right eye a few times. The symptoms came and went, but the neck/head pain was constant. I was diagnosed with GCA following a temporal artery biopsy and started on 40 mg prednisone, tapering down 5 mg every two weeks, then less when I was at 10 mg. I've been off prednisone about a year. I still get neck and shoulder pain, but it's due to rotator cuff problem and arthritis.

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@tsc

Hi @wedgyjackson, I had symptoms of pain and stiffness throughout my body, PMR, not diagnosed. Then I had a very stiff neck with pain extending to the back of my head on the left and right sides. Also a tender scalp, when I touched it, dry cough that started in the evenings, terrible fatigue, and an itchy torso for a couple of weeks, at night, no rash. I had short stabbing pains from my ear to my nose on the right side of my face, and problems seeing out of my right eye a few times. The symptoms came and went, but the neck/head pain was constant. I was diagnosed with GCA following a temporal artery biopsy and started on 40 mg prednisone, tapering down 5 mg every two weeks, then less when I was at 10 mg. I've been off prednisone about a year. I still get neck and shoulder pain, but it's due to rotator cuff problem and arthritis.

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Thanks @tsc. I haven't experienced the scalp tenderness ,vision problems or the sharp pains but the rest of your symptoms match mine to a tee. I have an appointment with my PCP next week and will definitely mention GCA. The loss of vision possibility is indeed worrisome. I really appreciate your response.

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@wedgyjackson

Thanks @tsc. I haven't experienced the scalp tenderness ,vision problems or the sharp pains but the rest of your symptoms match mine to a tee. I have an appointment with my PCP next week and will definitely mention GCA. The loss of vision possibility is indeed worrisome. I really appreciate your response.

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Hi @wedgyjackson , have you also noticed a lack of appetite? I lost about 15 lbs when sick. The fatigue is caused by anemia - the anemia of chronic inflammation. It went away after appropriate dosage of prednisone. My PCP told me he missed the diagnosis of PMR because I didn't present as textbook. Nine months later, when I was positive for GCA, my inflammatory markers (bloodwork) were off the charts. Then he ate a little humble pie.
Good luck, I hope your PCP is supportive, curious and refers you to a good rheumatologist.

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Yes, please do not ignore. My headaches were around back of head so painful I could not put head on a pillow. Test showed Sed rate of 67. I had the biopsies a few weeks later,both sides which proved I had GCA.

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@tsc

Hi @wedgyjackson , have you also noticed a lack of appetite? I lost about 15 lbs when sick. The fatigue is caused by anemia - the anemia of chronic inflammation. It went away after appropriate dosage of prednisone. My PCP told me he missed the diagnosis of PMR because I didn't present as textbook. Nine months later, when I was positive for GCA, my inflammatory markers (bloodwork) were off the charts. Then he ate a little humble pie.
Good luck, I hope your PCP is supportive, curious and refers you to a good rheumatologist.

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No loss of appetite for me. If I do end up getting diagnosed with PMR, my case will be also not be textbook. Sed rate normal and CRP only slightly elevated. My ANA came back positive so that is the reason I was able to get referred to rheumatologist. Unfortunately, my first and only appointment was with a fellow and I feel like he gave up too quickly when the specific tests for the common autoimmune diseases came back negative. I do trust my PCP and feel like she will listen to me and make sound decisions on possible tests and treatments.

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@tsc

Hi @wedgyjackson, I had symptoms of pain and stiffness throughout my body, PMR, not diagnosed. Then I had a very stiff neck with pain extending to the back of my head on the left and right sides. Also a tender scalp, when I touched it, dry cough that started in the evenings, terrible fatigue, and an itchy torso for a couple of weeks, at night, no rash. I had short stabbing pains from my ear to my nose on the right side of my face, and problems seeing out of my right eye a few times. The symptoms came and went, but the neck/head pain was constant. I was diagnosed with GCA following a temporal artery biopsy and started on 40 mg prednisone, tapering down 5 mg every two weeks, then less when I was at 10 mg. I've been off prednisone about a year. I still get neck and shoulder pain, but it's due to rotator cuff problem and arthritis.

Jump to this post

Any signs of loss of vision don’t wait. Get on high doses of steroids. Vision loss doesn’t necessarily come at once. It may start slowly and then one day it’s gone. Get on higher doses NOW

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I was diagnosed June of this year with GCA. I didn't have the biopsy but the ordered blood work signified the diagnosis. I was placed on 60mg of Prednisone and Actemra injection via EpiPen. Had headache in temple, thru left side of temple, face and nose. Also have experienced pain in the back of head too. I've recently had cataract surgery and waiting to see if the eye vision gets better. I am on10mg of Prednisone and weekly injection and I' ve been good. I also feel I have PMR too but haven't been tested. I was told by my Rheumatologist that sometimes the biopsy can be a false positive. She keeps up with the blood tests. I hope this helps but I'm with all of you and it truthfully sucks.

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@marilynredder2367

Any signs of loss of vision don’t wait. Get on high doses of steroids. Vision loss doesn’t necessarily come at once. It may start slowly and then one day it’s gone. Get on higher doses NOW

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Thank you for the advice. I will definitely bring this up to my rheumatologist and opthalmologist. Happy that you're doing better.

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@marilynredder2367

Any signs of loss of vision don’t wait. Get on high doses of steroids. Vision loss doesn’t necessarily come at once. It may start slowly and then one day it’s gone. Get on higher doses NOW

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A doctor who suspected I had GCA, told me to go to an Emergency Room as soon as possible if I had any problems with vision.

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