Temporal biopsies to diagnose GCA: What's your experience?

Posted by zaa @zaa, Aug 20, 2021

If you had the temporal biopsies for GCA, were you told you had to have both sides of you head done to rule out GCA? I’m now wondering if I really needed both sides of the artery tested.

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I had a biopsy in July to confirm GCA. My understanding was they needed to biopsy an artery. I went to a plastic surgeon & she went to the top of my head at the hairline for the biopsy, it was an outpatient procedure.

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@pag1949

I was just diagnosed with GCA one week ago. Just curious, what did you refuse the bone density infusion?

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Why are you getting a bone density infusion? I actually never heard of that.

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@marilynredder2367

Why are you getting a bone density infusion? I actually never heard of that.

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Last year I fell and had a compression fracture of my L2.
I did not need surgery but I wore a brace for 3 months.
Although I do not “officially” have osteoporosis, I do have osteopenia. However, my primary care doctor as well as my orthopedic doctor said that because of the fracture, technically it counts as osteoporosis. My orthopedic doctor recommended a once a year reclast infusion to strengthen the bones. ( instead of taking something like boniva, etc.) Hope this helps.

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@pag1949

Last year I fell and had a compression fracture of my L2.
I did not need surgery but I wore a brace for 3 months.
Although I do not “officially” have osteoporosis, I do have osteopenia. However, my primary care doctor as well as my orthopedic doctor said that because of the fracture, technically it counts as osteoporosis. My orthopedic doctor recommended a once a year reclast infusion to strengthen the bones. ( instead of taking something like boniva, etc.) Hope this helps.

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Yes I understand. I had osteoporosis and have been getting shots of Prolia 2x a year. I now have osteopenia. It helped. I’m on lots of prednisone for a long time. It’s also inherited from my mother.

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@marilynredder2367

Yes I understand. I had osteoporosis and have been getting shots of Prolia 2x a year. I now have osteopenia. It helped. I’m on lots of prednisone for a long time. It’s also inherited from my mother.

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So happy it helped. Take care.

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@ste44

I had one side and it came back negative, which was accurate

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I also had one side done, came back negative. Still have mild headache most days. Figure I’m stuck with it. After 15 months of prednisone, very slowly tapers down, I’m on methotrexate for the rest of my life? Debating Zometa for bone density.

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@sasserb3

I also had one side done, came back negative. Still have mild headache most days. Figure I’m stuck with it. After 15 months of prednisone, very slowly tapers down, I’m on methotrexate for the rest of my life? Debating Zometa for bone density.

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Welcome @sasserb3, Sorry you haven't been able to get rid of the headaches even though they are mild. I can't imagine haven't to add that to the other symptoms. This is an older article from 2008 but it sounds like it might be relevant to your symptoms.

"Headaches were more common in biopsy-negative GCA patients: 91% of them presented with headaches, compared to only 40% of non-GCA patients (p=0.005). Thrombo-cytosis was more common in patients with biopsy-negative GCA compared to non-GCA patients (73% and 19%, respectively, p=0.001)."
--- Negative temporal artery biopsies: eventual diagnoses and features of patients with biopsy-negative giant cell arteritis compared to patients without arteritis: https://pubmed.ncbi.nlm.nih.gov/19210879/.

I'm assuming you have been diagnosed with PMR 15 months ago. Were you started on both prednisone and methotrexate?

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@johnbishop

Welcome @sasserb3, Sorry you haven't been able to get rid of the headaches even though they are mild. I can't imagine haven't to add that to the other symptoms. This is an older article from 2008 but it sounds like it might be relevant to your symptoms.

"Headaches were more common in biopsy-negative GCA patients: 91% of them presented with headaches, compared to only 40% of non-GCA patients (p=0.005). Thrombo-cytosis was more common in patients with biopsy-negative GCA compared to non-GCA patients (73% and 19%, respectively, p=0.001)."
--- Negative temporal artery biopsies: eventual diagnoses and features of patients with biopsy-negative giant cell arteritis compared to patients without arteritis: https://pubmed.ncbi.nlm.nih.gov/19210879/.

I'm assuming you have been diagnosed with PMR 15 months ago. Were you started on both prednisone and methotrexate?

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The original diagnosis was several years ago, starting with PMR. I was put on the original dose of prednisone Fall of 2018. On seeking a specialist they raised that dose through Spring/Summer of ‘19. After titrating off Prednisone I was prescribed the Methotrexate Jan. of 2020. Now I am also dealing with Breast Cancer. So put on Letrazole. Makes me sound like a very unhealthy person. But I remain very active & try to stick to healthy foods. 🤷‍♀️

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I was told to have both sides done and I did, but it was negative. I have pains in my head quite often, but not neccessarily in the temple area, but I was also told I have small vessel disease (I think that's what they call it). I'm not on any meds for PMR. I also have small fiber neuropathy. So far haven't found a good neurologist in my area. I suffer from fatigue everyday; I have no motivation. I assume this is a symptom, but not really sure. I just live with it.

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