I’m 42 Doc thinks I have GCA. Need help. - PMRGCAuk

PMRGCAuk

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I’m 42 Doc thinks I have GCA. Need help.

JustWantToBeHealthy profile image

2 episodes of what my doctor thinks is due to vasculitis but I have no official diagnosis because the RA is booked out till the end of February. In Nov I had pain in the area of the left neck carotid. Went to ER. CT showed mural thickening at the carotid bifurcation. CT showed no large vessel occlusion or significant stenosis. No evidence for vascular malformations. No acute intracranial findings. CRP 7.5 mg/L and ESR 25 mm/hr. Went home and took ibuprofen and symptoms went away after a couple days. Had a follow up visit 2 weeks later where bloods were checked and ESR was 13 mm/hr and CRP was 7.6 mg/L.

Fast forward to the last week in Dec and started having pain in the left side of my head right above my ear. Hurt like a bruise to touch it. No pain when not touching it. Headache is going on 7 days now with a day or so in between where it was almost gone. I’ve also had dizzy/drunk/lightheaded feeling, derealization, fatigue, and slight weak and shaky feeling. Doc first thought was TAK Arteritis but wants me checked for Giant Cell Arteritis. Additional bloodwork in the ER showed extremely low potassium and they gave me a dissolvable potassium tablet to drink and it came back up. My most recent bloodwork shows very low sodium at 134 mmol/L.

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JustWantToBeHealthy
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2 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

You may have GCA, you may not… but if Ibruprofen helps then I would want a bit more evidence, albeit that some sounds very GCA-ish… It did zilch for mine…

Please keep us informed….

PMRpro profile image
PMRproAmbassador

A sodium of 134 is not "very" low, it is barely out of normal range 135-145, and increasing your potassium may have led to your body lowering the sodium a bit and it overcorrected.

TAK and GCA are very similar except TAK affects more organs.

You say you need help - what sort? You will have to wait for the specialist I fear to get a more definite diagnosis and only then will you really know what help is appropriate. There are things there that could be GCA - but they could be other things too.

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