Giant cell arteritis?

I picked the wrong week to develop a new problem. I had a cold a few weeks ago and was feeling much better. But I developed a headache that was weird. It was centered at my temples. I wasn’t feeling great either. Last Friday the headache worsened and I added in a few more symptoms. I had pain and tenderness to touch on my left temple. It hurt to eat on that side, and my jaw was so tired I could barely eat, and was limiting myself to soft foods so that i could eat something.

I went in to see the coverage doctor for my gp. She strongly suspected giant cell arteritis. So she did blood work (all normal of course), and spoke to the rheumy on call. Emergency visit to get my eyes checked and temporal artery biopsy were both in order.

I had the biopsy today and will find out the results in four days or so. Eye doctor was supposed to be today but I had to prioritize the biopsy.

This has been ridiculously frustrating to not have my own doctors available until January 2 or 3. It’s also so frustrating to have one word thing after another pop up. I’ve been dealing with pericarditis for the last year, had shoulder surgery just last month. Overall I feel like my disease is well controlled, but it’s just this slow progression of damage, and weird inflammatory stuff.

What a time to need diagnosis on something rare, perplexing, and concerning! I’m glad to hear you got in for the biopsy today, and I hope it isn’t too sore and tender to enjoy the holiday period.

Please let us know how you go with the results, and in the meantime, take care of yourself.

Thanks @Jen75!

Now I just need to see if I’m well enough to drive 3 hours back and forth this weekend to see my mom. She’s recovering from neck surgery.

Thankfully the incision site doesn’t feel too bad. I’m just very wiped out from the sedation.

It explain some of the other problems you have been having While GSA is primary, it’s sort of a continuum that effects shoulders and knees. Once it’s knocked into shape with high dose steroids, they go to low dose steroids long term…that isn’t necessarily a bad thing lol.

Seriously, though hope you are better soon


The added bonus (?) of steroids is that it’ll speed up cataract development and removal. I’m ready!

Oh gosh @Stoney, scary, frustrating, and just downright ‘poo’ for you right now. Hope clarity of what’s going on comes really soon and moreover you truly do feel less wiped out too. :hugs:

Thanks poo.

It’s good to hear the incision is not too bad. Remember to take care of yourself too - maybe you could postpone your visit to your mum by just a few days? Enough for you to recover and get results? Neck surgery is not a small thing, but neither is a GCA scare.

Maybe on the cataracts, but even if you can’t see a dang thing, you ought to feel real good… LOL

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I’ve been dealing with pericarditis this last year. So for shits and giggles I was curious to see if there was any association. Somehow not surprising to find this -

Biopsy was negative. I have a follow up scheduled for next week with my rheumy so maybe we can figure out what the heck is going on.

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Does the negative biopsy that mean you do not have giant cell arteritis Stoney? Hope that is the case but very much understand the frustration & anxiety brought about by new, difficult and un-explained issues.

Yes does that mean it’s not this? Like Sybil I hope so, but then it’s back to the worry of what on earth is it? You are going through the mill presently aren’t you? I so hope answers that are more easily dealt with come soon.

Hi Stoney, great to hear the biopsy is negative. I had similar experiences due to a severe local flare up of inflammation (not seen on labs as systemic - only mild raises on ESR and CRP - still within normal range). The local flare up seemed to be within TMJ, neck, and most significantly for the headaches etc, the rheum thought my trigeminal nerve was irritated and perhaps inflamed. A week of moderate dose steroids reduced it by about 80%, though it kept returning numerous times.

Notably, it’s never returned since stopping Humira after we realised I had a reaction to it (despite a whole lotta teeth grinding since then due to stressful life events). Can you remind me if you are on a biologic?

I am on Enbrel and I feel like it’s working reasonably well.

Yes, it should indeed mean that I don’t have temporal arteritis. The big thing is that I’m less than fifty, but that alone doesn’t rule it out. This is why I need to follow up. I had to go reading studies that show that biopsy negative temporal arteritis does exist. And my symptoms definitely point in that direction, so that’s why it’s confusing.

Hi Stoney, I’m glad to hear the Enbrel is still working well. Although it is extraordinarily unlikely (and you haven’t mentioned a similar constellation of other symptoms I had with my probable reaction to Humira), I suppose if you cannot find any other cause, it may be worth a brief discussion with your Rheumy about that possibility.

Have you at least got rid of the headaches by now? Tried some steroids or something else to try to settle the symptoms? Hope it is feeling better :grinning:

Followed up with my rheumy today. She indicated that inflammation in my tmj could indeed be the cause of all that, and this flare did indeed follow being sick. We’ll hit it with an anti-inflammatory and see how much improvement I get from that.

Hoping you get a good result from the anti-inflammatory.

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Glad to hear some possibilities being worked on, and hope the anti-inflammatories give you some relief.

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