Is it GCA?

[ScaredDcat]

I have recent left temple tenderness that is tender to the touch and especially hurts when I yawn or open my mouth wide. Also, my jaw gets mildly sore easily. (usually from chewing). No headaches, really, but random tender spots that come and go. SED was 45 when this first started a couple of weeks ago, but quickly went down to 28. (I had no treatment so don't know why it decreased). These are my only symptoms, but because of what I've read on Google regarding the correlation between jaw and temple discomfort, I'm wondering if this sounds like GCA?

[DorsetLady PMRGCAuk volunteer]

it’s certainly a possibility so need needs further investigation. But the jaw by itself could be a TMJ/TMD issue - this is just one link, there are plenty more online -

webmd.com/oral-health/guide...

However the temple connection may point to GCA, but strange you do not have any other symptoms…so please follow it up..although a bit more info about yourself might help us to give a better idea…

[ScaredDcat in reply to DorsetLady]

Thank you all for yoyr reply. I'm not entirely sure how to navigate this site, so hopefully this message will go through. I have seen my Primary Care Physician and also a Rheumatologist about this. and neither one thinks that I have GCA. The Rheumi says I would be feeling sick or have a bad headache, which I don't. My health history includes fibromyalgia, some ostepenia/ arthritis,, among other irrelevant things. I am a 72 y.o female. Last August 1st, I woke up and things were blurry. It was a brief episode, but enough to get my health anxiety wheels turning. I quickly assumed that I had GCA. ( my Dad had it during his final weeks, so I knew a little bit about it). So...I saw my Primary Dr., went to the ER fir an MRI, saw my Rheumatologist and the Opthamologist. No one felt that it was GCA. The Opthamologist did a thorough exam and diagnosed Dry Eyes. So now...nearly 7 months later, when I have tenderness/mild pain in my temple I'm back to thinking about GCA.

[DorsetLady PMRGCAuk volunteer in reply to ScaredDcat]

you’ve navigated it successfully…😊

And it can take time for the headaches to come, for me [undiagnosed a long time]…., it was probably a year or more after first symptoms…but I did have other aches and pains and felt very wiped out [so Rheumy is partially correct].

Dry eye can make your eyes blurry, but certainly don’t dismiss GCA entirely, and I don’t think it’s unreasonable to follow it up with Rheumy and ophthalmologist- a log can happen in 6 months.

[ScaredDcat in reply to DorsetLady]

Due to my health anxiety, Rheumatologist is willing to order a temporal biopsy, but she has stressed that it's my choice and that her suspicions of my having GCA are low.

[DorsetLady PMRGCAuk volunteer in reply to ScaredDcat]

Well maybe look down the TMD/TMJ route then - that can also cause headache issues.

You obviously don’t want a biopsy unnecessarily….so maybe park that for the moment as look for other causes.

[ScaredDcat in reply to DorsetLady]

Thanks for your input. What a great informative group this is! I've really needed to talk about these symptoms 'cuz Google doesn't answer my questions as well as people who have act experienced it.

[ScaredDcat in reply to ScaredDcat]

*actually

[PMRpro Ambassador in reply to ScaredDcat]

The biopsy isn't a certain answer either - and once it has been done, there isn't a second chance. I'd put it off until there is something more definite.

[ScaredDcat in reply to PMRpro]

Good point! The Rheumi suggested that maybe it's just a tension headache, since the temples are a likely spot for that, but having it on just one side seems unlikely I would think. Also, I doubt that it would always be present if that were the case. It's very mild... not even bad enough to warrant taking a Tylenol, but it concerns me because it's always present.

[ScaredDcat in reply to PMRpro]

I also wonder about the brief, sharp little pains that I get in random spots on my head. I notice that now that I'm thinking GCA, I'm tuned in to every sensation or mild discomfort of any kind having to do with my head.

[jojammum in reply to ScaredDcat]

Hi , I've only just been diagnosed with pmr(a week) and started on 15mg pred. But I noticed a mild ache in my left ear and mild headache on left. Went to optician, all was ok but said I should see gp. Also noticed mild tingling/numbness in nose across cheek and numb around left ear and sometimes weird feeling in scalp. Found had blocked ear with earwax. However dull ache around ear remained constant. saw gp who has put me on 40mg, esr down to 34. Being referred to rheumie just in case.worry about gca sent me to gp don't know if I'll know for sure what it is.

Also comments on this site to be better safe than sorry.

Don't know if repeated up visits to different GP 's help, get different advice.

[Karenjaninaz in reply to jojammum]

Ear pain can also have. a dental cause.

[arvine in reply to ScaredDcat]

Just wanted to add, when I had some of these symptons couple mos ago, tender scalp, temples hurt to touch, jaws hurting when chewing etc, no headache, my rheumatologist sent me for ultrasound, on the temples etc, I have read also this is a more effective test, as biopsy may not find the inflamed area? something to ask about

[ScaredDcat in reply to arvine]

What were the results of the ultrasound?

[arvine in reply to ScaredDcat]

Oh negative, even with inflammation markers, raised, so then went for MRI, showed subacute stroke, apparently happened in previous 6 mos, never had any indication of after affects from such, so now, have to get catscan done -on neck arteries, and then appt at stroke clinic, one thing aftr another very disturbing, frustrating, depressing, don,t really know what, s going on with me this last year,

[ScaredDcat in reply to arvine]

And they're saying that the temple pain and sore jaw was the result of a stroke?

[Hidden in reply to ScaredDcat]

Those were my symptoms too a few months ago. Side of head hurt to touch, jaw ache and left temple was tender. I was taking 5mg at the time and increased to 10 to be on the safe side for a few days, then took 9.5, 9, 8.5, 8 until I arrived at what I am now taking, 6mg for the foreseeable. Everything okay at present. Hope you’re too

[PMRpro Ambassador]

ESR/SED is a very non-specific tests and rises with many things, even just a cold. It could be GCA but like DL, I'd think a jaw problem is more likely. But do speak to a doctor and/or dentist

[Missus835]

Hi ScaredD. Diagnosed with PMR Jan 2022 and put on 20 mg Pred at that time which I was reducing and got to 11 and back up to 14 after a long bout with the flu in Nov/Dec 2022 (which may have kicked all this off). Saw my Rheumy twice since then but was originally diagnosed by a Neurologist (here in Nova Scotia). I recently (Jan 21) began experienced jaw, mid shoulder blade and weird pain above each temple; not actual headaches. Went into the ER on Jan 21 and the Resident gave me a good workup. They reached out to the Rheumy on call (not mine) and she put me up to 60 mg. Pred. My vision, although not blurry, had become such that I had to move in about a foot closer to the computer monitor. Quickly was referred to Ophthamology and they saw no significant change in my vision, optic nerve and only a small growth in the cataracts. I have a follow-up end of February.

Next day had a temporal biopsy, which ended up being "inconclusive". I finally saw my Rheumy who figured because it was inconclusive it would be a good time to start reducing the Prednisone - from 60 to 50 mg. All pain returned with 2-3 days. Called their nursing station and they were not allowed to say "you know where your pain was controlled". So I went back up to 60 mg. which is ALMOST taking care of the pains. So about a month at 60 mg.

Last week I went into my dentist because I had been having such pressure in my head, especially between my ears which was causing deafness in my left ear and still is. A lot of tinnitus as well. Dentist finds that my TMJ/TMD is now acute and I need bite appliances, which should arrive in approximately two weeks; sooner would be better.

In my gut I feel that this is GCA and the TMJ/TMD is more acute due to muscle weakness in the jaws and the edema that Prednisone causes (moon face). The dentist agreed. Have not been able to get in touch with Rheumy. Had bloodwork done one week ago at my own behest, because I needed to find out what the SED and CRP were. Still don't know.

The only time I've been this fatigued and I mean crashing for two hours after a trip to the store, that I can recall, is when I went undiagnosed for PMR for 5-6 months in late 2021. Now I'm at the point where I've had to go on Unemployment sick benefits which have not kicked in yet; an added stressor.

Most mornings start out well, then the weakness kicks in and on many days have to just go and sit, or even go back to sleep. Some fluttery heart issues. Either my heart flutters or literally skips a couple of beats and then miraculously kicks back in. Am I concerned? Yes, because I'm the type of person who needs facts with which I can deal and not the "maybe it's not". Thanks be to the gods for this forum, because I certainly am stuck between the medical system rock and a hard place. I hope this helps and I do believe you are very wise in not letting this go. That trip I took to the ER very possibly saved my eyesight.

Hope this helps. Sorry for running off at the mouth like a soup sandwich.

[Karenjaninaz in reply to Missus835]

prednisone depletes Mg which is involved with heart rhythm. I normally take about 300mgm Mg glycinate or Mgcitrate. Daily. This calms the palpitations quickly. I notice antihistamines predispose me to palpitations as well.

Retired nurse anesthetist here.

[Missus835 in reply to Karenjaninaz]

Magnesium? Yes I'm going to try it. Also I've been on antihistamines for my ear/head pressure (which help a little). Thank you for reminding me about Magnesium.

[Hrblock57]

Did your CRP go up also ?

[ScaredDcat in reply to Hrblock57]

My SED rate went up, but then back down to normal. CRP was never elevated.