GCA and Earache

[kalgoorlie]

GCA and earache

Hello you lovely people!

Having been off pred for PMR since July 2023, after a near perfect tapering program since January 2022, according to NHS guidelines, I thought I would not be needing to post in this forum again. However, I did keep my membership going just in case!

And the ‘just in case’ scenario has just happened.

3 weeks ago I had earache in my right ear, waited a few days for it to go away on its own, but it didn’t and I developed a fever.

So after one week I went to my GP who saw that my right eardrum was very red, and prescribed a 7 day course of the antibiotic clarithromycin (I’m supposedly allergic to penicillin..). Also beconase spray.

Over the following 3 days I slept solidly, emerging on the fourth day without a fever but with new pain all around my face – around neck, jawline and up to temples, headache, had tinnitus, glands up in neck and preauricular lymph node very painful, and still with earache – muffled, dull pain inside my ear but hearing OK. Right side much more painful than left, but niggling in left.

I went back to GP the following day – saw a different GP as this was a same-day triage for immediate appointments. My eardrum was no longer red and he diagnosed eustachian tube dysfunction and sent me away with paracetamol and codeine, continue with beconase, told me to use otovent (a balloon you blow up with your nose to clear tubes). I still had one more day of antibiotics to run and he decided not to prescribe more.

Nevertheless, despite the otovent clearing my ears, all the symptoms continued – glands up in neck, preauricular lymph node up and hurting, earache, jaw pain when chewing, tired, headache but not severe, slightly tender around temples but no throbbing. Hearing and eyesight fine. I found myself waking early morning in great discomfort and applying hot compresses all around my face. Paracetamol and codeine helped a bit but I had a niggling feeling that this didn’t seem right, I know my body. I was very tired, jaw hurt when chewing and was losing weight. I was eating only yoghurt and soup. So I went back to the GP one week later (yesterday) and asked them whether this could be an autoimmune response and perhaps the start of GCA, considering my history of PMR. The GP initially thought another course of a different antibiotic might help, despite my eardrum looking normal, but decided to confer with another GP. They made the decision to put me on 60mg pred straight away as a precaution, and took bloods.

The result today after only one dose is that the pain and discomfort has all but disappeared.

The result of the bloods came through this morning, a GP who is knowledgeable about GCA phoned me. ESR normal but CRP up at 39. He has advised continue with 60mg pred for now, and have to see him on tues to assess and discuss.

While I am really happy that the pred is working so quickly, my question to him was can we be sure this is GCA, in which case I will be on pred longer term with tapering etc, or could this be an ear/other condition that may respond to short-term treatment with pred. He seems to think this is GCA, albeit milder symptoms caught really early, also considering history of PMR, and raised CRP.

I wonder if you know of similar related ear issues with GCA? Are my symptoms above familiar to anyone?

I am now on pred so is it now difficult to be 100% sure it is GCA? Is GCA usually worse in the early morning like PMR is? I agree with their decision to put me on pred as better safe than sorry, but just wondering if it could be another issue that responds to short term pred treatment rather than GCA. I do not have any PMR symptoms which is good, whereas I had only PMR last time. Do you think it sounds like GCA albeit without severe throbbing and no vision issues? Thoughts most welcome!

Thank you!

[DorsetLady PMRGCAuk volunteer]

GCA and ears - study done a few years ago shows a definite link, and GCA doesn’t always involve eyes, depends on which arteries are affected, and that’s seemingly random -

link.springer.com/epdf/10.1...

Your doctors have done the right thing, so just see how things go, and what becomes of next Tues consultation. Of course you don’t want it to be GCA, and I hope it’s not, but as you say, better safe than sorry.

[SnazzyD]

That’s the trouble with diagnosing GCA; it can feel like a punt and one is really wanting a bit more than that before being sent off on the high dose Pred run. I can understand it even more when you’ve had a recent issue in the same location. GCA doesn’t sound like a silly idea here at all, especially with the jaw claudication. The lack of sight issues is not a reason to doubt GCA not least because it can be in any of the cranial arteries, not just the ones that supply the eyes. I guess if there was some other inflammatory condition going on, a whack of Pred would suppress it. However, a decent infection could also trigger GCA.

My symptoms crept up on me and were worst in the morning. I didn’t have severe throbbing either, just a kind of burning under the skin eventually all over. I also had pain in the base of my skull and slightly dicky neck as if I had slept badly. My ear on the worst side had tinnitus too.

My GCA was diagnosed on symptoms alone because my bloods were normal and my biopsy normal, though I had been on Pred for 8 days by then. My PET scan 3 weeks later was also normal and a waste of time by then. I had a head CT done to rule out other things and I don’t think it unreasonable to ask for a scan and a specialist opinion.

[PMRpro Ambassador]

healthunlocked.com/pmrgcauk....

is a post about the work DL refers to.

But the cardinal signs I imagine the GP picked up on is this "I was very tired, jaw hurt when chewing and was losing weight".

I doubt you can have "proof" it is GCA - but the addition of the high CRP and the response to pred is also very suspicious.

I think you have to feel there is a high index of suspicion and the speedy action has aborted anything worse. If it isn't GCA you will get off pred reasonably easily without flares and problems. But your vision is protected and other nasties have been avoided.

[random901]

Hello kalgoorlie! Sharp pain in ears, especially RHS, plus claudication, upper RHS, is initially what made me visit GP Sept 2023. She immediately put me on 30mg pred, suspecting GCA, and I saw rheumy 2 weeks' later. She upped pred to 40mg and arranged biopsy a week later. Biopsy confirmed GCA. I had no sight problems, but just a mere hint of tenderness in right temple. As soon as I started pred, the stiffness and pain I got every morning (which I'd put down to my fibromyalgia) improved like magic! As has been said, GCA can manifest itself in ears. Best wishes.

[kalgoorlie in reply to random901]

Hi random901,Thank you for reply. Very interesting. Who suspected it? You or your GP? I had previously read about GCA via this forum and so it was me who suggested it to my GP, whereupon they sprung into action. Interesting also that your biopsy proved positive despite only slight temple tenderness. Did they say whether the condition was mild or severe or just simply GCA? I have had occasional sharpish twinges in my ear but mostly intense fullness. And slightly in left ear too. I shall discuss biopsy with doc on tues, although it sounds scary. I've read that an ultrasound can show it up too.

Thank you

[random901 in reply to kalgoorlie]

Suspected by a GP I'd not seen before - she had me on pred within a few hours! I had not heard of GCA. Don't know whether it's mild or severe. Biopsy not scary. You wash hair beforehand, get a few jabs of anaesthetic just above hairline (a bit uncomfortable), then a 3 - 4 cm incision is made (couldn't feel a thing), artery located (took a while), and tiny sample taken and stitches put in. Received written report less than 2 weeks later. One thing I forgot to mention was that I had experienced random scalp tenderness for well over a year, making brushing hair painful. Hope this reassures you 😊

[RoadTrip]

My GCA originally started with PMR symptoms for about a month then ear, teeth and jaw pain. The pain varied throughout the day but at times was intense. Only after about another week did the typical headaches start. Ear pain has also been present when my GCA starts to flare.

[musicalJ]

After 2 months of PMR I developed excruciating pain deep inside my left ear, associated initially with pain in my left jaw and then with pain in the left side of my neck. I couldn't get a GP appointment so went to the dentist, because the ear pain was associated with jaw pain. The dentist could find nothing wrong and suggested warmth and massage, which helped. The next thing I developed was jaw pain on chewing, but it was the subsequent episodes of double vision that led to a diagnosis of GCA. One interesting symptom I had that no-one else seems to mention was that I could not lick food from my teeth or out of the corners of my mouth, as my tongue had no strength. Once on prednisolone that last symptom disappeared. Since being on prednisolone I've had a few minor episodes of ear pain; I was deaf in that ear previously. I'm awaiting an ENT appointment for my ear, the problems started a long time ago, but the deep pain was new when I got GCA.

[PMRpro Ambassador in reply to musicalJ]

GCA affecting the tongue is mentioned in the literature but it is quite rare.

[Birdfriend]

hello- I was diagnosed with GCA last April. It started with jaw pain. But one of my most painful symptoms was my right ear. It hurt so much. When the ER doctor told me he was certain I had a migraine, I kept telling him about my ear pain! It would sometimes feel like someone lit a blowtorch inside my ear😞. Needless to say, I was finally diagnosed with GCA though a positive biopsy.