GCA OR TMJ? : Well after going through all the GCA... - PMRGCAuk

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GCA OR TMJ?

Missus835 profile image
22 Replies

Well after going through all the GCA tests, including biopsy which shows a 3 cm piece of the temporal artery with no extra wear and tear, it would seem that Rheumie cannot definitely say it is or isn't GCA and so has begun reducing the Pred. She wanted to go from 60 mg to 50 this morning, but this morning I dropped it to 55 mg. for a week and then will try the 50 having learnt lessons well from this forum. Kudos to Rhuemie for finally spending a good deal of time, as in the past this was not the case.

At the beginning of January, 2023 I had gone to the dentist. Regular visit, one filling, one restoration. Not long after that, I started getting this huge pressure between my ears, pushing outwards and jaw pain, neck pain, of late swallowing has become difficult. The Pred, it seems, too care of the jaw pain, but the deafness and tinnitus from the pressure never did go and still persists as we speak. This was the same pressure that my quack-a-doo GP did not have time to discuss.

On Jan 21st, ended up at ER with all the "GCA" symptoms, including this pressure between the ears. Vision had not changed according to Ophtamologist to whom I was referred the following week. Optic nerve, etc. were good. A slight growth in the cataracts (minimal). The CRP was elevated to 24 from 3 which is a fast jump over 2 weeks (had bloodwork 2 weeks prior), which also coincides with the dentist visit. 24 is not bad, considering it's been twice that at the onset of PMR.

Last evening, went on the Google and actually found that TMJ and pressure/pain, deafness, difficulty swallowing and tinnitus are things that TMJ can cause. Matched the symptoms exactly.

This afternoon, I'm off to the dentist as all this could actually have been TMJ, which I've had for years, but it could have been triggered by having my jaws open wide for the fillings, or maybe the PMR has weakened the jaw muscles. I do not know. The TMJ has never really presented any problems except for once when my jaw locked open at the dentist.

Also, worthy of mention, I've only gained 12 pounds in the 1.5 years I've had PMR, although I look like a little Buddah with the neck ring and cheeky cheeks. I thought for sure I'd be over 200 lb.

So here' fingers crossed for TMJ? Thoughts please my wonderful support people.

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Missus835
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22 Replies
SnazzyD profile image
SnazzyD

I had to have treatment from an osteopath as did my daughter after holding our mouths open at the dentist. Caused various head and ear symptoms but fixed. Got TMJ issues again when Pred made my muscles weak which resolved as my dose reduced. My biggest GCA scares came from tension in my sternokleidomastoid muscles in the neck which gave me TMJ symptoms, ear pain, scalp pain, eye pain and more. It’s a tricky call to make sometimes.

Missus835 profile image
Missus835 in reply to SnazzyD

So was it GCA?

SnazzyD profile image
SnazzyD in reply to Missus835

The post dentist thing wasn’t and the others were after GCA diagnosis but not a GCA flare.

Missus835 profile image
Missus835 in reply to SnazzyD

I'm so sorry you're going thru the GCA thing. It's a hard pill to swallow - no pun intended. Did you have PMR previously? I do have PMR. Dentist says acute TMJ/TMD and so wants to fit me for a bite plane. I have to think this one over. May try accupuncture, but unsure as to how this will fit with the autoimmune aspects. Very unsure at this point. Rheumie is reducing Prednisone as GCA diagnosis not definitive, so I shall have to be astute about the returning of all the symptoms related. Thanks for your response. Very much appreciated. All the best.

SnazzyD profile image
SnazzyD in reply to Missus835

No PMR, my GCA came all on its own. I too had negative biopsy and normal blood results.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Actually a negative biopsy doesn’t prove you don’t have GCA, just that no cells were found in the sample - not quite the same thing.

I hope it’s not GCA, but just be alert whilst you are reducing the Pred - and obviously any return of symptoms then back to Rheumy pronto.

Missus835 profile image
Missus835 in reply to DorsetLady

Oh I'm well aware of symptoms possibly returning. Also dentist says acute TMD and wants to make me a bite plane. So we can add this to the list of one day at a time. Overwhelming by times. To be continued..

Merryfield profile image
Merryfield in reply to Missus835

night mouth guard and gentle face massage should help.

Missus835 profile image
Missus835 in reply to Merryfield

Yes, I'm going to go for the mouth guard and I can massage my face; also with a little heat and cold compress. Hopefully will sort it out as this full head pressure is driving me bonkers.

Merryfield profile image
Merryfield in reply to Missus835

Feel better!

whitefishbay profile image
whitefishbay

When you went to the A&E didn't and ENT check out your hearing issues?

Missus835 profile image
Missus835 in reply to whitefishbay

Doctor looked in my ears and said "no infection" and at that time I did not even think of the TMJ which had never been an even frequent issue. Then as the Prednisone 60 kicked in for the jaw and other pain...the pressure in the head and on the ears never did subside. I even mentioned it to the Rheumatologist on Tuesday. All she said was "I wonder if there's something else going on there." That's when I googled the symptoms TMJ and pressure in the head and that's when I called my dentist and ended up in his office yesterday.

whitefishbay profile image
whitefishbay

As someone knowledgeable on the PMR forum told me to go to A&E when my hearing suddenly changed. They treat hearing loss like a stroke.

Missus835 profile image
Missus835 in reply to whitefishbay

Yes that was my concern along with all the other "head" symptoms. We are our best and only advocates. I am like a dog with a bone though and will keep at them for answers. This is Nova Scotia, Canada and our health system is way less than adequate and our doctors rarely stay.

whitefishbay profile image
whitefishbay in reply to Missus835

I think all health systems are struggling due to covid and lots of medical personnel getting OUT. Keep going!

Nightingales profile image
Nightingales

oh don’t you just I’ve the GCA, TMJ, neuritis, cervical disc dilemma. I have been going through it for two years. Ultrasounds were neg. Spine dr says not typical for spinal stenosis. Added on to high ESR and CRP, jaw, scalp, headache I now have awful earache. Nothing to see. Rheumatologist says not related. May be TMJ . I guess I will be adding an ENT specialist to my long list. I hope you get an answer soon Missus.

PMRpro profile image
PMRproAmbassador in reply to Nightingales

"Added on to high ESR and CRP, jaw, scalp, headache I now have awful earache."

With a history of PMR - first on the list MUST be GCA ...

pubmed.ncbi.nlm.nih.gov/314...

Missus835 profile image
Missus835 in reply to PMRpro

Thank you for the link Pro. Informative. :( Where is the 8th cranial nerve located and fingers crossed it's not along the edge of the eyebrow. (Nevermind I googled "8th cranial nerve.) I have decreased the Pred from 60 to 55 mg. Rheumy wanted me to drop to 50 mg. I feel miserable and the pain which seems to have returned is that in my left shoulder (so far). Feeling as though head does not want to function. Focus and concentration seem to have left overnight. A wee bit wonky. When I don't sleep at night for a few nights, this is what happens.

Just slept for 2 hours after being out with daughter for breakfast (I was absolutely ravenous.) I don't know what dentist touched yesterday with his instrument, but right ear tinnitus is screaming at me and when I tilt my head back, it's like there is fluid moving and I can then hear. Then when I straighten head up, the hearing goes. Left ear, however, is improved today. He says actute TMD.

There is no "visiting" the Rheumy here. It's a "go thru several channels phone call". Is it possible just the drop in Pred is affecting all of this and may level off? Also, I think 5 mg. is too much of a drop, but I believe we said that at the higher doses 5 mg. may be ok?

PMRpro profile image
PMRproAmbassador in reply to Missus835

Everyone is different - some notice dose changes more than others.

Merryfield profile image
Merryfield in reply to PMRpro

We are all fortunate to have people who have been thru this s - - - to get knowledge and experience from.

Nightingales profile image
Nightingales in reply to PMRpro

Thank you PMR pro. I guess I will need a second opinion to get a diagnosis. I know it fits but this is my second US in two years with ongoing symptoms. 30 mg takes care of the inflammatory blood markers but the symptoms never really go away. He won’t do a PET scan until I am down to 5 mg as he says it won’t show the inflammation. I am now on Leflunomide for the past month and so far so good for my liver and minor side effects. I need a dr who will diagnose without a definitive us or biopsy. Thank you for your concern.

Missus835 profile image
Missus835

We make a good team. Sorry to hear you're going through all this stuff hopefully we will level off soon. Best of luck m'dear.

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