Help please from anyone who’s had or has GCA. Pain in jaw.

[Loyd]

I was diagnosed 19 months ago with PMG and it’s been a rocky road with yo-yoing and now back up to 22 and a half mg of pred a day. This morning I woke up with a really sore jaw on the left side only. Tried to eat lunch and just cannot chew at all. No other symptoms - no headache or scalp pain etc. Is this very unlikely to be the start of GCA? Really appreciate any help.🙏

[SnazzyD]

Can you describe what happens and what kind of sensation you get when you try to chew? Is there any noise from the joint when you chew?

It is possible to get GCA as well as dysfunction of the jaw joint.

[Loyd in reply to SnazzyD]

There has been a few clicks when I try to open my mouth a bit wider and really painful to try to bite down. Only on one side. Thanks Snazzy

[SnazzyD in reply to Loyd]

We can’t say for certain of course but for me the GCA pain felt like my jaw muscles were just giving up when chewing like one’s legs hurt with lactic acidosis burn. If I stopped chewing it recovered. TMJ was more ouchy in specific spots when I bit or chewed and at times I could hear noises as if there was sand in the joint. Mine got better with muscle recovery when my Pred dropped and it was made worse by teeth clenching at night.

[Loyd in reply to SnazzyD]

There seems to be so much we have all had to put up with! Thanks for the help - I feel more relaxed and hopeful it’s not the dreaded GCA! 🤞🤞

[DorsetLady PMRGCAuk volunteer]

Did it stop hurting when you stopped chewing?

Would expect it to be bilateral if GCA (although shouldn’t rule it out) - maybe TMJ/TMD - nhs.uk/conditions/temporoma...

[Loyd in reply to DorsetLady]

Yes Dorset Lady I can almost ignore it unless I try to bite down or chew then very painful. I hope I’ve trapped something. I really do not want GCA!

[Loyd in reply to DorsetLady]

Oh just read your link - very helpful. Many thanks.

[alvertta]

When I developed GCA, My jaw froze all over. Could not open mouth to swallow soup.

[PMRpro Ambassador]

From what you have said it is not really typical of GCA - BUT if you are needing 22.5mg to manage PMR symptoms then you do need it checked out since your PMR is obviously not a simple one. It may be because you have yoyo-d the dose or that may be why you had to yoyo.

The jaw pain/toothache I developed was entirely due to an infected gum.

[Loyd in reply to PMRpro]

Thanks PMR pro. I’m coming down very slowly (my choice) from having to go to 30mg after bad flair trying to come down too fast because of Covid fear. I shall keep monitoring. I gather the headache is the biggest indicator which don’t have.

[PMRpro Ambassador in reply to Loyd]

By no means all patients have the headache - I think the figure is 40% have headache as the presenting feature, 70% have headache at some point. That still leaves about a third who don't have a headache.

[Loyd in reply to PMRpro]

Again thank you. It does get confusing! Do most people have more than one symptom though? I only have the jaw pain.

[PMRpro Ambassador in reply to Loyd]

No answer to that - some people have no symptoms at all until their vision is affected. The variation in symptoms is part of the reason it is so difficult to diagnose.

[Skysey in reply to Loyd]

Hi Loyd. My first symptom was severe temporal headache. It was only later when the jaw claudication started. It was only painful when eating and was mainly on one side. I only have issues with my jaw now when I have a flare.

It would be worth getting checked as you don’t want to take any chances, but it sounds more like a jaw issue.

Hope all goes well.

[Loyd in reply to Skysey]

Thank you Skysey. Everyone’s replies have been so helpful. I think mine has just been a jaw issue but feel much better prepared now if I should ever get GCA. Do hope you are getting better. 🤞

[Snowy12]

Mine was one side only but with scalp tenderness and headache.

I would say get it checked out

[Loyd in reply to Snowy12]

Thanks Snowy - I’ll see how it is in the morning and if still bad will phone the Doc.

[RoadTrip]

My Initial symptom of GCA was pain in upper and lower Lhs jaw and teeth, which then spread to both sides and ears. This was a continuous pain, which changed to a severe headache six days later. I had no pain on eating, but did find it difficult to open my jaw fully with pain on the lhs.

[PMRpro Ambassador in reply to RoadTrip]

That's interesting - very unusual to have continuous pain in GCA. Was the diagnosis made just on symptoms or did they get ultrasound or histology proof?

[RoadTrip in reply to PMRpro]

Initially was able to control the jaw, teeth ear pain to reasonable level with paracetamol, however after 4 days pain became 8/10, so given antibiotics for sinus infection, 2 days the placebo improved things, then headaches kicked in big style.

Tried ultrasound, Rheumatologist was not hopeful, inconclusive as 6 days after started 70 mg PRED. No biopsy was offered, probably would have refused, but that’s a different story.

[PMRpro Ambassador in reply to RoadTrip]

If the u/s is inconclusive then a +ve biopsy after a week of 70mg is unlikely.

[RoadTrip in reply to PMRpro]

Agreed, one of the reasons why I would have refused!

[Loyd in reply to RoadTrip]

Thank you Roadtrip. That is different again - I will very much see what it’s like tomorrow.

[RoadTrip in reply to Loyd]

Fingers crossed all ok with you tomorrow.

[Carriemetz]

The jaw pain I had was a deep, dragging pain In jaw and tongue which began as soon as I began to chew, and - more importantly - stopped as soon as I stopped chewing. It’s like no other sensation, hard to confuse with toothproblem/clicky jaw feeling. I also had a couple of episodes of strong double vision - v tender scalp too, mostly on right side, but I’m one of that proportion that Pro mentions that never had a headache. I kind of think if it were GCA u’d have more than one symptom? Best wishes, Carrie

[Loyd in reply to Carriemetz]

Thank you that is so helpful. ❤️

[Marlenec]

My tongue was as bad as my jaw, not a pain but a very deep ache both sides immediately on chewing and stopped when I stopped chewing. I couldn't finish a meal it was too tiring.

Hope it's not CCA

Good luck.

[Loyd in reply to Marlenec]

Thank you Marlenec - it’ definately Feeling better this morning so fingers crossed. Everyone has been so helpful.

[Carriemetz in reply to Marlenec]

That exactly describes it!

[jarn]

Those were my symptoms, but my doctor didn't diagnose: it led to GCA! (Giant Cel Arteritis) Get it checked immediately or could lead to blindness, which mine did. Now blind in one eye.

[Loyd in reply to jarn]

Oh how dreadful for you. How long did your jaw pain last? Mine came on suddenly overnight and lasted all day yesterday but it’s pretty much 90% better today. Did you have any of the other symptoms?

[valb232]

Hi,I was diagnosed with PMR and GCA three years ago. The pain in my head initially was in my left temple and my scalp. About 9 months ago, my jaw started hurting on both sides. I had TMJ over 30 years ago, so I'm familiar with the pain. I had a CT scan of my brain and was told I have osteoarthritis in my jaw! Don't know how old you are-- I am 70.