Jaw discomfort

[rosie_jones]

Can anyone advise? Onset of PMR was September 2016 and I began prednisolone in January 2017 after a long delay in diagnosis being confirmed. DEXA in August 2020 confirmed osteopenia and I began Alendronic Acid in October. Just in the last couple of weeks or so, I've started to feel a discomfort in my jaw (both sides). It's isn't pain - the best way I can describe it is how your jaw feels when you've been at the dentist and how your mouth wide open for a long time. (Haven't been at the dentist since 1st July so not that.) Any thoughts before I email my GP?

(Forgot to add - Prednisolone does - just managed to get to 4mg.)

[SheffieldJane]

As jaw claudication is a major red flag for GCA you should seek urgent investigation of this symptom. Typically the jaw aches upon chewing. Other symptoms are an unusual headache and any eye symptoms. I developed GCA in 2020 after being diagnosed with PMR in 2016. I had reduced my Pred dose to 3 mgs. My GCA/LVV was diagnosed with an ultrasound scan and a very alert Rheumatologist. As your eyesight could be at risk this even warrants a trip to A&E. There are relatively benign reasons for jaw ache but it is better to be safe with a PMR history. Good luck!

[SnazzyD]

Your temporomandibular joints may be a wonky and a dentist can diagnose this quite easily. I had this when my muscles became weak due to Pred. GCA jaw problems felt to me like the muscles had no oomph like dead legs after too much demand. Chewing made them feel tired and ineffective. TMJ felt like someone had stuck a stick in the joint so it wouldn’t work so caused pain all around.

[DorsetLady PMRGCAuk volunteer]

Have a look at this -nhs.uk/conditions/temporoma...

But do also consider GCA - do you have any other symptoms - headaches, sight disturbances, earache?

[piglette]

Jaw problems can be a side effect of Alendronic Acid.

[rosie_jones]

Thanks all for your ideas / advice. While I don't have headache, earache or visual disturbances, my temples feel sensitive and my jaw... well, just weird. So decided safest was A&E and am there - just the 3 hour wait. Will let you know tomorrow how it went.

[DorsetLady PMRGCAuk volunteer in reply to rosie_jones]

good move - and good luck.

[rosie_jones]

Good Morning all.

3 hours was an underestimate - I was actually in A&E for 6 hours. Bloods taken and all well apart from ESR which was only one point above normal - but then, I never had high scores with the inflammatory markers. Nurse practitioner discussed the results - and my symptoms - with a medical register (who sounded very bright and alert at 2am!). Outcome, they were happy for me to go home and follow up with GP, but that if symptoms worsened or I develop headache etc., to take 40mg and head to A&E. I feel happy with that because I haven't got a whole range of symptoms and know enough to react quickly and urgently if I do.Again, thank you all for your help and advice. I think I knew what was needed - I just needed someone to say "do it".

[PMRpro Ambassador in reply to rosie_jones]

Which hospital was it? I discovered this week that Scarborough has a mini fast-track GCA set-up and York is better as they have more facilities on site. I keep asking if there is a list anywhere as it would be so useful to know.

[rosie_jones in reply to PMRpro]

Hi there. It was Cheltenham General Hospital. While they didn't seem to have a fast-track protocol, I certainly felt I was listened to and that I had an appropriate (and very sympathetic) response.

[PMRpro Ambassador in reply to rosie_jones]

No, Scabs is just a basic protocol including booking a biopsy - which no doubt is done at York. I think my daughter said there was u/s at York. But they are aware and know what they should do. Which is a start!!!!

[Telian in reply to rosie_jones]

You did well getting yourself checked out. Just wanted to add I had jaw ache most of the time but not on chewing. I did have GCA diagnosed after visual problems so be vigilant. Best wishes. 🌺

[rosie_jones in reply to Telian]

Thank you so much Telian. I'm so sorry that you have developed GCA but thank you for the advice based on your experience. And I certainly will be vigilant.