Jaw discomfort

[Temoral]

Hi Everyone. ..GCA diagnosed in September 2021. ..mainly on persistent headache and high inflamation bloods. Started on 40mg. Now on 15. Couple of days of jaw discomfort, although not experienced it before diagnosis. Interested to hear other people's experiences...due a Rheumy phone appt in a week.....thanks in advance.

[PMRpro Ambassador]

To be down to 15mg after a diagnosis of GCA in September is very speedy - you aren't reducing relentlessly to zero, you are looking for the lowest dose that manages the inflammation at any given point. I suspect you may have overshot that for now - it doesn't mean you won't get lower - just not just yet. Most people take up to 6 months to get to 20mg,

[Temoral in reply to PMRpro]

Thanks...Rheumy's tapering guide....I am going to ask him to slow it down...it would be great to reduce, but not at a price...May ask GP tomo.

[DorsetLady PMRGCAuk volunteer]

Would say probably too fast a reduction…and you have gone below level of Pred you actually need. How long have you been at 15mg? ..and what exactly you mean by jaw pain?

Jaw claudication (hurts when chewing, but stops when you stop chewing) is a sign of GCA, but it can also be caused by other things.

[Temoral in reply to DorsetLady]

Thanks for reply. This is 2nd week at 15mg. Jaw 'clicks' when I start eating, then eases, but sensation lingers on with sensations in cheek that I have had for a few weeks intermittently. I was asymptomatic in many ways with GCA....

[DorsetLady PMRGCAuk volunteer in reply to Temoral]

As you’re into 2nd week on 15mg then that indicates a flare to me …..Bit of extra info re flares etc -

healthunlocked.com/pmrgcauk...

I found jaw really hurt when eating, couldn’t get through a slice of bread at its worst.

Might be that, but clicking could be TMD -. Have a look at this -

nhs.uk/conditions/temporoma...

[Temoral in reply to DorsetLady]

Thank you

[fmkkm]

Hi, my jaw hurt before diagnosis. One morning it was so bad I couldn’t open my mouth. It never returned after my initial dose of 40 mg prednisone. I tapered much slower than you following the advice here.

[Temoral in reply to fmkkm]

Thanks...my Rheumy is very insistent on his regime...why don't they look at this forum...🤔 GP is more inclined to listen...I would rather be on DSNS

[DorsetLady PMRGCAuk volunteer in reply to Temoral]

Don’t necessarily need to be on DSNS / just a more moderate taper.

Rheumy is following the guidelines probably - but as we all know they don’t work for everyone - some doctors don’t want to know that!

[Temoral in reply to DorsetLady]

So true...I feel like I'm having to nurse him through ideas sometimes 😉

[piglette in reply to Temoral]

The trouble is your rheumy has never had to take steroids for GCA or PMR.

[Temoral in reply to fmkkm]

Thanks...just shows how individualistic this immune system journey is....

[SheffieldJane]

My Rheumatologist always regarded jaw claudication as a red flag. I think your dose is too low. In order to protect your eyes, you need urgent medical advice from your Rheumatologist. Jaw Claudication is pain whist chewing, getting progressively worse as you continue to chew.

[Temoral in reply to SheffieldJane]

Thanks.Will phone him today.

[PuttyPenguin]

Yes my jaw hurt when I was finally diagnosed and I couldn't open my mouth, so I guess you've gone lower than should have done with the pred. Speak to your rheumatologist.

[Temoral in reply to PuttyPenguin]

Thanks...have left a message with his secretary....

[Broseley]

Hi Temoral I was diagnosed with GCA (and PMR) in September 21 too. I too started on 40mg pred. I am now on 20mg though due to reduce to 17.5 later this week. I am worried that my taper is too fast, so I think yours is. Though I am not getting any symptoms. I would advise to definitely speak to your GP.

[PMRpro Ambassador in reply to Broseley]

You can reduce as fast as you like - if it works! But as soon as you feel it isn't OK, you need to slow down, not just plough ahead regardless. And if you have overshot - go back!

[oscarandchloe]

I was diagnosed with GCA in 2019 . I had no idea what was going on pre-diagnosis so treated it with analgesics every 4 hours day and night for over a month. The pain in my jaw eventually affected my teeth, back ones became numb (no blood supply), my jaw ached continuously not just when eating and this was accompanied by awful neck pain. Thank goodness the young GP I saw had recently been on a course in recognising GCA and immediately but me on 45mg of Pred. The next day I was back to normal and and have never felt any of those symptoms again. I'm now tapering down from PMR that I think I developed after GCA but this has been much slower and lingering - just got to 5mg from 15 mg in 2 years and probably sticking there for month or so.

[Temoral in reply to oscarandchloe]

Thanks...hope you are managing a balance now. I am awaiting my Rheumy to reply to my phone message....