CGA possibility???what to do

[Artwatercolour]

Hi need advice. Had a flare and now on 12.5 for about 10 days and last night started to get pain in jaw - somewhat uncomfortable when chewing. Unable to see Neurologist due to holidays. So this morn I added 10 to my 12.5 = 22.5. Under the circumstances did I do the right thing?

[Nextoneplease]

Hi 😊I’d say on the whole you did the right thing. But….the better thing would be to see a doctor. If it can’t be a neurologist or rheumatologist, then attend an emergency department. I say this because IF it is GCA, it should be treated as a medical emergency. You need an assessment as soon as possible. What you have done by adding 10mg is put a sticking plaster on the problem. If you do have GCA you need something much more heavy duty!

To help others to answer you, can you say whether you have any other symptoms please? Also whether the 10mg has helped the jaw pain?

Good luck and if you are at all worried…..treat it as an emergency.

Nextoneplease x

PS Jaw pain caused by GCA typically gets worse as you chew, and resolves quite quickly when you stop. Do you have any other symptoms like headache, tender scalp etc?

[Artwatercolour in reply to Nextoneplease]

It has helped jaw but not 100%

[Artwatercolour in reply to Nextoneplease]

Only other symptoms right hand somewhat painful

[Nextoneplease in reply to Artwatercolour]

Hi again 😊

Have just had a look at your profile and it seems to me that you’ve been advised to reduce prednisolone very quickly! I’m not surprised you still have some hand pain. The jaw pain could be due to steroid withdrawal I guess, but I’d still feel happier if you are able to see a medic about it. For clarity, does it resolve soon after you stop chewing? And does it get worse the longer you chew?

I see you’re in Australia and I don’t know much about your medical system. Can you contact another doc if your neurologist is away?

Got to get to bed now - it’s 1.30am here! I’m sure someone else will be here before long 😊

All the best xx

[Artwatercolour in reply to Nextoneplease]

Yes I think the jaw pain does resolve after chewing - I just had lunch and the pain is 99% gone. What does that mean?

[Nextoneplease in reply to Artwatercolour]

It’s not conclusive, but it may indicate that the pain is caused by inflammation, rather than, for example, osteoarthritis of the jaw, where the pain might last longer.

So….another reason to get checked out 😊

[Artwatercolour in reply to Nextoneplease]

It's now 5 hours after taking pred and the jaw only has very minor pain hardly any. And I am known to clench teeth whilst sleeping - sorry answer in your morn when you can

[DorsetLady PMRGCAuk volunteer]

Hi,

Could be a sign if GCA, but could also be TMD if you have no other symptoms and if you grind your teeth - see link -

healthdirect.gov.au/temporo...

But as Nextoneplease says in relation to your tapering etc it does need following up. Your start dose was very high for PMR, was GCA suspected?

Suggest you attend ED if your specialist or primary care doctor is not available, but would stay at increased dose for a few more days anyway until you get some answers.

[Artwatercolour in reply to DorsetLady]

I hit a flare at 7.5 and understood from this site to add 5 until pain subsided - on 15 for 7 days - then went back down to where there was basically no pain. I went to 10 for 2 weeks then had pain come back went to 12 for 5 days had pain increased to 12.5 for 6 days then today due to jaw went up to 22.5.

[DorsetLady PMRGCAuk volunteer in reply to Artwatercolour]

You did the right thing, but it obviously didn’t work out, so that certainly sounds like a more severe flare of your PMR, or as you fear, maybe the beginnings of GCA, and in your situation I would certainly be seeking medical advice.

Much better to visit hospital ER/ED where they can run tests (even if things come back as alright) than risk GCA and all that entails.

Please do that, and let us know the outcome.

[Artwatercolour in reply to DorsetLady]

Went to emergency. Eyes ok. No Gca symptoms. They think jaw pain could be from not wearing mouth guard as I’m a grinder. Said should I get any Gca symptoms to come right back. Also to see my Rheumie - that won’t be easy to get appointment but need to know what to do with pred - at 22.5 right now.

[DorsetLady PMRGCAuk volunteer in reply to Artwatercolour]

That’s good news, so pleased you went to get it checked. So long as it’s not GCA then you should be able to drop back down to a lower level of Pred quite easily. See attached for info about flares -

healthunlocked.com/pmrgcauk...

But I would be inclined to try 17.5mg for a week, then down to 12,5mg…last dose you were okay….maybe at that dose for 3-4weeks and then hopefully you can

1) resume normal tapering regime, and

2) get a Rheumy appointment

Good luck, but just monitor things

[Artwatercolour in reply to DorsetLady]

Thanks so much for your help

[Artwatercolour in reply to DorsetLady]

Will do as you recommend above. Have worn mouth guard since Tuesday -3 nights AND this morning no jaw pain at all.

[DorsetLady PMRGCAuk volunteer in reply to Artwatercolour]

Good, long may it continue…..

[Nextoneplease in reply to Artwatercolour]

That’s great news 😊x

So pleased you got checked - good luck with the mouth guard and with sorting out your pred dosing x

[Artwatercolour in reply to Nextoneplease]

Thanks

[SheffieldJane]

Do have an emergency investigation. You really can’t be too careful with GCA. My renowned Rheumatologist was always most interested in the “ peculiar” jaw symptoms that GCA patients can get, as they can point to a diagnosis more clearly.

[Broseley]

It's interesting to read what people say on here about jaw pain. My experience was the stiffness in my knees, hips and back spread to my jaw, so that it was difficult to open my mouth wide enough to get food in. There was a constant pain in the mandibular joint in front of my right ear, but not left. I also had pain in my ears but not in my temples. Chewing was achy but the aches stopped when I stopped chewing. I also developed a headache in the occipital area at the back of my head but no eye symptoms. I was diagnosed with GCA and PMR and put on 40mg pred after initially being on 15mg just for PMR which cleared all the jaw pain but not the headache.This, to me, points to my jaw pain being caused by PMR rather than GCA. The same could be true for you. What do the experts on here think?

[PMRpro Ambassador in reply to Broseley]

Personally I don't think PMRper se causes jaw pain - if it does it is because it is a GCA overlap but that isn't the same thing. Look at Fig 1 here:

academic.oup.com/rheumatolo...

[Broseley in reply to PMRpro]

Thanks, that was interesting reading, though I didn't understand it all, despite having been a biology teacher! It was particularly interesting to read the suggested new criteria for diagnosis of GCA. My rheumy was very keen for me to report any jaw pain, so it looks like they've been adopted? He was also interested and made a note of my previous chronic idiopathic urticaria, which I was told was due to overactive T cells.

[PMRpro Ambassador in reply to Broseley]

I do like that paper - not least because the author is my rheumy here! Fig 1 clarifies a lot I think.