Jaw pain could this be GCA

[Amkoffee]

I'll try to keep this as short as possible. I had PMR for about 3 years and it finally went into remission. I was unable to stop steroids completely due to having acquired adrenaline sufficiency. So I'm now taking a very low dose of hydrocortisone three times a day. But I've been experiencing a great deal of jaw pain and for quite a while. My roommatologist had a special MRI done of my jaw which is a non-invasive way to determine if I have GCA and it came back negative. Since that time my jaw pain has gotten much worse and I'm wearing a mouthguard because I know that I do grind my teeth at night. But I have developed very large swelling in both Jaws. My lymph nodes? And not every day and sometimes it's one jaw and sometimes the another. All this has transpired over the last 6 months. Is there any possibility that this could be GCA? My vision seems to be as normal as it always has been.

[Amkoffee]

I forgot to mention that both of my inflammation marker are elevated, but they are always elevated. Also I do get a head ache now and then but I think it comes from my neck pain.

[DorsetLady PMRGCAuk volunteer]

Sounds as if it more likely a TMJ/TMD issue, maybe have a look at this link - and there are plenty more online -

webmd.com/oral-health/guide...

..and maybe get a dental check up.

[SnazzyD]

I’d agree with DL. From the face of it, it doesn’t sound like GCA because you don’t get a swelling and it doesn’t tend to swap sides. Any issues to cause a swelling could easily increase your markers and you also have a history of teeth grinding. GCA pain hits the muscle of the jaw when you are chewing and stops when you stop, like a tired muscle. Out of interest, what is this jaw MRI that detects GCA, how does it do it?

Sounds like you need a dentist and/or a maxillofacial specialist.

[PMRpro Ambassador]

"a special MRI done of my jaw which is a non-invasive way to determine if I have GCA "

Tell me more - because it strikes me as very clever if it can identify GCA in upper chest arteries ...

But I agree with the others - that isn't typical GCA jaw pain but sounds more mechanical.

[Amkoffee]

An excerpt from an article about MRI diagnosis of GCA. The link to the whole article is below.

High-resolution MRI has been shown to be useful for the diagnosis and long-term monitoring of GCA [7,8,16]. Vasculitis on MRI findings presents as increased vessel wall thickness and edema with increased mural enhancement on high-resolution post-contrast images. Currently, it is predominantly used for the assessment of extracranial LVV-GCA. However, recent studies have revealed that MRI could also be useful for cranial GCA [37,38,39,40].

ncbi.nlm.nih.gov/pmc/articl...

[Nightingales]

This is really interesting but unless I missed it it doesn’t make recommendations for those on steroids apart from saying they should be stopped or delayed. I have refractory PMR and had a negative US twice . My rheumatologist will not do a PET scan until I am down to 5 mg. As I am on 17.5 it’s going to be a long while.

[PMRpro Ambassador in reply to Nightingales]

Some rheumies will suggest a rapid reduction to 5mg or less in order to do the PET-CT scan - mine did. It has worked for a few people to get the confirmation if diagnosis but for others it has led to a massive flare which was then extremely difficult to get under control. I got confirmation that I probably don't have LVV (large vessel vasculitis) but the last 3 years since were one long flare but with all the other things I was coping with (the scan was the week before the first lockdown happened here in Italy and my husband was also seriously ill) I don't know I can say with confidence what caused what. By far the worst flare happened after my husband died and despite Actemra has been hard to get mopped up.

[Nightingales in reply to PMRpro]

I am sorry to hear about your long flare PMRpro. Back to the drawing bird I guess. I am just hoping the Leflunomide works and that I can stay on it.

[Amkoffee in reply to PMRpro]

I did not know that you lost your husband. I'm truly sorry to hear that.

[PMRpro Ambassador in reply to Amkoffee]

Thankyou - nearly 16 months now.