How do I disentangle symptoms that could be sinus, tmj, or early signs of GCA coming to join my PMR?

[Hindags]

I have been having sinus ( pressure in my temple and. Geeks, and nose as well as stuffed ears, mostly left sided) or TMJ some feeling of dislocation on the left side of my jaw and slight locking during dinner) symptoms of late. They get worse over the course of the day. In the morning I’m usually fine. Today I’m asymptomatic at 2:30 pm California time. Other days it can be painful. No visual changes. No sensitivity in my scalp.

I have been a gum chewer to help with reflux and have all but eliminated that. I do note that things get a bit worse after eating hard things like nuts. Unfortunately, I chew mostly on the symptomatic side because a lost a big molar on the other side. No one wants to fill in that space because I can’t have a bridge there and being on AA and Pred make an implant iffy.

I keep hoping it isn’t GCA arriving to complicate things. The ENT wants me to get a CT scan before seeing me. My GP wants me to use a sinus rinse, Flonase, and gargle. My Rheumy has examined me and says that with good pulses, very good inflammatory markers ( and mine have been pretty reactive in the beginning of my PMR) she thinks it is sinus because of post nasal mucus she saw.

Any suggestions?

When Dorset LDy mentioned in another discussion the other day that she had no pain or scalp tenderness and awoke with blindness on one eye, I became a bit more alarmed that I might be too casual about these symptoms.

[DorsetLady PMRGCAuk volunteer]

Hi Hindags,

Think you may have misread my post - I think I said I had no pains nor inflammation in my temporal artery - at least that’s what I meant! I certainly did have scalp tenderness and pain in jaw - sorry if that misled you. But, and it’s a big but, that was pre diagnosis/pre Pred. A very different scenario altogether.

Unfortunately we are apt to blame every new symptom on the PMR or GCA (understandably) when it’s not, and as they seem to manifest later in the day my initial reaction would be - it MAY not be GCA. The only worrying thing is the jaw pain after eating, although mine came after eating anything, not just things like nuts.

I don’t think you are being too casual, but do keep monitoring things whilst you try the sinus rinse and get a CTscan.

Good luck.

[Judyliz in reply to DorsetLady]

Hello Hindags,

Can you just clarify, you said you chew gum but I wasn't sure when you say " have all but eliminated that" if you meant you had nearly controlled the reflux or had nearly stopped chewing gum.

I have TMJ problem and GCA and I understand your concern however my dentist and some of the health web sites all say do not chew gum. We put too much continuous pressure on a weakened joint be it from arthritis or another cause. The pressure needed to crunch up a hard nut is quite considerable.

I hope you sort out the problem soon.

Judy

[Hindags in reply to Judyliz]

Thank you for your advice. I'll have to rethink food all over.

My reflux is under control with omeprazole. I had started chewing more gum when I started pred because it helped with some nausea I had the first few months, and continued because of some esophageal spasms in thecearly days of taking fosamax. It also helped as a substitute for a carb snack. I have all but quit now.

What has helped with your TMJ?

[Judyliz in reply to Hindags]

The dentist has fitted me with a gum shield which I wear at night. It was initially uncomfortable and took a bit of getting used to, I also wore it during the day when I first got it but made sure I discreetly removed it before meeting people.

It has definitely helped, I return to the dentist in 2 months for a review.

I do still chew 8 almonds each day but one at a time and slowly.

I am as certain as I can be about the cause of my jaw pain and have discussed it with dentist and rheumatologist, whereas at the moment you are not which is a dilemma for you.

I have also had x ray of my cervical vertebrae which shows arthritis which can cause related symptoms.

I have practiced yoga for over 40 years, I am not so good at the meditation but I am actively working on relaxing my jaw. A lot of us grit our teeth without realising it which is so I understand the most common cause of jaw pain.

If I think of anything else I will let you know.

Best wishes Judy

[Hindags in reply to Judyliz]

So thankful for this info..

I dont think I need a night guard. Morning is the best time for me.

I do think it is time for further evaluation. Dont know ehether to start with dentist or ct scan and ent.

[karools16 in reply to Judyliz]

Hello Hindags. I have had GCA 12 years. My dentist wants me to use sugar-free chewing gum, as I have dry mouth.I take Lansoprazole for reflux. Hope you get sorted.

[Rimmy]

Hello

Just to say I had terrible throbbing in my face and around my eyes/cheekbones not long after an initial diagnosis of PMR. I put this down to sinus type allergy (I thought to redgum flowers which were everywhere around my house) at first and tried antihistamines. These had no effect and nothing else helped. At that point I was only on a moderate dose of Pred but not at a GCA level. After a while I realised (despite the fact only a few people had ever mentioned what they described as 'sinus' related issues here) this as possibly GCA as I was also getting some visual symptoms - small intermittent blue 'flashes'. Too late for a biopsy as already on Pred my dose was upped on my insistence (an eye check was also unrevealing) and my face pain/sight symptoms disappeared very promptly. I had all kinds of bother at the time hesitating to admit I might have GCA but given my mother had had that herself (undiagnosed) in the 1970s I realised the likelihood was higher. Long story short I am still tapering down after only one year since dx and face pain has not returned - although I have recently had a 'flare' (mainly bad fatigue/night sweats) at 12.5 mg - so back to 14.5 now after a month or so on 15 mg.

Best wishes

[PMRpro Ambassador]

Apparently chewing gum has been touted as a diagnostic tool for GCA: if you develop jaw pain while chewing gum it may be a sign of GCA.

However, in general I'd be suspicious that you may have LVV (large vessel vasculitis) that isn't as specific as GCA:

academic.oup.com/rheumatolo...

[Hidden in reply to PMRpro]

ncbi.nlm.nih.gov/m/pubmed/2...

Can't access full article cos not subscriber but if I remember rightly it was chew gum for 2 mins then stop and repeat for 2 mins and "good" indicator of GCA.

Looks like if you have the will you can access full text via link therein.

[Hindags]

Thanks. Will try.

[clieder]

Just did a search of sinus symptoms and came upon this. So familiar! This swollen, achy left side of my head just started a few days ago and led me to look for it on here. Seems to go from the jaw up the nose, back to the ear, down the neck. I thought it might be from a crown on which I just had a filling, but dentist assured me the tooth itself would hurt, not just the sinuses. No sign of infection when I blow my nose and no fever. I was initially diagnosed with PMR and possible GCA in March of '15. At that time, had throbbing in left temple and some jaw claudication, so they started me on 60 mg, dropped to 40 mg and tapered from there. No visual or scalp symptoms. I am curious how this played out for you. Will let rheumy know this is going on, but it has only been a few days and don't want to jump the gun if it is going to just go away. I know it was a year ago, but maybe you have some idea what happened next? How long did it last and did it recur?

[Hindags in reply to clieder]

My symptoms have gone. Don’t really know why. I started Allegra for possible allergy. I am also using Flonase steroid nasal spray but I have to stop it after a few weeks because it irritates my nasal passages. I also use saline nasal spray and nasogel. The latter keeps my nose from drying out. Everything is more sensitive when I’m dry.

Over the last year I have also bought a new electric toothbrush and I follow brushing with a waterpik cleaning. A few drops of hydrogen peroxide in the waterpik seems to have helped my gums.

And finally, my osteopath has worked on jaw alignment.

Your guess is as good as mine why things are better. I think the new teeth cleaning might have been the game changer and the osteopath.

[clieder in reply to Hindags]

Thanks! That is all helpful. So hard to sort out what is causing what and your symptoms were so similar. Guess one goes to work on any of it and hopes that takes care of all of it, sooner or later. The dryness factor is interesting. Always troublesome and I forget that when I don't fill the humidifier! Thanks again and so glad all is well for you in this regard.