Jaw Pain Question

[montebello]

Hi all,

I'm a GCA patient, having been diagnosed in AUG 22 (a little more than a year ago). I started on 60 mg, and after a year have weaned down to 8 mg. I've been using the DSNS method of weaning, and was in the process of going from 8 mg to 7 mg when I started having jaw pain. The pain only comes when chewing. I'm fairly sure it's GCA-related as I've never had any TMJ issues in the past.

So I upped by dose to 9 mg, which eliminated the jaw pain. But after staying at 9 mg for 6 days, the pain is back today.

I upped it to 10 mg today, but so far no improvement.

I'm certainly open to any advice you wonderful people could give me.

Thanks so much

[SheffieldJane]

I would be inclined to go to my dentist and request an X Ray. It sounds like something mechanical has gone wrong that causes inflammation and that responds to Pred. Obviously talk to your Rheumatologist as well. I have been recently surprised at how helpful my young dentist is able to be with jaw issues.

[montebello in reply to SheffieldJane]

Thanks. I'll give it a try, cause I sure hate to go back up with the PRED!

[PMRpro Ambassador in reply to montebello]

But it is infinitely preferable to allowing the inflammation to build up to where it was originally.

[PMRpro Ambassador]

It is quite possible that the disease activity has gone up a bit, it wasn't just the taper overshooting. I would see how you go for a day or two and if it comes back again, contact your doctor. You don't want to get it get away from you.

[montebello in reply to PMRpro]

Okay. I'll do as you suggest. But is it normal for disease activity to go up?

[DorsetLady PMRGCAuk volunteer in reply to montebello]

Yes, especially within the first 18 months.. please speak with your medical team.

[PMRpro Ambassador in reply to montebello]

Yes, especially in the first year or 2 as DL says. And some forms of PMR just chug along and come out to play every so often, In the umpteen years I have had PMR, it has flared for no apparent reason a few times. And a couple times for an identifiable trigger like a vaccine.

[Grammy80]

My experience has been that jaw pain is one thing but the inability and painfulness of chewing is a more concerning matter. You have done very well to taper down to 8 mg in one year. It isn't unlikely, in my opinion, that you may need to increase your Prednisone for a bit. Over the four years that it took me to get into single digits there were a few times where I had to increase temporarily. It is much better to get control of the disease at this early stage than go into a full-blown flare and jeopardize your vision. A little bit of a roller coaster is part of the disease but there is sunshine at the end of the tunnel. My best to you💞

[montebello in reply to Grammy80]

Thank Grammy -- it's always good to hear from you.

[BaronessBetty]

I have TMJ pain, just on one side. My dentist was brilliant in referring to a head and neck for further investigation on ramping up of the pain but it turns out I grind my teeth and clench my jaw considerably at night. A night guard, although not particularly nice, does help and is worth persevering with if that’s appropriate

[Blearyeyed]

I think that getting your dentist to check is a good idea to rule things out , but, as an ex GCA patient, I think you do need to contact the GP and ask for a face to face appointment and some blood tests.You may have tapered a little too quickly and the GCA symptoms have re-emerged and the GP can also arrange for you to get jaw x-rays.

When I had a couple of flares my jaw did hurt for a week or so before the temple pain showed it's ugly head again. Better to be safe than sorry you may only need a couple of weeks of a higher dose to get it under control again , then you could drop back down to 9 mg , give yourself a few extra weeks recovery time and then you should be able to start the taper again.

Take care , Bee

[montebello in reply to Blearyeyed]

Thanks Bee. Funny, but I just had a face to face with the Rheumy last THR. I told him, at that time, that I upped my PRED from 8 to 9 because of jaw pain. At that time (THR), the jaw pain subsided so both he and I thought everything was okay. He ordered blood tests (I'll have that done this TUE), but he doesn't know that the pain returned and that I had to go up to 10 MG.

So I'll take the blood tests and await their results and then see how the pain is doing before I get back in tough with him.

Thanks for your input

[Viveka]

There is a chewing gum test that I heard about on the forum. Chew gum at one chew a second for 2 to 3 mins. If the pain stops when you stop chewing this is indicative that it is GCA related. I used this when I got jaw aches; it showed mine were TMJ on left side because my jaw continued to grumble for a while after.

[montebello in reply to Viveka]

Yeah, I know of the chewing gum test. Although I don't use gum, when I chew it hurts. When I stop it does not hurt. I'm fairly sure it's GCA-related. To be honest, I don't have a lot of confidence in my young dentist in being able to discern TMJ issues. Thanks!

[67Blue]

I agree about some dentists mine just told me I possibly had a weak jaw, and as for the omeprazole I can't ditch he just said take it we need a quality of life it won't hurt you. ???? Mine was obviously GCA related and has thankfully taken itself off. But I took 2 years to get from 40 mg to 0. My dr even tried to tell me it wasn't GCA related shows what he knows about our diseases. I really dispair of him, was just going to ask to change drs but now they are in constant chaos there is no chance we are just lucky to see anyone.