New jaw pain at 50 mg PRED?: Hi all, I'm a GCA... - PMRGCAuk

PMRGCAuk

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New jaw pain at 50 mg PRED?

montebello profile image
8 Replies

Hi all,

I'm a GCA patient since AUG 2022. I had started at 60 MG, and weaned too quickly down to 20 MG.

2 1/2 weeks ago my rheumy advised me to go back up to 50 MG for 4 weeks, then 40 for 4 weeks, etc. I'm currently still on 50 MG. BTW, he advised that I up the dosage because of elevated inflammatory markers plus some pain between my shoulder blades (possible aorta involvement), as well as rather severe fatigue and eye problems (swollen, blurry, etc).

About 4 days ago, my right-side jaw started hurting quite a bit while chewing. The sharpness of the pain has decreased since then -- now it's more of a dull achiness, but it's there. What the heck! At 50 MG PRED?

I have to wonder whether or not it's the PRED that actually causing many of my symptoms rather than the GCA itself. For example, the fatigue and blurry vision have not gotten any better at all since I upped the dosage -- in fact if anything it's a bit worse.

So here's my question: Can high doses of PRED cause jaw pain?

Thank you, and Happy New Year

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montebello
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PMRpro profile image
PMRproAmbassador

Not that I know of. There are other things besides GCA that cause jaw pain but your rheumy won't have told you to go back to 50mg if he weren't concerned there was a real risk of GCA.

However, your description of the jaw pain isn't really typical of GCA. GCA jaw pain is a dull ache that starts with chewing until it gets so bad you have to stop and then it fades quite quickly only to restart if you chew again. It is unusual to persist when you aren't using the jaw though it can happen.

The fatigue is a difficult thing - GCA causes fatigue but more pred doesn't really deal with the fatigue, that is a component of the autoimmune part of GCA and the pred has no direct effect on that. Sometimes high dose pred makes people wired and that balances out the fatigue - but pred can also cause fatigue. The same also applies to the blurry vision.

SnazzyD profile image
SnazzyD

It might be worth going to a dentist to check for temporomandibular joint dysfunction. I suffered from this a few months after starting Pred for GCA because my muscles became so weak. I would describe the pain from that as sharp and the pain from GCA claudication was a cramping ache in the muscles, a bit like what you get in your legs when you have to walk a few too many stairs.

montebello profile image
montebello in reply to SnazzyD

Thank you

PMR2011 profile image
PMR2011

Elevated markers are an indication of inflammation. You body will be working to “fight” the inflammation which can also contribute to the fatigue. Unfortunately with autoimmune disease fatigue seems to part of the package, at least during the more acute phase. In regards to the haw pain, not sure tapering is a good idea until that is sorted. Good luck!

montebello profile image
montebello in reply to PMR2011

Thank you

Hrblock57 profile image
Hrblock57

Happy New Year 2023! I was diagnosed with GCA also 18 months ago . Jaw pain is a symptom of GCA and also can be caused by TMJ depending on the Jaw pain. I had TMJ many many years ago and had disappeared .

When I was diagnosed with GCA the jaw pain came back I could not tell whether Prednisone was the cause or the actual GCA disease. Also along with Prednisone the blurry eyes came which I never had prior to prednisone. My rheumy kept on blaming TMJ for jaw pain . . I went to specialists for TMJ no one could really help me .

Currently I am living with the jaw pain not as bad comes and goes and my prednisone is reduced to 1 mg . The blurry eyes come and go . . Doctors unfortunately do not know much about GCA it is all trial and error.

Forgot to add recently on Thanksgiving weekend I got Covid after 3 years of being extra careful. My rheumy said cannot do blood work cause the PCR could stay positive up to 90 days and markers will be all distorted . I keep on testing myself for covid and for the past 3 times I came negative . . Please do not get Covid it is real and it is no joke specially with people like us with Autoimmune issues.

montebello profile image
montebello in reply to Hrblock57

Thank you for sharing this. I understand your frustration. As for COVID, my wife and I are doing everything we can to avoid it, although it makes us feel like lunatics when compared with other people who go about flippantly as if its not a real concern. As for the rheumy, I do feel bad for the physicians, because there's very little it seems they can do to truly validate whether or not a symptom is part of GCA, TMJ, etc. or simply the result of taking the prednisone. I do believe that many of my symptoms are because I'm taking too much prednisone, and not too little -- but I certainly don't want to risk the consequence of being wrong.

Hang in there, and thanks again

Hrblock57 profile image
Hrblock57 in reply to montebello

You do the same hang in there and do not give up !

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