Jaw pain with GCA

[Robinre]

Can someone explain what the "jaw" problems are like when one suspects GCA. I thought I had TMJ problems but they are not getting better. Don't know whether to start spending a lot of money at Dentists when it could be something really serious. I don't want to always be thinking the worse as I did with my dry eyes and again with headaches (that were residual Shingles pain and the neuralgia)that were nothing but just that. I hate living in fear for that dreaded GCA because I hear and read that 35% of those diagnosed with PMR could get this.

[PMRpro Ambassador]

The jaw pain associated with GCA is what is called claudication: it happens when you are using your jaw chewing and sometimes even talking a lot or singing will cause it. It then goes away quickly when you stop the action but returns when you resume.

There is no point worrying about it - it will happen or not. Once you are taking pred and the PMR symptoms are well managed the risk of developing GCA is less - but not entirely banished as some doctors will try to tell you so remain vigilant.

I'd have thought a figure of 1 in 3 progressing from PMR to GCA was very high - I have read about 1 in 7, something between in in 10 and 1 in 5 is often quoted. One in three patients with GCA may have symptoms of PMR as well - but that isn't the same as saying that many PMR patients develop GCA.

[DorsetLady PMRGCAuk volunteer]

PMRpro has given good advice.

These are figures quoted in UK for PMR/GCA cross-over -

About 1 in 20 (5%) of those on treatment for PMR [or 7 (35%) out of 20 people with untreated PMR] are likely to develop giant cell (or temporal) arteritis, a related condition causing inflammation of arteries.

One test for jaw claudication is to chew chewing gum for 2 mins to see if jaw aches. If it stops hurting when you stop chewing, it could be a sign of GCA. But you probably need other symptoms as well to confirm.

[Hidden in reply to DorsetLady]

I just looked for the gum study and they are starting a proper study in limoges. Submitted in July. It will be interesting to see what happens with it with more subjects.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Yes it will.

[Jampad]

I had terrible pain in my jaw. When I tried to chew anything I could only take about three bites of anything before the pain was so excruciating I had to stop. I ended up living on porridge and soup. I lost an awful lot of weight too,

[Luciejc]

I was diagnosed with GCA after having my second Shingles vaccination on July 2, 2019. A biopsy later confirmed the diagnosis.

My initial symptoms were fever, body aches, headache and fatigue. I was given a muscle relaxant and went on vacation. I was miserable when I returned home. Blood work found inflammation and was prescribed 10 mg of Prednisone.

Began getting worse headache,neck pain and jaw pain. The jaw hurt when chewing and pain remained. Also had blurry vision. After researching, I became convinced I had GCA. Went to a rheumatologist who immediately ordered the biopsy and prescribed 50 mg of Prednisone. 2 days later on August 30th, I was told the biopsy was positive. I still keep complaining about the headache, jaw and neck. My blood work is normal so both rheumatologist and dentist day TMJ. A stronger muscle relaxant was prescribed a week ago and I do feel somewhat better. I am now down to 2 weeks of taking 15 mg and 20 mg of Prednisone on alternate days. Hope this helps...Jean

[SnazzyD]

When my GCA got going the jaw pain was like cramp in the legs when you’ve done too much exercise and you have to stop, except it was in the jaw when I was chewing. It was like nothing else I’ve ever experienced. The Pred effect on my muscles then caused problems with my sternocleidomastoid muscle (common even without Pred) which produced other GCA like symptoms like tender scalp, temple pain and base of skull pain.

Seeing a dentist is never wasted and you need to rule out teeth problems anyway. I think statistics need to be taken with a pinch of salt in the end as you have no idea which camp you’ll be in and second guessing it is the way to permanent anxiety. I discovered this after getting cancer 15 years ago and the stats weren’t good but I had to let it go as it was making life a misery.