Toothache or GCA: Hello all you wonderful people... - PMRGCAuk

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Toothache or GCA

misspops profile image
28 Replies

Hello all you wonderful people. I come to you first before I call the doctors.

I've had PMR for nearly four years now, down to 3 mg of prednisone, and feeling pretty good most days. However, yesterday, rather suddenly, I developed an ache on the right side of my jaw. I thought a tooth ache, but couldn't pin point which tooth is was, in fact at times it was coming from a place where there was no tooth. It would go away, then come back, at one point it came back very strong, and was concentrated around one tooth on the bottom jaw. A bad tooth is what I am thinking. No pain last night, but this morning the pain returned for a few minutes in the general area, (no one tooth).

So my question is, before I call the dentist, does GCA affect just one side of the head, or is it bilateral like PMR is?

Thanks so much.

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28 Replies
winfong profile image
winfong

GCA can be a lot more bilateral than PMR as I recall (and confirmed on Google). I think I'd just go to the dentist as a first step, then tale it from there.

piglette profile image
piglette in reply to winfong

I thought GCA was a lot less bilateral?

PMRpro profile image
PMRproAmbassador in reply to winfong

PMR is almost always bilateral - and that is considered a criterion by some doctors.

winfong profile image
winfong in reply to winfong

Ugh - forgot to read before posting. I meant "less." Gotta tell ya, my brain fog is off the charts today

PMRpro profile image
PMRproAmbassador

GCA may be bilateral or unilateral - but usually GCA pain in the jaw is in response to using it, chewing or singing/talking, as it is a type of claudication pain. What you describe really isn't typical of GCA.

misspops profile image
misspops in reply to PMRpro

Thank so much. Guess I'm off to the dentist.

SnazzyD profile image
SnazzyD

The dentist is a good call in any case because it would add a piece to the diagnosis jigsaw. The fact that it is so pinpointed points to dental but I’m not a doctor. Just for interest, there is also steroid induced dentine hypersensitivity which I have and the dentist can only nod in sympathy. This leads to a sudden intense pain in a row of teeth or even the whole lot for a few minutes, for me during hot food or drink. I eat tepid food now because it is sooo painful. It is never in one spot and doesn’t go into the jaw or temple like GCA did and isn’t affected by chewing like GCA. It has also never changed since it started around 30mg Pred and I’m now in remission.

misspops profile image
misspops in reply to SnazzyD

Sorry for you. No hot or cold drinks. Cold is a problem for my teeth. One of my side effects from the covid vaccine, was that all my teeth ached, off and on for many days. I told my dentist, but he hadn't heard of that one.

SnazzyD profile image
SnazzyD in reply to misspops

Luckily cold is fine for me and not with the Covid vaccine but I did get a horrible neuralgic headache for a week. Had my second on Monday and it’s just ramping up now 🙄 .

Bling123 profile image
Bling123 in reply to SnazzyD

Please tell me more about this sensitivity please. My teeth are very sensitive at the moment even eating a banana hurts . All of them top and bottom I have special toothpaste from the dentist. Is there anything I can do ? Thanks

SnazzyD profile image
SnazzyD in reply to Bling123

See below in my reply to Rimmy which I meant to reply with to you. Sorry, been a long night.

Bling123 profile image
Bling123 in reply to SnazzyD

thanks

Rimmy profile image
Rimmy in reply to SnazzyD

Yes I can relate to that 'dentine hypersensitivity' creating generally touchy teeth even where there is no obvious 'cause'. I have also however had a 'rush' of sudden dental issues which my dentist thinks unusual - except for the long term Prednisone use - 5 years now and some side effects possibly becoming cumulative. He 'varnished' my teeth with a coating designed to assist with the generally thinning less & 'resistant' dentine.

SnazzyD profile image
SnazzyD in reply to Rimmy

Try thesepubmed.ncbi.nlm.nih.gov/278...

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

Rimmy profile image
Rimmy in reply to SnazzyD

Thanks for these links - interesting !! Luckily for me my pain - at least for generalised tooth sensitivity hasn't been as extreme as for some described in the articles - but is certainly a 'thing' which can be quite unpleasant. My dentist did the 'right' thing then applying the varnish and has recommended a toothpaste which he will give me a script for which is very high in fluoride I think. My worst problem recently was the oddly quick development of some cavities and the 'failure' of a bridge which I have had for 30 years !! - but now looks like it may be redeemable - so all is not lost. Same old story though - dealing with side effects - and wishing I could reduce my Pred dose which I currently still cannot without my CRP jumping up very fast. Hoping my so far '5 year sentence' will perhaps tail off sometime soon - or hopefully 'ever' ....

strawclutching profile image
strawclutching

Just to note, my GCA jaw pain was only on one side; the same side as the ear and scalp tenderness, also swallowing issues. But then I've never followed any general rules. If you only have jaw issues and nothing else head related, it's more likely to be something other than GCA but couldn't say for sure.. I have a friend diagnosed with GCA who only had visual disturbances and no other symptoms so we're all different. I saw my dentist first who suggested TMD and led me down the wrong path. But more detective work required in your case. goo d luck.

Nightingales profile image
Nightingales in reply to strawclutching

I was interested to see your dentist diagnosed TMJ because I am going through the same thing. I have had terrible earache and jaw ache. GP first, prescribed antibiotic and drops without success. Next dentist who has diagnosed textbook TMJ. It’s no better after trying to rest and do the exercises. I have been struggling with a possible GCA diagnosis for months. I have so many symptoms, Eyes diagnosed as cataract, neck pain as cervical degenerative disc, sore scalp and lumps as excema. I have had the US, which was negative but I was on 30 mg. it’s all such a puzzle. The strange thing is that I feel better in myself than I have for a long time except for all this above the neck pain. Sorry for the long post. I am interested in how you got your diagnosis.

strawclutching profile image
strawclutching in reply to Nightingales

It took two visits to the GP - one with the Practice nurse who looked at my throat and ear but couldn't 'see' anything and advised Paracetamol and rest for possible virus. Then I googled my symptoms and came up with GCA myself but was feeling pretty terrible by this time - 3 weeks after initial GP appointment. I was waiting for 'virus' to clear itself. Turned up at A&E having lost faith in GP and was diagnosed from blood test - ESR reading was 63 and I was started on 40 mgs Prednisolone straight away. Felt better within a few days - until side effects kicked in. I realise GCA is hard to diagnose, but even if there's a slight suspicion you should be having a blood test for ESR and CRP levels at least. The risk of waiting is too dangerous. Given that you're feeling well, I would take as encouraging, but maybe it's worth sharing your GCA concerns with your doctor?

Nightingales profile image
Nightingales in reply to strawclutching

Thank you. I have regular blood tests and they were very high when I flared last Nov. Now normal although it took 6 months. That’s part of the difficulty. I am now down to 12.5. I will write to my rheumatologist again and list my concerns....again. This is the most frustrating disease because the symptoms are so vague, especially because I have degenerative spine and osteoarthritis. Heigh ho, will just plod on. Thank you so much for your reply.

strawclutching profile image
strawclutching in reply to Nightingales

No problem, and good luck. 👍

SnazzyD profile image
SnazzyD in reply to strawclutching

My jaw pain was one sided too, on the side that had 90% of the other symptoms. The better side seemed ok but I realised it hadn’t been but the bad side made it seem ok.

strawclutching profile image
strawclutching in reply to SnazzyD

I totally get that. I used to chew on the 'painless' side until that started to ache too. But could have been it wasn't used to double the exercise.

brambles22 profile image
brambles22

When my GCA started I had toothache in one the bottom left hand side of my mouth whilst the headaches were mainly concentrated around the right temple. I was put on a high dose of steroids initially and the toothache and headaches subsided.

strawclutching profile image
strawclutching in reply to brambles22

Isn't it strange we're all so different. Glad you got sorted.

pats000paints profile image
pats000paints

Get it checked out by a dentist as soon as possible just to be sure it's not GCA. It doesn't sound like it, but if it's a tooth, then it needs attention.

misspops profile image
misspops in reply to pats000paints

Hi, I went to the dentist today, as the pain started to concentrate around two teeth, on the back mandible. They took several X-rays. but couldn't see a any reason like decay, or abscess to cause the pain. I told him about the PMR and the worry about GCA, and although he didn't say a word about that, he did give me a prescription for antibiotic in case there was something he couldn't see on the X-rays. I thanked him and gave him some vegetables from my garden.

HeronNS profile image
HeronNS in reply to misspops

I tend to blame pred, although I am not sure. The jaw seems to be particularly vulnerable to changes in bone density, and I have wondered whether my teeth were becoming sensitive because of growing weakness in the jawbone, which was stopped and reversed by my save my bones protocol, especially taking Vitamin K? Plus some gum recession which started with pred but also seems to have halted although I don't know if this can ever reverse. I do know my dentist no longer seems to think it necessary to encourage me to get work done on exposed dentin. :D

pats000paints profile image
pats000paints

It can affect one side of the head. If you didn't have PMR then it wouldn't be a worry, but you do, therefore, see a dentist just to put your mind at rest. My GCA presented as a one sided head pain and I couldn't bear to look at the sunlight. Went straight to hospital and was put on high pred immediately. It knocked it back a treat and it's never come back.

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