Jaw pain: Does anyone suffer pain in their jaw. I... - PMRGCAuk

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Jaw pain

Suffererc profile image
19 Replies

Does anyone suffer pain in their jaw. I have in the past suffered from pain when eating and GP raised my Pred to 30mg.

The pain I have now is slight and intermittent up to yesterday when it lasted all day and kept me awake at night. Today it is still there but still only slight.

I have have recently had a flare (2 months ago) and was put back up to 10mg now tapered to 81/2mg.

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Suffererc profile image
Suffererc
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19 Replies
PMRpro profile image
PMRproAmbassador

So you are saying this is constant pain rather than pain when using your jaw? Could it be dental? Though I know in the UK dentists are still a rare breed ...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

many still in hibernation!

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Just been to mine - worked all the way through, first month was 3h per day doing emergencies and then back to normal. As he said, they use PPE anyway and everything is cleaned between patients.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Quite.... but as you know - everything seems to be all too difficult over here!

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Tell me about it. Including pay rises for the people who have risked their lives for the past 4+ months. Think France is giving them 10% ...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

typical I'm afraid!

Suffererc profile image
Suffererc in reply to PMRpro

As said on TV today, we think more to protecting the NHS than we do the patients!!!

PMRpro profile image
PMRproAmbassador in reply to Suffererc

Pardon? I'm not sure I understand your point?

Suffererc profile image
Suffererc in reply to PMRpro

In the UK People have been turned away or refused life saving treatment if it not Covid 19.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi

Have a look a look at this -

bupa.co.uk/health-informati...

Have you tried paracetamol?

Suffererc profile image
Suffererc in reply to DorsetLady

Thank you for that. Yes I take paracetamol which prompted my question to PMRpro. Am waiting for dental appointment, mine cancelled in June. Like many GPs they seem to have been hidden away for posterity.

Malsy profile image
Malsy

Hi, I am suffering jaw pain. It was one of my symptoms, as just been diagnosed GCA. It was there most of the time without eating, on my left side. It is now in both jaws when it comes back. Teeth are all ok and up together. This is all very new to me. Just over 3 weeks ago it all started. Flu like symptoms, temperature, neck shoulder, all over aches really. Headache was severe and jaw pain. Now been on Pred for 1.5 weeks 60ml. It helped straight away, but still pain lurking. Then 4 days in had a terrible attack all over again, jaw, neck back the lot. Then yesterday, jaw, neck, headache. . Debilitating pain when it comes on. So I am with you on this one, but it is not necessarily related to when eating, which it is said to be the case! So now confused.

Suffererc profile image
Suffererc in reply to Malsy

Thank you for replying. I am pleased that it is not on my head. The pain is not severe just irritating because it is continuous. Am trying to get dental appointment, but the dentists are all hidden away from us. Wait till they want our money again.

PMRpro profile image
PMRproAmbassador in reply to Malsy

That is really interesting - did they comment about it when making the diagnosis? Had you had no warning of the jaw involvement before?

Malsy profile image
Malsy in reply to PMRpro

It all came on at same time, about 4 weeks ago. Flu like symptoms, headache, and the jaw pain, fevers. My Dr, accepted it as a symptom, but saw different Dr yesterday, and she said it's only when eating that there is pain, that it is connected to GCA . But like i said to her, i wouldn't know because when the pain is there, it's severe and i cannot eat to find out if it hurts when eating! If you know what i mean... She seems to be going back to thinking it might have been covid! As that's the first thing they obviously thought with the fever. Was tested, came back negative. My actual Dr. Already said it was GCA, after exploring all other possibilities. Possibly even PMR too in my opinion , as had symptoms of that too. But because of having fibromyalgia, the symptoms are similar in ways. But been living with fibro for 5 years now. So confused as to what's going on now. Have to edit my post again. I have been on pred 1.5 weeks. I am getting everything wrong with the side effects of the steroids. Sorry. No sleep, cognitive symptoms are terrible, and very unbalanced. But I can put up with that, it's the pain I can't! Early this morning another bout of debilitating pain, head jaw neck shoulders. It is usually this bad when near to taking next lot of pred. Ok now, managed to get to town after a few hours of it lifting. It's awful when you get passed to another dr, and they seem to think another way. But my actual Dr, I've spoken to every few days since getting ill, and she knows it responded to the steroids. But nevertheless not gone. Do you think that is normal. Taking zappaine too for the pain that's left, which I take for Fibro anyway. Seems to work ok. But so new to all this, and very scared. So thank you for all your help.

PMRpro profile image
PMRproAmbassador in reply to Malsy

If the blood supply to the nerves in that area is compromised enough it could cause pain - claudication is the early stages, later on ischaemic pain can be there all the time. Does it improve with pred? Then it is due to inflammation somewhere - not fibro. PMR can be a symptom of GCA - same disease, just different places on a spectrum.

30mg is a very low dose for suspected GCA - will they let you try a bit more? 40mg is the bottom of the range. And maybe try taking the extra later in the day to see if it stops the pain that returns before the next dose is due.

Malsy profile image
Malsy in reply to PMRpro

It does improve with pred. When near time for dose, the big pains come on. Take dose and about a couple of hours lifts a bit. Then pain killers seem to sort the remaining pain. I am on 60 ml pred. Not 30ml. Which is OK. 2.5 hours sleep again last night! Oh joy! Hope you well. Thanks for replying. X

PMRpro profile image
PMRproAmbassador in reply to Malsy

Sorry - what on earth made me think 30mg???? But while 60mg is a usual dose for GCA it is not always enough.

Malsy profile image
Malsy in reply to PMRpro

That is a good point, it might not be enough! But drs ,they always want to Keep it to a minimum, or start getting you to reduce. She agreed with me, luckily for me to leave dose as it was until I see rheumatologist. Should have rheumatologist appointment soon. Let's hope they can help. X

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