Chewing

[rogerc]

Hi all. One of the symptoms of gca is jaw or tongue pain when eating. Can someone tell me where abouts in the jaw or tongue the pain is. The best way to describe where I have started to get pain is under the back of the tongue and it's making chewing difficult. Could this be part of gca.

[DorsetLady PMRGCAuk volunteer]

Hi rogerc,

In my case, my tongue wasn't painful, but whole jaw was. Initially thought I had something wrong with teeth, but then it became extremely painful when chewing, to the extent that even eating a sandwich became so difficult I just gave up half way through.

However, have to say I didn't know at that time I had GCA or PMR or both as undiagnosed so let it go on too long!

My advice would be please get it checked as yes it could be GCA. Better safe than sorry!

[rogerc in reply to DorsetLady]

Thanks DorsetLady

I did see a different rheumy last week and he said pain not in jaw so it's not the gca causing it. Also all my other pain in temple and neck not gca. The normal rheumy had first said the pain was referred from my arthritic neck then that it's due to blood pressure but my GP is happy with the BP. They just keep guessing while I am now taking 6-8 co-codamol a day. Not happy with that because of side effects.

[DorsetLady PMRGCAuk volunteer in reply to rogerc]

Know what you mean about co-codamol- they certainly aren't the nicest things to take!

Actually GP initially thought all my head pains were due to a trapped nerve from a misdiagnosed frozen shoulder. Turned out they weren't, so although I don't want to be alarmist, they don't always get it right.

Have you had recent ESR and CRP tests? What level of Pred are you on? Think you need to keep on top of this, and certainly should you get any eye problems then you need to react. Hope I'm wrong.

[PMRpro Ambassador in reply to rogerc]

He's not correct in that assertion - tongue pain IS, although relatively speaking rare, a sign of GCA. It all depends which arteries in the head and neck are involved.

They are also not correct in saying it can't be GCA if you are on pred - only a high enough dose will manage the symptoms. Too low a dose will allow a flare of symptoms. While you are on pred the ESR/CRP may not rise again, even if they were raised beforehand. About a fifth of patients never have raised values at all.

DL has said the rest.

Really think you need a different doctor.

[rogerc]

My ESR and CRP tests have been OK since original tests last September and biopsy showed I had gca. Had latest blood tests done last Tuesday and am waiting for results.

Was pain free for 6 weeks while on 60mg of prednisilone but temple eye and neck pain gradually came back since I started reducing. Currently on 7mg. Docs are saying pains can't be gca because I'm on pred. The pain is the same as when I was diagnosed but in a few more places as well. It is bad every morning and cocodomal ease it. I have to take more during day to get things done and the pain comes back most evenings and I take a couple of tabs before bed to get to sleep

[DorsetLady PMRGCAuk volunteer in reply to rogerc]

Hi again Roger,

Sorry to disagree with medical profession, but if you have reduced from 60mg to 7mg within a year there is every possibility that it is GCA!

Not only do you have to get the inflammation under control initially, but you have to keep in under control as you reduce, which is why we always advocate doing it slowly. It took me almost 2 years to get from 60mg to 7mg, and although men do usually recover quicker than ladies, personally I would say yours was too quick.

Methinks you are having a flare whether the Docs agree or not! Sorry.

Another thing to consider is 7mg can be a difficult dose at the best of times, it's about when your adrenal glands should start kicking in, so you don't need any added stress at that level.

You definitely need to discuss your situation when you get your blood results.

[rogerc in reply to DorsetLady]

Hi DorsetLady and Lesley

I just wish I could understand this whole gca thing. If the ESR and CRP levels are very low is it right that I can still have the inflamed arteries that cause the pain , if so is my eyesight still under threat. I've been told so many different things that I get more confused as the months go by. I was on 60mg for 6 weeks because of lack of info from rheumy then dropped straight to 40mg and pain started to return. Could that have been the problem? Staying on 60mg for too long (which caused other problems) or dropping by 20 mg in one go?doctors cover each other and will not give answers that will contradict other doctors.

[DorsetLady PMRGCAuk volunteer in reply to rogerc]

Hi again,

Unfortunately, some people never have raised blood markers, which seems to throw the medical profession into complete disarray, because they base so much credence on them!

You can have inflamed arteries with no raised markers, but the symptoms obviously show there is something not right. If you are taking enough Pred then you shouldn't be in significant pain, a little maybe but liveable with, certainly not enough to warrant taking co-codamol every day.

High doses certainly cause side effects, but reducing too quickly is counter productive as you are not controlling the inflammation- which is the main aim of Pred.

Reductions from 60mg down to about 20mg are usually done in 5mg steps. To me a 20mg drop seems unbelievable when treating GCA.

Trouble is, many docs seems to want you off Pred almost as soon as they've started you on it - because they don't like the side effects, but unfortunately it doesn't work like that.

Once you are on Pred, the risk to your eyesight is obviously a lot less than if you're not on it. But, and it's a fairly big but, you need to be on a large enough dose of Pred to control the inflammation at all times until the illness goes into remission.

Hope this explains a bit more.

[rogerc in reply to DorsetLady]

Thanks for info it's helping me understand. I expect my blood markers to be low again as they have been ever since the the first test when they were very high. So it's possible I could still have inflamed arteries. All I have to do is persuade my rheumy of this possibility when I have low markers. Don't want to go back to 60 mg again though, the last time I was pain free.

[lesley2015]

Hiya

My pain was jaw, face, eye socket bones, and head ache that's the only way I can describe it - i wanted to grind my teeth to stop the pain (no tongue pain) - the dentist and doctor decided it was TMJ so I had to wear a plastic tooth guard at night on my top teeth grinding - i explained that I did not grind my teeth, that didnt work so then they made me one for the bottom teeth, when I questioned the actual face pain I was told it was sinusitis, for 2 years this went on until the PMR was so bad and the Rheumy made the connection- so fortunate I did not lose my sight!

If in any doubt see your GP and if not happy - do not wait like I did!

[casse]

I had slight jaw pain on each side, but the worst, was it was so tiring to chew. Could only chew one or two times and have to rest for about 10 or 15 seconds before chewing one or two more times. Was on shakes for over a week, Finally got the biopsy which is the gold they say. Started on prednisone in Oct 2014 for 15 mgs then that Dec. up to 60 for GCA only got down to 15 this past January but back up and currently still on 34 mg. So it is a different battle for everyone, others have been able to reduce much sooner, but I would get the temple and EYE pain and other symptoms back plus CRP and Sed. rate would be elevated when I would experience the symptoms again! It is tough but hang in there people are rooting for you this site is just awesome!! Can't thank everyone enough for all their input they have given me the past year and a half 🙏🙏🙏