Hi. Am on 6mgs of Pred. Not without problems with muscle pain in thighs, hips etc but not too bad. Have tried to lower the dose but think this is my limit at the moment. Had PMR for 4yrs now. 67yrs old.
Over a few weeks now I have had what I first thought was earache in one then both ears. This has now developed to definite jaw ache/stiffness which is worse first thing in the morning but I am aware of it when eating and is more noticeable again in the evening. I have no temple tenderness or headaches. It is not bad enough to be dominating my day but it's there.
Can anyone advise please. I'm aware of GCA but don't want to be alarmist.
Thanks.
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wendyanne49
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I experienced this symptom 2 years ago, before I had even heard of Polymyalgia R or Giant Cell Arteritis. I was sent to hospital from the GP's surgery and put on a heart monitor for 24 hours.apparently heart attacks can present like this in women. Needless to say all was clear and the pain went as mysteriously as it came. I wonder if a dental X Ray would be a good investigation, to make sure that there is no infection present, from the teeth? I now wonder whether the PR was beginning to make itself felt? I was only diagnosed a few weeks ago. I reminded my GP of this yesterday as part of expressing my Giant Cell fears, I didn't get much back from him. I've been advised to see my optician to check out my eyes. This is a serious condition right? All I get concerns about from medics is taking steroids and how I must get off them. Research and self care is all they leave us with. Good luck! I bet it just fades like mine did to be replaced with another odd manifestation of this horrid condition.
There are a lot of things that can cause those sort of symptoms and it is definitely worth mentioning it to your doctor. I had jaw discomfort - more it got tired quickly when eating than real pain - with "just" PMR which all resolved with just 15mg. Keep an eye on it and perhaps keep a diary to see if it gets worse - of course, once you are thinking about it, it may well seem worse!
Would agree with PMRpro, monitor your symptoms, it could be many things other than GCA, which is obviously the one thing in most people's mind. It could be an infection or virus, my DIL has had a virus for the last couple of months which has affected her ears, and she can't seem to shift it - and she's only in her 40s and generally very fit.
I never had any problems with my ears prior to GCA diagnosis, many other things but not that, but as we say - everybody is different!
Of course, if things get worse then back to Dr.
Good idea to stick at 6mg for time being - I found things quite difficult when around that level and down to about 3mg. Also been on Pred for over 4 years. Tried to get to zero a few weeks back, didn't feel too good, so back to 0.5mg for a few more weeks and then try again.
Wendy, if it were me I would definitely get that new jaw pain investigated, not least to rule out any sign of lurking GCA but also any sign of an ear infection or tooth infection as the cause, especially as you say it has been going on for a few weeks. And rather than trying to "lower the dose" from 6mg at this stage, with the pain you are still experiencing in your thighs and hips, again if it were me I would consider upping the dose to see whether things resolve.
Perhaps I'm being over-cautious here, but certainly, one of my symptoms leading to GCA/PMR diagnosis was the reluctance of my jaw to want to chew any food, and that, together with the head pain and other GCA symptoms resolved within hours of my first 40mg steroid dose. Headaches and temple pain are not a given with GCA. I understand your wish not to be alarmist but where GCA is concerned, far better to investigate any sudden appearance of GCA-type symptoms than take the risk of the alternative. Best wishes for a good outcome.
Thank you all for your advice. Can rule out dental problems. Full check up only two weeks ago. Don't think it's a virus as no other symptoms are present. Will do as suggested and keep a diary to see how things go. I have v regular optical checkups as I developed glaucoma and have new lenses fitted that have relieved the optical pressure so all good there.
The sun is shining and I'm off out to meet a friend for coffee and chat so it's a good day. Best wishes to you all 😄😄
GO TO SEE YOUR DOCTOR URGENTLY. I notice my jaw pain in February 2016 and went to see my doctor who diagnosed possibly GCA. He put me on 40mg Steroids immediately and also sent me to Ophthalmologyl for a biopsy on my temporal artery at top of my forehead. Luckily it was negative but there was indication of some chronic inflammation. They are now reducing my Steroids and I am now down to 10mg
I had PMR just 2 years before this happened and I was down to 1mg Steroid!!
My opinion falls somewhere between the advice to wait and monitor how you're feeling and the advice to see your doctor right away. I think you can continue to monitor a little longer to see if symptoms worsen, but as soon as it concerns you even more, call the doctor treating your PMR and tell him/her particularly about the jaw pain when chewing which you know is not dental related. Ask for blood test of CRP and ESR.
I had PMR for a year when I experienced exactly what you are describing: pain in ear I thought was an infection from a lot of time in the pool (swimmer's ear we call it here). Then the mild jaw pain started and I thought my scalp was a little tender, but I had no noticeable headache. My rheumatologist responded to my phone call with instructions to take 60mg. of pred right away and again the next morning and come in for a blood test in the morning. The blood test showed elevated CRP (57) and ESR (55) which he took as a confirmation of his diagnosis of GCA. I had a temporal biopsy on both sides a week later. It did not confirm GCA, but it has been assumed and treated as such. As I went through the tapering down to 20 mg. I had relapse and that was when I experienced the severe headache aspect of GCA.
Now 4 years later, I think it is beginning to go away as I am now successfully down to 4 mg. with good blood tests, after several previous unsuccessful attempts to get to this level.
I hope you don't have GCA, but do remain aware of your symptoms and do call your doctor if you remain concerned about those symptoms. Best wishes to you.
An update on my jaw pain situation. My PMR decided to flare nicely on my 6mg so with the added jaw pain I saw my gp. She increased steroids up to 30mg and advised me to monitor the jaw pain. After a week there was no improvement so although she isn't convinced that the jaw pain is definitely due to GCA, she decided to play safe and I have been on 60mg for five days. She accepts that a biopsy isn't a guarantee of a definitive diagnosis. I have to contact my gp on Wednesday and report the progress. Things are much easier. Still a little niggle in the jaw and I have had so much energy that my house is gleaming and all jobs are up to date!!!
My question is this? My gp has obviously erred on the side of caution. If the jaw pain is NOT due to GCA and is merely inflammation in the jaw, will I do more harm by being on this high dose? Should all the jaw pain totally disappear within these five days and if it doesn't, is this a suggestion that it is NOT due to lurking GCA?
I only had an elevated ESR at the onset of my PMR. Every blood test since has been in the normal range. I've always presumed that is because of the medication doing its job.
My PMR symptoms are hardly there. A little aching in my hips and thighs but that is more due to the extra housework I've been manically doing!!
Also, what is the reduction pattern from 60mg? Have only ever been as high as 30mg over the past 4years.
Your advice and comments would be much appreciated. I suppose I don't want to think I've made a fuss and resulted in taking unnecessary medication.
As there is and can be no proof one way or the other your GP has to err on the side of caution - since the risk is of loss of vision apart from anything else. The chances of a positive biopsy after a couple of weeks of high dose pred are fairly low - they are only positive in about half of patients anyway.
Your PMR symptoms SHOULD be hardly there on 60mg! But do try to resist the manic desire to do housework - even though you can't see anything, GCA is a serious illness and your body is under attack - it needs rest to give it the best chance to heal and recover.
This paper explains a lot for you and includes the reduction scheme this group used which they found worked better than the usual approaches which tend to be faster in the later stages.
The pain should be markedly better - but many people find they are never entirely pain-free so some residual pain is not a sign that it isn't GCA. Are you under a rheumy? You really should be with possible GCA.
Many thanks for this sensible response. Because I have no official diagnosis of GCA my brain hasn't accepted that I do really need to take things a bit easier than normal. I'm sure you are right about that. I phone my gp today with a progress report and she will advise accordingly. My gp has always been very good and I have never been referred to anyone else during the last 4years. I have been satisfied with her care.
There is a very good local support group here in Suffolk and perhaps it's time I joined them and learn from their experiences.
Another glorious sunny day here. Hope your day is a good one. Thank you for the support 😄
Thank you. I have read the article and it's obvious that as I have been on steroid medication for so long now that a biopsy would probably show an unclear result. So my gp is basing my treatment on my symptoms (jaw claudication). I accept that it isn't an exact science in the absence of a positive TAB.
I share most people's concerns about high dose and long term steroids. I have already developed glaucoma and have had both lenses in my eyes replaced to help lower the ocular pressure. It has worked.
You obviously believe I should ask for referral to a specialist. I'll give that some serious thought. Once again, thank you for your advice.
That is most rheumatologists' opinion for GCA - if you have a really clued up GP you may be OK and yours is obviously clued-up. But it is not always as simple as it sounds in GCA - GCA can be far more widespread than just cranial arteries. It may be a good thing to have speedy access to a specialist but on the other hand - they aren't always too helpful either.
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