A couple of times now I have experienced jaw pain, it is of short duration and seems to travel in a line along my jaw line. It woke me up the other night but was soon gone. I always have a kind of muzzy head and occasionally a stab of pain in my temple ( not always the same one). I would ignore these minor symptoms if it wasn't for the Spectre of GCA. I have had PMR diagnosed for over a year and am slowly reducing Prednisalone (9mgs). Should I wait and see if this gets worse? I am not sure what test this would trigger anyway.
Jaw pain: A couple of times now I have experienced... - PMRGCAuk
Jaw pain
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SheffieldJane
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Hi - I am new to this so can't give advice but I am also concerned about an full / swollen / engorged type feeling in my neck and jaw line. Also worried. Hope you get advice soon.
Everybody's input is of equal value here Slosh. You, like me, should be flagging the symptoms up to the GP. Even if like me you are bored with your own voice and the lack of real interest our symptoms are met with by GPs in our precious 10 minute slot. 😴
Yes I am not from the UK - a fairly recent immigrant and the 10minute slots take some getting used to.
For me too believe me. My childhood doctor was almost a family friend who came on his rounds regularly to see me in bed with earache. I can still remember his comforting tobacco smell! How times change ha ha.
Haha - I lived in the UK most of my life and I could not get used to 10 minute slots! Most of us remember when the NHS was not in the state it is now and where doctors were able to care for their patients.
Yes - my NHS GP is so frustrated by it. Also I have never had a physical exam by a GP. No blood pressure, no listening to heart, no palpating abdomen if you have a pain there. One checked my ears once and one checked my knee. Feel sorry for them - but think they miss out on diagnostic opportunities.
Being nosy - where are you from originally?
Not nosy. Born in Zimbabwe (the then Rhodesia) - moved to Namibia when Mugabe took over. Then to South Africa - and spent a long time there. Also lived in New Zealand for three years. 'Scatterlingsof Africa'. My children's father was British and they moved here - little point in living on a different continent to them. Immigratingis not the easiest thing to do when you get older.,
I can imagine - although we moved here to northern Italy at about 60. We had lived in Germany for 10 years when our children were small and always said we would return to a German-speaking area when we could (they speak mainly German here). But this region has 3 different ethnic groups living here anyway, the odd new foreign local doesn't make much difference! Has Brexit made any difference to how you feel?
That is so interesting - NorthernItsly and they speak mostly German. No Brexit has made no difference to me - and I don't think it will make a big difference to people here legally from the European Union either.
Slosh: until the end of WW1 it was part of the AustroHungarian empire so everyone spoke German. they were handed over to Italy by the Allies without any care as to how it would work. There are other similar situations where the handed over people retain their desire to "go home" if you see what I mean, many parallels between here and Ireland.
You must miss Africa so much. I was born in Kenya/Nairobi.
I am hoping my children aren't going to force me to emigrate to Australia, one lives there with husband and two children and her sister is going out for a year with her son and new baby. If my son goes I will have to do what you did.
I love Australia. My oldest son is there with wife and my two little granddaughters.?
Mine used to live at Bondi Beach, then the Blue Mountains and now Coff's Harbour, Boambee Beach. I love Sydney and the Blue Mountains especially. Coff's is really rural, my daughter keeps chickens. Round there I like Sawtell and Bellingen. I have had amazing experiences because they moved there. I think I'd miss Europe though. It would be an upheaval to emigrate, the flight's a killer though. It was on a flight to Australia that my PMR began proper - scary!
This thread was all going well, SheffieldJane - until you got to the bit about PMR starting on the 'plane journey - I'm shortly to depart on an 11hr flight to see my son on the west coast of the USA.....! It was at this time a year ago that the stress of working on various projects (to enable me to go on a 2-week break) seemed to trigger the dreaded PMR and I had to cancel at the last minute. I'm hoping it'll all be ok and, on the advice of PMRPro & others, I've suspended tapering until I return! Hoping for the best for this trip - have you made any long-haul flights since your diagnosis?
Best Wishes
I think my symptom onset was probably triggered by a virus. I haven't done a long haul yet but may do Australia at Christmas. I will never travel without a change of clothes and a sick bag and wipes though.
You'll be fine. I got sick in the first hour and then slept and fasted.
Unfortunately - have never managed to sleep on an aeroplane yet.....!
Nytol anyone?!
Sounds lovely. Travelling also kickstarted mine - but after a very stressful year anyway.
That was exactly my pattern too, a few years of relentless stress, my mother had Dementia and another relative had taken advantage of her financially. I had to sort all this out and move my mum to my town to care for her.
She died after 7 years with me. I was so low and ill that I was only going to Australia to ensure that I saw my little granddaughter at least once. I secretly thought I must be dying. It was PMR. The diagnosis was actually a massive relief.
Oh goodness - what an awful and heartbreaking time you must have gone through. Yes - stress and the way handle it it responsible for many illnesses in my opinion.
Woah - that sounds like a really tough time you had Jane - mine was only work-related really. I wrestled with the situation for what seemed like an eternity (in reality, only a few days but at the same time contemplating a disabled life) until my wife made up my mind to cancel the trip. That, plus getting a diagnosis, - as you say gives a huge relief!
DorsetLadyPMRGCAuk volunteer
Hi SJ,
Can fully understand your apprehension, I think anybody on here would be concerned about head symptoms.
Think you probably need to discuss with doctor, and get a test for your inflammation markers to see if they have risen, not that they are always accurate but it's a start. There's obviously little point in a biopsy as you've been on Pred for so long.
In the meanwhile monitor your symptoms to see if they follow any pattern in case they can be attributed to anything else, don't try and reduce anymore, and most of all try not to worry. Easy said, I know, but do try!
Please let us know how you get on.
Thank you for this. I hadn't thought of stopping the dead slow reduction because these minor symptoms are new. There is no re- emergence of old symptoms.
If these symptoms suddenly became really severe would you take a large dose of Prednisalone whilst you sought medical help ? I have often wondered if say 40 mgs might save your sight. This is one patient who is weary of explaining PMR to doctors, especially as time would be crucial.
I don't think I would UNLESS the symptoms were visual - loss of vision, partial or complete, fleeting or longer - and they are symptoms where really you need 999 because it COULD be a stroke. You would see a doctor pretty quickly in that case.
However, what you describe in isolation isn't really what you'd expect from GCA. Jaw pain is usually claudication - it happens with using the jaw, chewing or speaking a lot, and goes away when you stop the activity that is causing it.
Otherwise - I agree with everything DL says in her post.
I only had a minor system before being diagnosed with GCA although I now know that I had severe PMR = it was thanks to my optician that I was referred to eye hospital and thanks to that consultant that i was finally given the news about PMR. I present atypically so please don't assume that symptoms have to follow a set pattern.
Get some medical advise now!!! Taking 80mg of pred didn't save me from sight damage to the despair of my eye consultant. Please better to be safe than sorry - once sight is damaged there is no way back. God bless xxx
I am sorry this happened to you, thank you for the warning and the blessing. God Bless you too.
What would eye-consultant have done differently in these circumstances, 1602?
He didn't specify but did wonder if they had given me higher steroids IV as they had to at the hospital ( I was in for major op for bowel cancer) if it would have stopped GCA in its tracks. Although no evtdence I suspect the trauma of the op could have been a factor? Neither my surgeon or Eye man thought so. I just know that sight is so precious that it is worth being considered a nuisance to get symptond checked .
SJ,
Don't think you're at that stage at the moment. I understand where you're coming from, but self medicating to that level is not something I would recommend.
If you cannot get any satisfaction from GP, then your only other option is A&E, but as PMRpro says it not really classic GCA symptoms, however if you are really worried then A&E it is!
Hi doresetlady
I have a question about the GCA. Forgive me if I am posting my questions here because I did not know where I can post my question. And I really need advice. Since none of the doctors that I go to have any clue and keep dismissing me beacuse I am 38 years old. 
My question is this. If some one began having eye symptopms like seeing a big coin size black spot in the vision center upon waking up in the morning and bending down or try to pick up something is the sign of GCA?
Or when eye symptoms acures with GCA it comes suddenly and it blinds the person right away?
Or it can accure gradually for months as a warning sign to the person?
If the pationt goes to the retinal specialist and being checked truly will the GCA be shown to the specialist specialy if is effecting the sight? Can he see if there is any problem?
Thank you
Hi Mel-21,
No problem. I would agree that at 38 you do seem to be very young for GCA, it's not unheard of, but very unusual so I can understand doctors view.
I can only give my personal opinion/experience but would say that the black spot scenario is not a usual GCA symptom - have you been checked out by optician? Can't say I've heard about bending being a GCA problem
Sight loss, whether full or partial can be very quick in some cases, in fact virtually overnight. Although that is unusual, there are usually some other symptoms present.
Mine was slightly slower, from slight blurring in bottom of eye to becoming fully blurred took under 4 days, but I had been undiagnosed for about 18months with pains, fatigue etc, and over the previous 2 months with the classic head symptoms, tender scalp, jaw claudication etc.
An eye specialist should be able to pick up any problems, if you haven't been checked, then please do get an appointment.
If you want to post, if you look at top of page in pmrgca banner there is a green box, just tap on that and it will take you another page where you can write your post.
Good luck.
Hi Mel-21
Have you been diagnosed pmr or GCA?
Are you on prednisone?
Black spot in central vision...retinal problems, macular degeneration?
Are you just thinking of going to a retinal specialist or have you been to see one?
Not fun to be worried about vision loss.
I sympathize with you.
Dorothy
Hi Dorothy
No I'm not yet diagnosed with anything. I'm just runing from one to another dr office. I'm tired of doing blood works and MRI's.
I don't know how much safe MRI's are beacuse doctors keep ordering them.
I had one brain MRI nine mounths ago, I had neck and back MRI last mounth I had many blood works each time 10 to 15 tubes of blood were drawn.
I've seen five diffrent neurologists , three opthametrists, one retnial specialist and recently that could not help me at all and few days ago I saw a Rheumatologist.
Now The Rheumatologist ordered new and different blood tests again pluse another neck and brain MRangigram. My primery Dr also ordered me another regular brain MRI.
He also referred me to be seen by nerou- opthamalogist at university beacuse he was not believing I might be suffering from GCA due to my age.
I am so frustrated and worried 😩.
If it was not for my eye sight I would not do any tests and imeges anymore.
I don't know what else to do. 😢
My thoughts/fears too SJ - must say I'd carry that dose with me (especially on trip abroad). Have noted PMRPro's advice but wonder what harm would/could 40mg dose do?
Hi Rokerman, sorry If I have spread general panic, I'd have been useless in the war. I imagine Prednisalone in a high dose would interfere with test results. I think it would send me bonkers for while too. Not sure what I'd do if faced with a crisis. I do have a good supply because the pharmacy doesn't really get tapering.
High dose Pred. Seems to be what doctors do if they suspect GCA - all they do?
Doubt it would do much HARM as such - unless you turn out to be one of the people that high doses induce mania. You'd probably be pretty wired. But one small problem could be that if you had to wait a couple of hours to be seen then some symptoms might have moderated in that time and raised blood markers could have fallen significantly as SJ suggests.
Really, the vast majority of patients would be likely to get visual symptoms of some sort in the week before their sight was at risk. Anyone who has ANY such symptoms needs to be assessed for stroke - or at least a TIA (mini-stroke) so you should see a doctor pdq. And if you have visual symptoms - whether 40mg would be enough or not is another question.
Thank you both, as ever this is useful advice.
Cannot offer you medical advice but better safe than sorry! Good luck - hope it's nothing 🌻
Thanks Marlenec, unfortunately PMR gives you no free pass from other ailments, I know my arthritis is waiting in the wings. I find that PMR makes me a bit obsessive and easily alarmed. I've got my 2 year old grandson tomorrow, no time for twinges, he does me a power of good, even if I collapse like my strings are cut when he goes home.👶🏼
Try not to overdo it today 🚼
This post has been very timely for me. I try not to be obsessive but the fear of GCA is pretty constant. I, too, am getting fleeting pain, jaw, temples, headache. But they pass. This forum is like a blessed tonic. Thanks friends.
Jan
Haven't posted before, but feel I must add to this conversation - diagnosed with PMR Jan 2015, then later in the year couldn't open my mouth very wide (for a fortnight), then one morning couldn't finish my small bowl of granola because it was wearing my jaw out... saw GP who instantly put my 6mg Pred up to 60mg. I was horrified but was told "we must save your sight". I had no other symptoms - no headaches or anything. GCA was confirmed by biopsy soon after. Pred reduced to 9mg by April 2016 when I noticed a shadow on the upper vision of my right eye. Went to A & E (first day of Junior doctors' strike) and was sent away with a tube of cream for 'a scratch on the cornea'. Three days later at Boots opticians a photo of the back of the eye revealed I had had a haemorrhage in the optic nerve. I subsequently had massive intravenous doses of Pred too, but have lost most of the vision in that eye. Now I am down to 8 mg and very nervous about the other one!
Oh Hobbitses! What a story yours is. I'm so sorry that happened to you. Thank you for the warning, we do need to be alert. It's appalling that the Junior Doctors' Strike contributed to your loss of sight.
Please get medical opinion re jaw pain , I put up with all my symptoms of GCA for ages, because I was too busy caring for very ill husband.i was diagnosed with GCA and PMR 10 months ago . Treatments working well for me, but I had to start on 65 mg prednisalone, reduced slowly to now 8 mg,reducing 1mg monthly if all goes well , am still on 20 mg of methotrexate. A few side effects, but better than loosing sight .please take care and don't put off seeking medical advice . Islandgirl50
Thank you Islandgirl50, you've convinced me.
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