Jaw pain is it due to PMR or gca

[Craftnut68]

Hi I haven't posted for a few weeks, I have had nasty chest infection for 3⃣ weeks and been feeling awful. Think it has made PMR worse. Can anyone help with some suggestions to help jaw pains. I feel I want to take all my teeth out. Unfortunately I dont have a good relationship with tabs. I have tried both tramadol and nefopam both of which make me feel very sick. I had a temporal artery biopsy on 20th November 15 which I was told was negative so therefore no gca. I lost left hand peripheral vision in both eyes on 21st October 15 which I was told due to a small stroke caused by blocked artery in back of brain. I'm convinced I do have gca causing the jaw pain or does PMR cause jaw pain too.

[DorsetLady PMRGCAuk volunteer]

Hi craftnut68,

Your chest infection could well have caused your PMR to flare - it doesn't take kindly to any other stress the body is under. Have you tried increasing your Pred (just by a couple of mgs) to see if that helps? However, if you are getting jaw pains, then, as you know than can be an indication of GCA. Whatever, you need to seek advice from your GP.

As for your biopsy - being negative doesn't mean you don't have GCA. It could be that the Pred had reduced the inflammation enough for it not to show, or the piece of artery removed was not affected.

[Craftnut68 in reply to DorsetLady]

Hi DorsetLady I haven't tried increasing prednisolone as I'm not sure about changing the dosage without Gp,s say so. I feel I've had a raw deal with my care regarding PMR and gca I was diagnosed with PMR on 13th nov 15 and neurologist thought perhaps gca hence the biopsy. I was started on 60mg precnisolone for 4 weeks and was then reduced by 5mg every 4 days until I got down to 10 mg which I have been on since 6th jan 16. consultations in our surgery are all done over the phone so o never get to see doc. He tells me when to make appt with nurse to have esr checked and I have to phone him to see what result is. He did say I would be on 10mg for a year before starting to taper down. I was never given a follow on appt with the stroke clinic doc or eye clinic never seen a rheumatologist. I feel I've been left to read up on things myself. I only have 5 mg tabs so difficult to increase. I'm very much in the dark with all this

[DorsetLady PMRGCAuk volunteer in reply to Craftnut68]

If I read this 2nd post correctly, then I would say you have reduced much too quickly. You need to get some sense from someone, and if not from your GP or Rheumy then perhaps you should consider a visit to A&E. It's not the ideal scenario, but it might be your only option.

[baxternoni in reply to DorsetLady]

I agree with you. I was diagnosed a little over a year ago. I was also placed on 60 mg of prednisone and it took 14 months to finally get off it. I was also given Actemra, which I continue to take. I also have bloodwork every month to check Sed rate and CRP.

[Sheilamac in reply to Craftnut68]

OMG! Way too quick! No wonder you have problems. Sadly the GP's don't all know a great deal about PMR and GCA. I don't think it's painkillers you need, it's Prednisolone! And more than a couple of mg.

I would be scared I was going to lose my sight!

[PMRpro Ambassador]

PMR itself rarely causes jaw pain - it is a sign that the arteritis is more GCA in nature.

Are you sure the "chest infection" is a chest infection? Cough and chest discomfort can be a sign of GCA affecting the chest arteries.

A negative TAB does NOT mean it isn't GCA, it means either a) they didn't find any giant cells in the section they examined or b) it isn't currently affecting the temporal artery. If they find giant cells it is 100% sure it is GCA. Not finding such cells just means they didn't find them.

Visual loss is associated with GCA affecting other arteries supplying the optic nerve. Did it not occur to them that possibly the stroke is due to GCA? GCA does affect the occipital region of the brain - that is at the back of your head - which is the visual processing centre. It is also associated with normal ESR values:

ncbi.nlm.nih.gov/pubmed/199...

I really don't know what to suggest other than going to your rheumy and insisting there is something not right and will they please do further imaging to rule out vasculitis of some sort. Or find another who will listen. One lady was told, like you, that the TAB was negative so "you don't have to worry about GCA" - by one of the supposed top experts in the UK. She persisted, a PET-CT or MRI was carried out and several main arteries in her chest were found to be inflamed.

[Craftnut68 in reply to PMRpro]

Hi PMRpro I had a head MRI scan and was told I had had a small stroke caused by blocked artery and stroke clinic doc organised the TAB and got me started on prednisolone. I do suffer with chest infections and I phoned surgery to say I thought I had one as I was wheezing and coughing and a prescription for antibiotics was left at reception for me . No appointment therefore no sounding of chest.! I have however this week (2 weeks later) coughed up some phlegm

[PMRpro Ambassador in reply to Craftnut68]

I'm not sure an ordinary MRI would show inflammation, it needs PET, positron emission tomography.

And now you have phlegm - how about asking the GP to send a sample for culture?

[Craftnut68 in reply to PMRpro]

I have only had a little phlegm this past two days. I phoned Gp on tues last week to say I had finished antibiotics and not feeling greatly better . He arranged a chest X-ray for me the following day not had results of this and he did say that he would have liked to have a phlegm sample to culture but at that point I wasn't bringing up any I only got some up sat and sun and none today as cough as receded a good bit

[Hidden]

Craftnut68,

You can continue to conjecture and not get straight answers or proper treatment from your GP or you can request a referral to an appropriately experienced Consultant with experience in Vasculitis to help make some sense of your complex situation.

My GP referred me all over the UK ( I stay in Scotland ) so it's possible to be seen out of area. I know the name of a good Rheumy in Glasgow who runs the Vadculitis clinic there. What do you have to lose?

I don't mean to sound harsh but after nearly 4 yrs of mismanagement, leading me to be dismissed from my job on health grounds recently, I recently have started new treatment which has made a massive difference to my symptoms. I am only in this situation because I kept on pushing.

[Rose54]

HI

I do agree with others take no chances .

However I have suffered with sinus pain in my teeth for many years on and off .

This is normally only fleeting pain and only during the day

Lying down at night never had any problems mentioned this to a friend who is also on Preds and she too has the same problem .

On looking on line their is evidence that a lot of people on Preds suffer from pain in jaw or their teeth.

If it got to the point I had to take painkillers I would go straight to A and E

No point in seeing my GP as he blames my high blood pressure, high sugar levels, and everything else I have on the preds but at least he's not telling me to reduce just gives me scripts and tells me to carry on as I am .

Hope all goes well for you

Rose

[Judigardener]

Someone on here has recommended a good rheumy in Surrey, Maybe worth a referral and a trip to see him?

[Caro12line]

Hi Craftnut68. I am the lady PMRPro refered to in her reply. I initially presented with head pains, jaw and scalp. My Biopsy was "a clear negative" and I was told I didn't have GCA. Symptoms persisted and I insisted thei vestigate further. My Rhuemy did a colour ultrasound armpits, under my arms to elbow and across my chest and neck. He saw "something" and sent me for a PETCT scan where it showed inflammation of Aorta Arch and Subvlavian arteries so GCA was diagnosed. Started off on high dose Pred 60mg. So my advice is to ask (insist) further tests are carried out. Good luck. X

[Craftnut68 in reply to Caro12line]

Thanks caro12line I have never been referred to a Rheumy but I've been in severe pain since early hours of morning with same pain I was told in 2009 was costochondritis .i couldn't get Gp today but will try again tomorrow I neede to have other investigations done to try and resolve this. Due to having lost peripheral vision in both eyes I epwas started on 60mg pred for 4 was then reduced by 5mg every 4th day down to 10mg which I have been on for 6 wks. I never had head pains but have had jaw pains on and off for several years which I was told was temporal mandibular syndrome so have had similar pains for a long time

[Caro12line in reply to Craftnut68]

That is a quick taper! I started at 60mg and 15 months on I am down to 7mg and that is "reasonably" quick. If it were me I would get further tests even if it is just to rule out GCA. Hope all goes well and they find a diagnosis and get the right meds for your pain. X

[Polywotsit PMRGCAuk team member]

You have tapered ever so quickly! I don't have much to add to what has already been written except to point out that the jaw pain with GCA occurs generally when you are eating - a sign that enough oxygenated blood is getting through. Given your history it might be worth downloading the BSR guidelines on GCA from the PMRGCAuk website, to discuss with the rheumy if necessary.

pmrgca.co.uk/resources

[Craftnut68 in reply to Polywotsit]

Thanks KateGilbert my symptoms seem to be so weird and different to the norm. I also get pain right along bottom jaw bone and excruciating pain right at bottom left hand side which o was told was TMJ also phantom tooth pain as jaw was scanned and showed nothing untoward so upshot was take pain killers 

[Solstice85 in reply to Craftnut68]

BINGO! I was in a TMJ study at the university of Chicago, sort of brutal. Because the nerves are all very close in proximity,it just affects everything shoulders up it seems. Insist, yes insist,they look at everything possible. But, even though they don’t believe GCA is positive, you need a rheumatologist that knows what they are doing,not a GP. BLESS YOU!

[Sheilamac]

How are you doing now Craftnut? I see we live near each other. I am in Craigrothie but moving to Tayport soon. I thought the care I got wasn't good but yours is much worse. I do hope you have seen a GP or rheumatologist who understands GCA by now. 

By the way, there is a lovely Support Group in Dundee, if that is practical for you.

Sheila

[Craftnut68]

Hi Sheila thanks for your reply. The short answer is no I have never been referred to a rheumatologist and only actually SEEN my GP twice since wee stroke in November all other communication is over the phone that's how our health centre works,you can't make an appointment at all .   GP ensures I get esr bloods done every month. Due to reading posts I realise that 60mg I was started on was tapered far too quickly. Whilst on these tapers readings came down from 78 to 16 but then went up to 47and then down to 35, 31 and 3 weeks ago it was 29. I think GP should have increased pred levels for a bit due to pain down my spine and round my rib cage. I spoke to a nurse in health centre this morning as I had to monitor my bp twice a day for a week as it was running a bit high and I told her my concerns re pains and would it be possible for her to get my GP to phone me today. She looked computer today and said all his "telephone slots" we're spoken for however she will arrange for him to phone me tomorrow. Sheila I live in Livingston so unfortunately it's not really practical to get to Dundee

[Solstice85]

That is a related condition to PMR/GCA. so, if that is related (temporal mandibular joint dysfunction) is as well (my assessment only). TMJ is very painful and they had me on Vicodin, Valium and other lovely drugs that would melt your stomach. When I flare, my jaw gets real tight and hurts so bad. I hope you can get some relief, heat and cold (alternating) somewhat. GCA is difficult to diagnose, so my neurologist said they pretty much walk hand in hand, and not to disregard.

I hope you get some relief.