3rd GCA episode in 18 months but Rheumi says it cannot be GCA, must be a migraine!

[Rancho]

Had pmr for 8 years and then 3 GCA episodes in last 18 months. Had a very average Rheumi until last year when I saw a brilliant one but she went on maternity leave and I got allocated to a new one who just told me it couldn't be gca as no one has it 3 times!

I know the symptoms and know my body. Each time the symptoms have been classic, scalp tenderness, jaw ache, headache and the worrying double vision. How a Rheumi can just deny the existence and implications of these symptoms is beyond me.

I live very near Chertsey, could someone please advise the details of the consultant with a high reputation please.

Currently on holiday in Caribbean and a new outbreak with worst double vision so far. Gone to 75mg as not likely to be local resources that can sort it and will go to eye doctors on return.

This disease is not taken seriously by so many professionals. I feel for some of the older people who cannot do research and it becomes too late for them.

[jinasc]

Rancho

Tell that Rheumy to read the BSR Guidelines on the Diagnosis and Treatment of GCA, s/he will read that it quite common to have a couple of flares in the first 18 months of being diagnosed and on treatment for GCA.

There is a Support Group in Chertsey and here are the contact details I assure you Shirley will be able to assist you, she had both GCA and PMR and is now her 3rd year of remission.

PMR&GCA UK Surrey support Goup

Contact Shirley on 01784 258064 or email

[e-mail] for further details

[Celtic PMRGCAuk volunteer]

Rancho, the symptoms you describe do come under the GCA umbrella. However, it is unusual for those with GCA and jaw claudication to complain of jaw "ache". The pain isn't usually an ache but a pain that occurs only when chewing. However, when suffering from PMR it is quite possible to succumb to GCA, particularly if you are reducing the steroids, especially at the lower doses, to a point where the PMR inflammation might no longer be completely under control.

As you say you live near Chertsey, I would be very interested to hear which rheumy you have been seeing. Sambucca has kindly given you my personal contact details and, of course, I will be happy to help in whichever way I can. I am sending you a personal message with the details of the excellent rheumy at Chertsey.

[PMRpro Ambassador in reply to Celtic]

Celtic - I had jaw claudication, it was an ache. Remember it depends on how badly the blood supply is affected and which particular arteries are involved. Mine also was there after singing or talking for a long time. The agreement is that I almost certainly have a large vessel vasculitis of some sort, probably GCA, but it didn't appear to affect the blood supply to the optic nerve - I only had very transient double vision and it resolved quite quickly on a daily dose of 15mg - as my rheumy said it would.

Can't have GCA 3 times? On what grounds one is forced to ask! Time for that doctor to do some reading methinks!

[Celtic PMRGCAuk volunteer in reply to PMRpro]

PMRpro, yes in my case the temporal arteries were involved (hence the oft used diagnosis temporal arteritis) and the blood supply obviously restricted to that area, hence the jaw pain on chewing and severe head pain, facial swelling and vision problems. It sounds as though you were lucky in getting away with it with 'just' a 15mg starting dose! But that you suffered jaw "ache" as opposed to the classic jaw "pain" on chewing is the old story isn't it, not just that our bodies can present a little differently with all illnesses and respond differently to the treatment, but also that more research is vital to determine exactly what is what with these two linked conditions.

As for the statement "it couldn't be gca as no one has it 3 times"! Just because that particular rheumy hasn't come up against this before doesn't mean that it doesn't happen as, no doubt, a few very unlucky people will agree!

[PMRpro Ambassador in reply to Celtic]

I suspect it may be the old confusion of "ache" and "pain" - an ache is a pain but a pain may not be an ache! Claudication is traditionally regarded as a cramping pain - another variation.

The 15mg wasn't a starting dose - I was down to 18mg on alternate days and the rheumy just raised the dose to 15mg every day. I did see something the other day where the opinion was expressed that very often a much lower dose will work acceptably to relieve the symptoms of GCA that isn't showing any indication of being anywhere near the optic nerve. And the chances are that most patients with PMR who take longer to get good results are actually suffering from (probably) GCA. But the catch is that no-one ever does the right imaging to show exactly where the inflammation is: in an ideal world all of us would get a whole-body PET/CT scan - and a lot of us would be lit up like Christmas trees I suspect!

[Celtic PMRGCAuk volunteer in reply to PMRpro]

"I suspect it may be the old confusion of "ache" and "pain" - an ache is a pain but a pain may not be an ache!"

And how people perceive whether their pain is actually an ache OR a pain, PMRpro! Similar to those who describe their PMR discomfort as stiffness and those who describe it as 'pain'!

[PMRpro Ambassador in reply to Celtic]

Exactly!!!!! Your rheumy was a hoot when we were elaborating on that! It is a very important part of diagnosing/monitoring PMR since the doctors didn't appear to realise that the perceptions are so very different. But there are a lot of patients who have both stiffness and pain - but the doctors struggled to understand the differentiation we were making.

[Hidden]

It's an interesting discussion Celtic and PMRpro. If you google

" Giant Cell Arteritis Misdiagnosed as Temporomandibular Disorder: A Case Report and Review of the Literature "

It reports on a really interesting case which mirrors my experience with jaw claudication and Runrig's I think. ( my Rheumy has now conceded that my ongoing jaw pain is probably claudication but possibly related to Behcets not GCA ).

Although I very definitely had " classic " jaw claudication I also had the symptoms described in the case report with bouts of pain that wouldn't settle even after I stopped chewing. The pain wasn't confined to my jaw either, mine was particularly bad when it settled in my nose, it felt like my face was going to explode. I know Runrig has had tongue pain which kept her awake many a night.

I think that there are many variation out there from the classic PMR/ GCA type symptoms where a few doses of pred bring a massive relief in symptoms to more difficult refractory cases who don't present in the normal way. It's all really interesting stuff!

[Celtic PMRGCAuk volunteer in reply to Hidden]

Keyes and Runrig, it's when I read experiences like your's where yet another condition with similar symptoms is thrown into the mix in Keyes' case, that I feel a little bit of sympathy for those who have to try to diagnose and treat us! So very frustrating for both of you.

[Hidden in reply to Celtic]

Thanks Celtic. Mine is proving a very difficult diagnosis which I " get ". What is upsetting is to have symptoms dismissed as " idiopathic " facial pain when they are classic symptoms of jaw claudication, whatever the cause!

[Runrig01]

Despite having the classic jaw claudication, with extreme pain on chewing, which stopped quickly when I stopped chewing, 2 Rheumys over 2 yrs have dismissed it. I agree my tongue pain is atypical as it is always there but is worse in the evenings and would spasm through the night keeping me awake. Admit to being more than a little anxious at seeing "the expert" on Tues, I now have 3 consultants who agree this is probable GCA, yet I expect him to dismiss the idea. Too many consultants refuse to think outside the box and accept the unusual. Meantime it's the patient that's left to suffer. I'm told it is like looking for a needle in a haystack after being on steroids 2yrs, and it worries me that due to being dismissed for 2 yrs, Rheumys are now reluctant to increase steroids to a therapeutic dose. If they believed me from the start I would probably have tapered down to the 8mg dose I am currently on. Frustrated 😗

[Hidden in reply to Runrig01]

Interesting Runrig, of course this is the expert that told me that I was too young at 47 to have GCA. That jaw claudication was like a heart attack in the jaw and my symptoms weren't severe enough ( 8lb weight loss and no sleep in 5 days due to pain ) and that I would have gone blind if it was GCA ( I was treated with high dose steroids straight away and not everyone with GCA suffers vision loss ).

I suspect your mind is much more open than his is!

[Runrig01 in reply to Hidden]

That's what worries me, and I know that despite 3 specialists agreeing probable GCA, my Rheumy will only consider "the experts" opinion. I'm expecting to have many trips to Leeds. Watch this space 😗

[Hidden in reply to Runrig01]

Let's hope he gives you a nice surprise! 😃

[PMRpro Ambassador in reply to Hidden]

I've had a few experiences where the letter to the GP (and me) bore no resemblance to the experience I had had at the appointment and I have really wondered if they had me mixed up with someone else (it has happened) - but to be present in front of a supposed expert who comes out with that sort of rubbish to your face makes me wonder what planet he is on and where he learnt his anatomy and physiology!

Claudication is NOT like a heart attack - in claudication the blood supply is reduced and is still adequate when the muscle is not exercising. In a heart attack the blood supply is stopped altogether for a time and leads to ischaemic tissue which dies completely if specific parameters are exceeded. Claudication is more like angina than an MI.

And if it is the blood supply to a nerve that is being interrupted the pain will be different to the pain if it is muscles that are affected.