Giant Cell Arteritis anyone? Update on symptoms a... - LUPUS UK


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Giant Cell Arteritis anyone? Update on symptoms and new diagnosis

Horsewhisper profile image

Hi everyone

I posted a while back about a constant pulsating feeling in my upper jaw, choking episodes at night, difficulty swallowing food in the day and experiencing a sensation of fluid on the scalp. I received some very helpful replies from you guys and thought I’d post an update as some of you were interested in the outcome.

Because of my UCTD symptoms (fatigue, joint pain, muscle stiffness, lack of balance, dizziness, memory loss, headaches, low cognitive skills etc) as well as these head symptoms, at a routine dental check, the dentist referred me to Maxillofacial clinic at my local hospital. The consultant diagnosed me with Giant Cell Arteritis on my symptoms alone and said that as I am approaching 6 months on HQC, the inflammation in the arteries should reduce and the pulsating feeling along my jaw should start to abate. If it got worse very quickly, to go to A&E straight away and get steroids. I need to mention this at next Rheumy appointment which is in January and he may well start me on steroids anyway. The good thing is, that since being diagnosed with GCA, in the last week the choking/swallowing problem has gone! So perhaps I just need to wait for the HQC to really kick in and reduce the GCA symptoms...

I had never heard of GCA before and have now learnt that it is an autoimmune condition. I wondered if anyone else has GCA in addition to their Lupus/CTD/Autoimmune disease? I have done a bit of reading up on GCA and it seems to be closely linked with PMR. I know that there are a few PMR people on this forum and wondered if any of you have GCA aswell?

Any suggestions would be gratefully received with regards to how best to manage, what to expect, what to look out for etc.

Thank you xx

13 Replies

Slightly surprised that anyone feels that GCA would be managed adequately with hydroxychloroquine - steroids are the mainstay and there is no evidence that hydroxy reduces the pred required. But if the symptoms are fading - either it works or it wasn't GCA after all. However - I wouldn't wait until January, I would phone the rheumy asap and ask for advice, preferably an emergency appointment. If he agrees, the sooner you start on pred the better, I wouldn't trust the hydroxy alone.

If you want to know more about it - go to the PMRGCAUK forum.

Horsewhisper profile image
Horsewhisper in reply to PMRpro

Thank you PMRpro for your reassuring response - I will contact Rheum dept and get advice. Having read up about GCA there did seem to be some urgency re: treatment and this urgency was definitely lacking in my appointment with Maxfac consultant!

PMRpro profile image
PMRpro in reply to Horsewhisper

They probably haven't had that much experience. Mostly rheumies deal with it - get them onside.

I’m so sorry to hear that you have GCA. I don’t have it myself, but my dad does. He went completely blind in his right eye because of the inflammation in his temporal artery. It cut the blood supply to the optic nerve and his vision was gone. I’m in the USA. They treat GCA with a low dose prednisone and my dad stopped taking it. I don’t think he fully understood what it was. What is HQC? I hope the rheumatologist can give you answers as well. God Bless you!

PMRpro profile image
PMRpro in reply to okaykay

GCA should be treated with HIGH dose pred - at least 40mg and 60mg if there are visual symptoms. If your father was diagnosed with GCA and they didn't give him that sort of dose - seek legal advice.

okaykay profile image
okaykay in reply to PMRpro

They did but he didn’t understand the severity of GCA. It’s been a very unfortunate situation. He is diabetic type 2 and the steroids increase your blood sugar. It’s been all down hill since September of 2013. The rheumatologist said “I can lead a horse to water, but I can’t make them drink. So much truth in that statement. He was on 60mg of prednisone for a year and weened down to a lower dose over time. He takes it every day now, but such a hard lesson learned. @Horsewhisper my prayers are with you!

PMRpro profile image
PMRpro in reply to okaykay

Fair enough - but what a shame.

Horsewhisper profile image
Horsewhisper in reply to okaykay

Hi okaykay, thanks for replying to me. HCQ (sorry I got the letters the wrong way round!) is hydroxychloroquine. So sorry to hear about your Dad that must have been awful for him.

Hi, i had all the symptoms of GCA a few years ago, I woke up with the worst drenching sweat I've ever had, had to completely change the whole bed. A few hours later I woke up again as my head was so tender and painful lying on the pillow, even the shower touching my scalp was agony. Doc took bloods, next day I had a call from them as my esr was extremely high and I was referred to a rheumatologist urgently, they had to do a biopsy of the temperal artery as this is the gold standard to diagnose GCA. While I was waiting I was put on high dose of steriods. The biopsy turned out to be negative but they still had to treat me as it could have been a healthier bit of artery they took. Steriods for the next year. This was one of my many serious flares to be told years later they thought I have MCTD. I was told to take the steriods or go blind from the rheumatologist, it also makes it painful to chew food as it affects your jaw. I would have thought hydroxy takes too long to kick in and as GCA is a very serious condition that could make you go blind you need somthing like Prednisolone.

Thanks Lizard28 for sharing this, it has certainly helped with my understanding of the condition. I hope you are ok at the moment.

Hi there. I agree with Pro - if they are sure you have GCA then this is very serious and needs high dose of steroids. I was hospitalised when they thought I might have GCA 3 years ago as my ESR and CRP were through the roof. I was kept in on observation and they decided not GCA as it didn’t worsen but improved with IV pain relief.

It turned out that I had Sjögren’s rather than RA as previously diagnosed - and the pain you describe was diagnosed as myofascial pain. A Sjögren’s expert thought this was nonsense and told me to ask about Trigeminal Neuralgia. The problems in my face have been ongoing so I’ve been referred for testing for TN.

There are 2 types and it’s rare but type 2 is very rare and both would present in much same way as GCA as either side of your face has branches of the Trigeminal nerve running up it. I would query whether it might be this rather than GCA if not significantly worsening or affecting your vision.

Trigeminal Neuralgia type 1 is like a cluster migraine in your teeth and is excruciating but type 2 is more constant and an less extreme and even harder to diagnose but more common with Sjögren’s, Lupus or MS.

Horsewhisper profile image
Horsewhisper in reply to

Hi Twitchytoes, thanks for this useful information - I will definitely get this investigated further as by all accounts it seems a serious condition, although Maxfac consultant didn’t seem to apply any urgency to it. I will also explore the TN possibility too. I realise this is when the science becomes more of an art! Hope you are keeping well.

in reply to Horsewhisper

Your welcome. I’ve been grappling with exactly this facial pain stuff too for over 3 years now. I saw a Max Fax too shortly after being admitted to hospital for possible GCA.

There was a very helpful member here called Lynn Keyes who warned me that most Max Fax’s are just surgeon’s and usually have no concept/ understanding at all if autoimmunity or Vasculitis (GCA is one type).

I have to say she was correct as he was very patronising and discouraged me from having lip biopsy for Sjögren’s saying I had plentiful saliva so unlikely and anyway there are no systemic treatments. He also said my ESR would be much higher (it was 80-90 and my CRP was 150!) if I had GCA.

He was wrong about the Sjögren’s anyway as my lip biopsy was 100% positive and most are treated with Hydroxy so there is a treatment - just not one I can tolerate.

Afterwards my former great GP and 1st neurologist said TN and put me on steroids - which did help with the pain although not with the residual numbness.

I’m presently untreated and struggling badly with the organic dryness of Sjögren’s which is affecting every part. Also being out in cold weather or eating or drinking anything cold triggers the acute TN and the secondary type affects my whole face. I do have some very old root canals that are at the end of their life but oral medicine consultant (usually so much better than max fax if you can access one through dentist or rheum) says the Trigeminal nerve is probably the main cause of pain and leave the root canals well alone.

Hope this helps a bit.

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