GCA symptoms - continuous or on/off?

[Purpletop]

Hi, I'm still trying to get to the bottom of my symptoms via-a-vis GCA. For the past few days Ive been having pain in my left temple, in my left jaw, under my left ear and last night pain on my forehead (the latter accompanied by some sensitivity to touch and slight vertical swelling above my left eyebrow).

I could rationalise the temple, jaw and ear pain by attributing it to silent migraine but the swelling on my forehead and the sensitivity to touch are not usually in that ballpark.

So of course I panicked and I went to A&E - pain at the time of arrival was 7 out of 10. 4.5 hours later (ridiculous, huh) I got to see a doctor who asked me to put my hand through my hair and asked me whether I was in pain as a result. I wasn't and have never had that symptom. But I did mention the forehead sensitivity/pain and the visible swelling but he was having none of it. He said that to be temporal arteritis it has to be across the temple, not forehead. Plus the ear/jaw/temple pain had diminished to a bearable 3 out of 10 by then. So he concluded that it wasn't GCA and sent me home.

Needless to say I'm absolutely fuming at having wasted my night only to be patronised and treated like an overanxious old (but not old enough for GCA, apparently, I'm 49) lady.

I have two questions:

a. when you have GCA symptoms, do you have them continuously at the same intensity? Or can they be varying in their intensity throughout the day?

b. did your GCA come on acutely, or they've built up over time? This guy seemed convinced that it is only an acute form. Hm, I'm not convinced.

Many thanks for your help.

[Celtic PMRGCAuk volunteer]

Purpletop, you're probably(hopefully!) by now catching up on some well needed sleep.

The very first, and rather weird, symptom I had before the classic ones arrived was suddenly being unable to eat or speak easily without biting the inside of my cheeks. On checking with my dentist at the time, he commented on the resultant sore places he could see inside my cheeks but couldn't find any reason.

Then within the following week or two, the almost unbearable head pain arrived suddenly, not just in the temple area but all over, almost immediately joined by blurry vision, nausea, vomiting and jaw pain. It's important to add that the jaw pain with GCA is not a continuous pain but a jarring pain on chewing.

I didn't suffer ear pain although this can be a symptom of GCA.

In answer to your first question, the pain I experienced was both intense and continuous.

To answer your second question, my symptoms did arrive quite suddenly rather than building up over time.

If you jaw pain is continuous and not just occurring on chewing, then that is unlikely to be a symptom of GCA.

Can you feel a pulse in your temple area? Have the veins there become more prominent

If you are someone who has experienced raised markers of inflammation with PMR, then I assume that the A&E doctor carried out both ESR and CRP checks - they are almost always raised in GCA, especially the CRP.

I'm also assuming the doctor checked the back of your eyes? If not, perhaps you could ask a good optician, better still, an ophthalmologist to check for any signs of GCA.

I do hope this helps.

[Purpletop in reply to Celtic]

This helps immensely, thank you. My jaw pain comes and goes but allows me to eat/chew without difficulty at this point in time. My eyes have been checked thoroughly by 3 separate ophthalmologists and no vasculitis was found. My ESR/CRP are within normal range but then I have lupus and these are broadly within range even when lupus is active - but the A&E Doctor this morning said that regardless, the ESR in GCA would definitely be spiked considerably.

As for the temple arteries - I do feel a pulse. But I do have this swollen 2 cm line above my left eyebrow. the A&E doctor said that's not due to GCA.

I'm hoping none is. Having lupus is bad enough, I don't know how I'd find the strength to deal with GCA. Our immune system is a formidably destructive apparatus - it isn't easy trying to fight it when it has decided to attack its own.

You don't say how you're coping with your own fight against GCA - hopefully that's all under control by now.

[PMRpro Ambassador in reply to Purpletop]

Well he's wrong on at least one count - 1 in 5 patients with GCA still have ESR/CRP within normal range.

However, if there is a pulse it is less likely to be GCA (never say never though). If there is no sign of disturbance in the blood supply to the optic nerve it is also good news as is the fact you can chew OK.

As for your questions - GCA can be acute or build up over time, just the same as PMr. And yes, the symptoms can vary from hour to hour and day to day.

Try to relax - because tension can cause all these signs too. I suspect there may well be a link to the lupus too.

[Old_Bedfordian in reply to PMRpro]

Just to confirm your point that although my symptoms were diagnosed as GCA (now awaiting biopsy), my ESR was normal, and usually is. (Rheumatoid factor being positive consistantly).

Stress makes the pain worse, and relaxing therapy eases it. Variation approx 60% of my max experienced when stressed to 20% of the max when meditation type therapy applied. Hard to do, but so effective!

[Angela123]

Hi there. I can totally understand your frustration, panic and fear. I went through this same scenario last year during the days between Christmas and New Year when it wasn't possible to get hold of my rheumatologist. I too sat in abject terror in A&E, having spent a sleepless night unable to rest my head on a pillow for the pain. They sent me home after a couple of Ibuprofen and something to eat and drink after which my blood pressure reduced and I started to feel better, and the headache reduced to a dull ache. A couple of days later I went to my GP, still worried, and he increased my Pred from 15 to 60 mgs just in case, much to the disappointment of my rheumatologist who diagnosed migraine caused by arthritis in my neck. Now we are back to the same time of year I'm feeling nervous again, but the headaches I get are nothing like those described by

PMRPro, and getting worried or stressed out doesn't help me. I still think it's best to take no chances though if you feel there might be something wrong. Let's hope the remainder of 2014 is uneventful in this respect for both of us. Angela

[Purpletop in reply to Angela123]

This is very interesting, Angela. I too had similar episode last year about the same time. The main feature then was severe headache on the left side but vision was not impacted at that time. It took me roughly 3 months before I got to feel normal again and the symptoms disappeared on their own accord. I did think whether there is something weather related, I don't know.

I think my own terror comes from the lack of trust I have in the medical profession. Not because they haven't been helpful. But because ive realised that their knowledge is severely limited to the patients they see. If they see no patients with similar symptoms as ours, then they rely on their own reading of medical materials to which they apply a layer of statistics - I.e. What is the likelihood that out of x number of people in this area, this patient happens to have this diagnosis.

GCA is classed as a medical emergency, which is why I went to the A&E, thinking they are best equipped to recognise it. The drawback is that if there are less acute symptoms, they wouldn't be the ones seeing them but a gp would. I'm impressed by your GP who agreed to place you on steroids just in case. Mine just looked blankly at me and said to rely on my ophthalmologist and rheumatologist instead. And when my rheumatologist and ophthalmologist both say that GCA is not present, I should be re-assured but I can't.

Like you, I will have to make a conscious effort to stop worrying until severe symptoms do develop. At least now I know what 'severe' means in the context of GCA.

[Old_Bedfordian]

Hi Purple Top, love the name. Here we are with similar problems it seems. Let me explain. Briefly, my temporal pain began suddenly with an acute pain lasting a cople of hours at 2am one night. It was similar in level to a fracture of the bone. I was in a deep sleep at the time, but I was aware of this happening and as I becmae conscious realised how horrendous it was. I call the level of pain experienced 100% having never had that before without a fracture. It took two hours before the pain reduced to about 40%. By the time I saw a GP later that day it was around 20%. I went on Pred at 40mg per day for 5 days, then stopped. A few days later the pain was returning. I went to A and E and the registrar insisted I go back on pred, and see a rheumy.

After that I have had pain regularly to a level of 40% or less. Always centred on the temple, but do get it around the area. Swelling of the blood vessels is noticeable most times.

The most important sympotm was the week before the acute pain came. I could not brush my hair, which is long and full, for several days, without tenderness of the scalp shouting stop, that hurts.!!!! Also over the years I also had claudication of the jaw when talking, which stopped when I stopped talking. But no more. That was up to a year or so before.

My vision is still good. I test it regularly.

I could give more detail, but that is where I am . No medication, and being wary of the pain. I take and never have taken any painkillers. Knowing what I do, I believe they can prevent us from being as aware as we need to be. Steroids are my last resort, even after some loss of sight. That is a personal choice.

If you have any questions please ask away.

BTW, I have suffered with suspected PMR over the last decade or so. Firstly being diagnosed wrongly as rheumatoid, and fortunately taking no prescribed meds. Well meaning Gp's can do more harm than good sometimes, in my view....ooops what have I said.

Q. Any vasculitis symptoms? Visible signs on the skin anywhere?

Any neck Pain? The occupital nerve exiting from the neck splits into several branches and spreads across the scalp. This nerve trunk, when pinched, can cause similar pains across the scalp and cranium.

[Purpletop in reply to Old_Bedfordian]

Thank you for responding! My symptoms went away of their own accord. I still don't know what caused them. Recently I've been seeing a neurologist for something else and I mentioned the threshold set by the a&e guy - the neuro confirmed that those are not the only symptoms as there are other vessels that can be affected too. Anyway, he did ANCA testing as he was drawing blood anyway and that came back negative. How conclusive that is, I don't know. I have some minor signs of vasculitis as a result of the lupus, I'm told - mainly splinter bleeds under the fingernails. I'm always thinking of vasculitis, it scares me. In fact lupus scares me too. Autoimmunity is unbelievable, our own immune system shows its true mettle, huh?

I'm on mycophenolate mofetil and Plaquenil, the former also used for vasculitis, so I'm hoping to be keeping it in check to some extent, if it is that.

Well done for staying off steroids - when I panic with the symptoms escalating for some reason I find my resolve never to use them again, weakening. They're fantastic at stopping inflammation but the damage they do!

Fingers crossed our symptoms stay quiet from now on!

[Old_Bedfordian in reply to Purpletop]

Agreed, on your comment on our sympotms, but just to say I have experienced what may be cutaneous vasculitis, and sympotms of lupus. Positive RF factor and normal Anti-ccp blood results, indicate my diagnosis towards lupus as well. However, I prefer the PMR approach, that seems far less hazardous out of the three! Can we choose?

I wonder how your lupus was evaluated. I am interested, as I have never met anyone actually diagnosed with that particular auto-immune disease.

It is frightening that so little is known about so much by so few......