Why do doctors keep refering to 'temporal' arteritis instead of using the term 'giant cell' arteritis?

I read that giant cells can inflame any artery, causing lesions, blockages and damage to vital organs which can result in disability or death. This title is a misnomer and should be challenged! My very ignorant GP said I need only be concerned about having GCA headaches. When I said I had heart pain and palpitations, she diagnosed 'indigestion' and described the pain down the backs of my legs (my femoral arteries) as a trapped nerve! The expression 'temporal arteritis' is very misleading for patients and doctors. There should be some consistency of nomenclature if there is to be an end to patients being intentionally blindfolded by their doctors!

[GreyOwl]

I have similar responses from my GP when I see him about similar symptoms. It's reached the stage where I wonder if he knows what he's doing or if I've become a hypochondriac.

[Celtic PMRGCAuk volunteer]

Wendy, GCA affects arteries throughout the body whereas TA is confined to the temporal arteries, hence the different names.

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Hi Celtic, the two terms are being used interchangeably even by specialists - as though they mean the same thing! This is exactly my point! Anyone with TA (giant cells in the temporal artery) has GCA (giant cell arteritis) so why not use exclusively GCA as terminology? If TA is used by practitiners, my GP's for instance, were convinced that headaches were serious and my heart pain and palpitations were dismissed as indigestion and the pain in my femoral arteries was dismissed as a trapped nerve. It is just such incompetence that they were misled by the terminology of Temporal Arteritis rather than the understanding that giant cells can attack any artery of the body, so hence the importance of the term 'GCA' as opposed to TA.

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I don't know if this will be helpful but the majority of patients with GCA have temporal arteritis. GCA affects large vessels, if you search under Chapel Hill Consensus Conference it describes how the different types of Vasculitis are categorised.

From reading I have done it would appear that there is more of a crossover between GCA and Takayasu's arteritis ( the other large vessel vasculitis ) than was previously thought. It would be fairly unusual, but not impossible, to have GCA in the aorta and femoral artery's and have no above neck involvement.

I wonder if blaming the terms used is just semantics when it is better awareness amongst the medical profession which is needed. Wegeners Granulomatosis ( another vasculitis ) was recently renamed Granulomatosis with polyangiitis which is histologically more correct, I am not sure that this has led to better diagnosis or understanding in primary care.

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I think it might be a very grey area but when expertise is so extremely limited, any confusion in terms will only add to the nightmare of diagnosis and treatment. Giant cells will be found in inflammation of the temporal artery but if headaches indicate temporal arteritis, it would be a serious mistake to assume that giant cells are not in other arteries. My GP said I need only be concerned about having GCA headaches (however, I have heard of people going blind without ever having a headache.) When I said I had heart pain and palpitations, she was convinced it must be 'indigestion' (because she did not realise temporal arteritis could affect other arteries) and described the pain down the backs of my legs (my femoral arteries) as a trapped nerve! The term 'temporal arteritis' leads one to believe that the problem is only in the temples and not throughout the body.

[Runrig01]

Hi Wendy, the reason your GP has suggested nerve pains in your legs is because the sciatic nerve runs down the back of your leg. The femoral artery is located in the inner thigh area, if you had vasculitis affecting your femoral artery you would be more likely to get claudictation in your legs, which is cramping usually brought on by exercise, like walking for a period of time. Vasculitis of the aorta generally does not produce symptoms but X-rays will detect an aortic aneurism, all GCA patients should have X-rays every 1-2 years. Hope this reassures you. Regards Runrig x

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Thank you runrig, I was not concerned about a trapped nerve because this was just one of the many diagnoses that my GP came up with if I described a symptom, such as pain in my seat and the backs of my thighs, unable to walk up or down a street curb, etc. (she was very creative). Heart pain is described here as an 'uncommon' symptom: webmd.com/arthritis/tc/poly...

but I have had a pounding heart whilst even lying in bed. A recent ultra sound scan of my right arm suggested I migh have damage to this artery. My point is about the terminology 'TA' and 'GCA'. The condition is not isolated to the cranial artery.

[polkadotcom]

I have palpitations simply because I am lying in bed and have done for however many years (40+?) that I can remember. Not every night but more often than not and for no good reason that anyone can find.

There is a point which some doctors have about aortic aneurism in that it does no good if patients are aware they have them. It's too risky to try a repair, so if you have you will spend the rest of your time wondering 'Is this it?' which I wouldn't say was conducive to a good quality of life.

Wendy, the change from referring to GCA instead of TA is already taking place to a certain extent. I haven't had to explain the difference between the terminologies for some time.

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I've never known so much confusion in any aspect of my life as I have over the past 9 months due to medics who seemed to enjoy obfuscation which was unnecessary in many instances. As I had PMR (hips and right arm) with typical headaches and jaw-ache of inflammation, GCA should have been suspected, and if so, giant cells elsewhere might have also been considered. As TA also involves giant cells so why not call inflammation of the cranial artery, GCA? Some TA might be exclusive, with no inflammation in any other artery, but if this has not been proved, doctors should not presume. I did lose some of my eye-sight because my GP didn't bother to listen to my symptoms or look at my blood results before reducing the dosage. Recently I had an ultrasound scan under my right arm, "I think you might have some damage to the artery here!" I was told, without further explanation. My reply was that I that was a minor problem (frozen shoulder type pain on low dose steroid) compared to the pain in both hips on low dose. I was offered a PET scan but I am thinking that no-one knows what they are doing and can't even agree on what the illness is called! It's not even listed here: nlm.nih.gov/medlineplus/enc...

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PS I think that the cause of your palpitations Polkadot might not be the same as mine, so one should not assume they are. If a person has high blood pressure, high cholesterol, palpitations - and GCA, some investigation might be in order to prevent a more serious situation. Heart attack and stroke can take place with GCA. My sight loss was described ny the hospital Opthalmologist as "in GCA (he used the term GCA not TA) blood vessels at the base of the back of the head can get sticky and blocked and cause the type of sight loss you experienced".So my GCA was not limited to my temporal artery but included other blood vessels that appear to have become blocked and caused deteriotation of my eyesight.

[Runrig01]

Hi Wendy, I presume despite the confusion over terminology of diagnosis you are being treated with high dose Pred due to your sight loss. I sympathise with you I have many GCA symptoms including burning temples; jaw cramping; tongue pain; head pains with tenderness in thee area of pain; cramp in right arm; tinnitus; vertigo - the list goes on but I am 48 with normal bloods so the specialists say No! I remain optimistic that one day we will get to the bottom of this. I refuse to come off Pred and risk losing my sight till someone can explain why I get so many GCA symptoms. Regards Runrig x

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Oh! gosh! runrig01 that is so very concerning. I had stiff hips and right arm weakness for years but did not mention it to GP, then a stiff upper jaw on right for a few months, then temple headache on left, pain in left jaw and tip of head so rushed to GP that day in terror. I was put on 15mg (and I took asprin as per the website) which solved the problem for a week or two, great result. However, when my own body stopped producing its own equivalent of steroid and my GP took me off asprin in favour of another pain killer, and also rapidly reduced the steroid by 2.5mg every 2 weeks (despite my ESR's being raised) that's when the sight deterioration occurred. I used to get woken at night with sweats, hip discomfort, headaches, in floods of tears and panic attacks. My GP went ballistic when I took a higher dose than she prescribed. When I got down to 5mg, I had tinnitus in one ear and ear-ache in the other, dreadful headaches and was unable to stand up from a seated position. I have been suicidal feeling trapped in a very dark place and am terrified out of my wits to be dependent on doctors who express no interest, knowledge or integrity. I feel for you, especially as you are so young and deserve investigations which doctors are unwilling to spend money on as they have a business to run. These days doctors look for 'evidence' on paper but with this illness, it seems to me, there are far too many unnecessary ambiguities and inconsistancies and if the doctors are unclear about the whole sehbang, what chance have unmedically qualified patients who are seeking some understanding that would lead to some level of recovery. Perhaps if I were you, I would visit an Opthalmologist and ask some questions, such as 'are there warning signs before blindness occurs?' 'can blindness be reversed if high dose steroid is given quick enough?' 'can predisposition to blindness be detected by blood or other tests?' etc. I do know a 67 yr old man who had no headaches, but had a recoverable blindness episode in one eye due to GCA (temporal artery biopsy negative). Sending good wishes that your symptoms recede and that you can finally come off prednisone. rheumatology.org.uk/include...

rcplondon.ac.uk/sites/defau...