Hi, has anyone experience of GCA which did not invole the temporal artery. I had what i though was a bad ear infection but could only get video doctor who perscribed antibotics. After one week or getting progressively worse I went to the out of hours doctor service. He confirmed I had no ear infection and suggested I go to A&E for fear of GCA. I have just spent two days in the hospital but have been released with a referal to ENT consutant. My CRP was 45 while not very high it was only 14 when originally diag PMR. The hospital is only small local and could only scan fermoral artery but not carotic. The pain in my ear, jaw and throat was at about 9 but has since decreased to about 5. My face and neck are very swollen and I can only take liquids. I am now on strong antiobotics (for horses i think!!) I am down to 8mg of pred. I am concerned that it may still be GCA but just not involving the terporal artery. Anyone else get this diagnose and what were your symptoms.
Non temporal GCA: Hi, has anyone experience of GCA... - PMRGCAuk
Non temporal GCA
Hi
My temporal artery was never affected ….but unfortunately the ophthalmic one was -
My symptoms over a long period - and a bit extreme -
“September 2010 started with innocuous bicep pains due to gardening, or so I thought. After a couple of weeks, no improvement, so off to GP, tested for PMR - ESR 30, deemed satisfactory, so discounted. Pains transferred to shoulders, left side more painful, so GP/Physio diagnosed frozen shoulder. Therapy followed, no improvement (now know why!) so 4 months on, cortisone injection recommended, slight improvement for about 2 weeks. Two more injections given, 4 months apart, still no relief, then increasing difficulty in turning over in bed, getting up in the morning, juggling OTC painkillers over 24 hrs plus extreme fatigue. By Christmas 2011 was in bits, managed to cook lunch, but superhuman effort required, can recall standing in front of oven tears streaming down my face thinking how am I going to lift this blinking turkey out the oven?
February 2012, pain had travelled from shoulders to head (with all the classic GCA signs- tender scalp, excruciating headaches, jaw claudication when eating) - trapped nerve emanating from said frozen shoulder diagnosed.
Early April, blurriness in bottom of right eye, GP appointment, despite my specific question no connection was made between all my symptoms! Within 48hours of GP appointment all sight gone – phone discussion with local optician/optometrist who suspected detached retina and recommended A&E.
I was seen by a very efficient young Ophthalmologist who diagnosed TA immediately and started me on 80mg of oral Pred.
Good news - I knew what it was. Bad news - what’s TA? and not sure if the other eye can be saved. Two incredibly stressful weeks at 80mg and relieved every morning when I woke and could still see, numerous blood tests and visits to Eye Clinic and most importantly confirmation left eye was safe my dose was reduced to 60mg. Then the usual tapering etc”
Think you need further investigation….not everyone has the “so called” common symptoms - doctors need to think outside the box.
Good luck with a definitive diagnosis and please keep us informed.
I have an appointment with by GP this morning to get a referral to ENT. After what You said I have booked an appointment also this morning with my opticians who have the equipment to check my optical blood vessels. My pain level is much reduced so I feel better able to state my concerns. I just could not communicate when it was off the charts. When the conversation kept starting “so you have fibromyalgia” I just wanted to cry.
Good - it can very very frustrating when no-one seems to listen to you. If your local optician is concerned hopefully he will suggest a referral to local eye hospital.
Let us know how things go please.
Is your optician part of the MECS system? There is also UES for emergencies:
This explains:
primaryeyecare.co.uk/servic...
I’m in Ireland not uk but I’ve just had my consultation with the optician and she’s happy there is nothing showing in the optical area. Off to my GP now.
Do you have a similar service? Suppose this may be similar:
upmc.ie/services/ophthalmology
though their claim "within a short drive of your home" seems a bit of a stretch!!!!
bmcgeriatr.biomedcentral.co...
academic.oup.com/rheumatolo...
The temporal artery may be involved - but the biopsy is reported a snegative. That does not mean it is not temporal arteritis since the lesions (patches of abnormal cells) are not evenly distributed along the blood vessels but form what are called skip lesions - it is not unusual for them to be missed because if this uneven distribution.
Dr Chetan Mukyhtar from the Norfol and Norwich hospital said very clearly in his webinar for the charity the other day that the name temporal arteritis is not only old-fashioned but it is misleading, It is used for the biopsy not because it is the most likely place to be affected but because it is an easily accessed, superficial blood vessel that can be excised without causing problems and if often affected. But by no means always ...
Yes I watch Dr mukyhtars webinar last week and tried correcting (politely) the various doctors that called it TA and explaining it’s the most common but not exclusive location. When I did get to see the rhumi he agreed with me but did not have the equipment required to test anything other than temporal. I’m home now and pain levels much reduced but worried it going to come back with a bang. It took me two years of banging my head off the wall to get PMR diagnosis originally. If very frustrating when you feel you are better informed (thanks to this forum) than the doctors
I had a biopsy but I did not agree with what Dr Chetan Mukyhtar had to say about there being no side effects. My sight on that side of my head was affected for a long time afterwards. It has made me strongly back scans and not biopsies.
I think he meant in terms of blood supply to the regions it usually supplies. The temporal artery doesn't supply blood to the eyes - but to muscles in the face which can result in changes to the jaw and chewing but the jaw is also supplied by other arteries and new vessels grow quite quickly.
PMRpro Not always excised without problems either … I’ve had pain and discomfort in my right temple and side of my head since my temporal biopsy in 2016. My rheumatologist said rare side effect. Asked my neuro what it likely was and he says nerve. If my comb hits my temple area I get pain and a sensation of a string being pulled inside my head several inches along the right side scalp. I hate it.
No - that depends on the skill and knowledge of the sugeon given the job. All too often a general surgeon who probably is pretty good at an appendix ... And damaging a nerve is always a risk. Mukyhtar said his TABs are done by a specialist eye surgeon - experience and practice are key. Sometimes it is vascular surgeons if you are lucky but I'd say max-fax would be the optimum choice. (maxillo-facial) I have some very strange pains in my knee after surgery for gluing a complex break back together! Can't kneel at all - or not without a VERY thick and soft cushion!
I can only comment that my mother had a place on her head at the top towards the back. At the time she had pmr and had a head ache she described as if someone was hitting her over her head with an axe. I remember seeing the unusual circle in her head. Doctors although put her steroids up had no idea what it could be. I went with her to her Dr's and 2 Dr's looked at it. Then she had an appointment at our hospital, Addenbrookes in Cambridge. Dr's kept coming into the cubical to look. Eventually she was told she had GCA . I know she did have jaw problems for which she was given a gel to rub on her jaw. I knew nothing of PMR and GCA then, although I since developed PMR myself. My mother was asked if she could have photos taken to use for teaching purposes. Years later while it was all being explained to me when I was diagnosed with PMR I told the Dr my fear of getting GCA and he explained what it was. He said that it was always on the temples. I explained about my mother but he insisted it could only be in the temples. I hope you get the right treatment.
The level of ignorance is astounding! No it ISN'T just in the temples and the most likely cranial area to be affected is the occipital region - the back of the head. But doctors tell patients "it's the wrong sort of headache"! I'm surprised there aren't MORE people losing their sight.
Yes it seems obvious knowing what I know now but all that time ago I had never heard of PMR or GCA. My mum had Vasculitis, it was on her death certificate but we had no idea. It was obviously in her legs but her legs were so swollen it couldn't be seen until the day we found her having just passed away peacefully in her chair at a nursing home. Her legs were then thin with dark marks like bruises on them. I have now discovered that having Sjogrens I am risk of Vasculitis myself.
You HAVE a vasculitis - there are all sorts and to be honest, PMR and GCA are preferable to many!
Yes I suppose I do but I don't think our type affect the legs does it? I have Sjogren's as well as PMR.
Can do - if it involves the abdominal arteries it can affect blood flow to the legs and the femoral artey can be involved too.
Oh dear. I don't think I am checked enough as it is!
Don't suppose any of us are - but if you have leg problems, worth querying.
I have had leg problems since 2015 but it's supposed to be half OA and half Inflammatory arthritis .
What sort of probs?
Swollen knees with fluid in them. I have it drawn off, well actually only one knee now as my consultant can't get any out if the other one and steroids in both knees. They seem weak, side effect from when I was on steroids.
“but he insisted it could only be in the temples”… good job he wasn’t my doctor otherwise I’d be totally blind, not just partially! Heaven help his future patients
This was about 20 years ago so I hope they have learnt more since then. In 2014 the Dr who told me you only get it in the temples obviously hadn't learned from my mum's photo's that were to be used in teaching. My own GP too when I was worried I might develop GCA, she told me you don't get it on top of the head .
Not sure some have - mine was 10 years ago, and still getting odd comments on here now…
My scalp is on the top of my head! The temporal arrtey is part of the scalp blood supply - more likely to cause symptoms there than visual symptoms, it is a different artery that supply the optic nerve. Did she attend her anatomy classes?
This was a man and more than 20 years ago, so he probably is no longer with us.
Just seen it was my GP, so 2014. The man Dr at hospital probably is no longer around. Hopefully my GP has learnt more. To start with she told me I would have PMR a year and it would go. I told her my mother had it a few years. More recently she told me it can last longer, she even said that consultants had changed their views about people staying on a low dose of Pred indefinetly
Blimey - things are looking up!!!!
PMRpro yes! My neurologist coauthored an article about a GCA patient whose presenting symptom was lesser occipital neuralgia, pain at the back of his head at the base of the skull. The article says: “Giant cell arteritis can affect any vessel in the scalp therefore initial symptoms are not confined to the temples or jaw.”
Never mind "not confined" - all too often aren't ever there!!
My headache was at the back of my head, either side of the channel between the muscles there. However my biopsy was of the temporal artery. Negative, but I was still diagnosed with GCA. My eyes were fine, but my ears were always sore and itchy inside and my glands on my neck were swollen and achy. Rheumy didn't seem to be bothered when I told him. I also had jaw claudication. 40mg pred relieved all symtpoms.
Thats very interesting. I had the jaw claudication and ear pain originally when I was diagnosed in May 2021. It went away with 15mg but mild ear pain remained until it rocketted off the scales this week. Pain is now down to about 20% but glands still swollen. I have a private "urgent" ENT appointment for 7th July, I would hate to hear what a non urgent one was going to be. If my symptoms flare again I intend to go to the private hospital ED. I am very lucky to have private medical insurance. My local hospital are wonderful in that I walked in Sunday morning and straight into a bed but they are very small and just do not have the facilities to do all nessesary tests.
Not what you're looking for?
You may also like...
Temporal Arteritis in 23 year old male
GCA/temporal arteritis - sharing experience
Newbie with suspected GCA
GCA?
soreness on right side of head GCA
Related Posts
Temporal Artery Location Difficulty Locating for Biopsy
Temporal Arteritis/GCA
Temporal biopsy listening to Bruce Springsteen
GCA confirmed after Ear pain
Has anyone had Occiptal Neuralgia that doctor thought might be GCA and treated it as such?Moderation team
