Thought i would introduce myself.. I have had psoaritic arthritis for over 20 years now. Pain levels been up and down since then and now on cosentyx which i feel has really helped. In particular for my psoarisis. However more recently I have had recurring shoulder, arm and hand pain. I had this a couple years back but it has returned. Also had very mild slight tingly feeling at right temple and dullness from right temple , across skull to back of skull. Full feeling in ears too. Plus a weird feeling in my right eye of grit or dust in it and needing to feel i need to open my eye up wide. I have TMJ which may account for some of those symtoms and ofcourse the PA too. I visited the GP cause i was concerned about the mild head pain and we discussed GCA so she has ordered various blood tests and she also did a checklist of it and noted i was low scoring. To my surrpise she also emailed rheumy and my new consultant called me and noted simlar to the GP with the scoring and also noting I might me too young for it ! However i have read on this a few people of my age and younger have been diagnosed. I am 58. Consultant wants to meet with me next week to look me over so thats good and advised me that any issues with my eyes and visions i contact the GP or them straight away. I havent had any vision issues. But again I note from other that this doesnt necesarily mean I havent got GCA. The pain at night is so bad I now need to take co codomal , naproxen and amtythritiline. Other than this im feeling hunky dory !!!
Any thoughts on the above would be greatly appreciated.
Thanks
Jim
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Scottishguy66
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I was diagnosed at 54 on the strength of a good response to 60mg Prednisolone and symptom history. My bloods were within normal laboratory limits though not normal for me which wasn’t of interest to the docs. My biopsy 8 days later was negative and a PET scan 3 weeks later was also negative. The latter was deemed a waste of time because of the 3 weeks of steroids.
Guidelines say over 50 years of age with the highest incidence in ages 70-79. Here is one guideline:
Not too young for sure… and well done GP for contacting Rheumy, suspected GCA should be treated as an emergency.
Lots of symptoms are very GCAish, scalp, temples, ears , shoulders, upper arms [although not necessarily hands]- and although you say you don’t have eye issues, actually you describe exactly what I had -feeling of grit in eye. Please do take notice of that…
How long have you had that, and has it got any worse, and is the Rheumy aware? If it does worsen then prompt action is required.
Thanks for the reply. I have had the eye issues for a long time. In fact cant remember when it began. However i had eye test in May ( check up) and had a clean bill of health and i wasnt to go back for another 2 years. I will remember to highlight it when i speak with my consultant on Thursday. I forgot to mention she said it wouldnt be her decision whether i got a scan but it would be the scan peoples decision based on my scoring from the questions she asks. I did say i would rather just have a scan just to make sure but i understand its early stages maybe but one cant be too careful ? I have already had two cataracts removed from my eyes.
I was diagnosed with GCA in February of 2023. Looking back I had a horrific headache over new years 2022 that I could not get rid of despite trying every over the counter medicine I could purchase. I generally do not get headaches and attributed it to a sinus infection as at the same time I went through a box a Kleenex a day just blowing my nose. Had I know it could have been something like GCA I would have gone to the emergency room I knew nothing about GCA
In late January my ears started having issues, got checked by an ear nose and throat specialist and received a clean bill of health and was advised to see an oral surgeon or a neurologist if they pain continued. A week after that visit while driving all of the sudden my eye sight in my right eye was crazy. Imagine looking at an 8 digit car license plate, I could only see the two middle letters or digits. I thought it was something with my contact lenses, after ruling that out knew something was terribly wrong.
I got the run around trying to get an appointment with the neurologist and immediately called my eye doctor. They did all sorts of tests and took photos of my eye and behind it. At the end he said "I don't think you have this because you are too young and you are not manifesting all of the sysmptoms, but we are going to rule it (GCA) out".
I had a C-reactive protein test and a sedimentation rate, both blood test and the results were sky high beyond normal. The following day my phone rang off the hook, my general practitioner and eye doctor, "you have GCA and need to be on prednisone yesterday"! I was started on 60mg daily, my eye sight corrected itself with the day.
I continue with the blood test and have now been tapered down to 20mg of prednisone. I absolutely hate being on the prednisone, I gained 21 pounds in as many days and have now gained a total of 28lbs and have gained an oh so lovely (NOT) moon face. I keep telling myself I'm alive, I haven't had a stroke and I can see.
My take away from my experience is that you have to adamantly be your own advocate because GCA can lead to a stroke or blindness and obviously in my care there was no such thing as being too young.
Hi thanks for the reply . What age are you ? I’ve still got sore temple area so took bull by horns today and contacted opticians and I am currently waiting to see them . I still have consultant appointment on Thursday too . Hopefully optician will be able to give some advice about it . Still not heard back from Gp so unsure if my bloods were ok or not . Thanks Jim
About 40 is a typical age to develop psoriatic arthritis. It's an autoimmune disorder and, once you have one, you're at increased risk of developing another. The average age for developing GCA is about 75, but late 50s is not rare.
You mention "recurring shoulder, arm and hand pain". Which side is this on? Is it both? Does the pain seem to come from the joints, or from the muscles surrounding the joints?
ALL the guidelines these days say "over 50" - but there is a report in a Welsh newspaper about a 37 year old who died of a stroke - caused by undiagnosed GCA, The final diagnosis was certain - made by the pathologist at the post mortem. The are always right - just too late!
update . Got all clear at Opticians and also bloods were fine too . Still got rheummy face to face appointment tomorrow to discuss the issues plus ongoing night pain
met the rheumy and she did a scan of both temples . Ruled out GCA however did note very slight hardening of artery on right side ( but
“ nothing to worry about “ ) easier said than done so all fine at present time . She feels my body pain would be helped by specific exercises as she noted i have low muscle tone . Recommended I source an instructor to help me . So bloods fine , eyes checked and temples nearly ok .
Like the biopsy - the scan being negative DOES NOT MEAN IT DEFINITELY ISN'T GCA. It may not be affecting the temporal artery - but might be in other arteries elsewhere in the body. It probably isn't GCA - but if you have any visual symptoms or jaw pain when eating later, don't discount them!
That's as maybe - but her interest may be in RA. She has shown a lack of knowledge in terms of age and diagnosis for GCA and it is something we come across a lot.
She might be fully trained, but she shouldn’t assume just because the temporal artery is clear, it’s not GCA. Not every artery is affected, the giant cells are randomly dispersed. My temporal artery was never affected, but the ophthalmic one most certainly was, and that’s the artery that causes the sight problems. Unfortunately I know that..
I’ve had no sight issues , no headaches ( well very slight ) blood tests fine , eye tests fine . So what else would need to be wrong for a diagnosis of GCA
That alone would have suggested it was unlikely to be GCA - though you never know and some people don't have any symptoms until the sight loss.
I think our concern has been she has demonstrated a lack of knowledge on two fairly important criteria - in our experience at least!!! You can have it much younger than you are and the temporal artery isn't always affected.
Blepharitis is unpleasant but nothing like as bad as GCA - have you been given advice for dealing with it?
We aren’t saying you have GCA, but as your GP thought it a possibility, we are saying it most definitely needs to be ruled out.
I was just re-iterating that although the temporal artery is the one that is always mentioned, it’s not the one that actually cause the sight issues… and cannot be biopsied, unless it’s at a post mortem 😳
My GCA which took a long time to diagnose - was shoulder pains [initially], followed by fatigue, then later headaches, jaw claudication and then sight loss.
From versusarthritis site -which doesn’t actually mention raised inflammation markers -
People with GCA may have a number of symptoms. Most people will have some, but not all of these. The most common symptoms of GCA are:
headaches, often with severe pain and tenderness over the temples and the scalp – it may be painful to brush your hair or to shave. Headaches from GCA can cause pain elsewhere in the head too.
thickening or tenderness of the blood vessels at your temples
pain in the jaw or tongue when chewing
severe tiredness that affects your quality of life, otherwise known as fatigue
flu-like symptoms, such as a mild fever
sweats, during the day or night
weight loss
double vision
rarely, loss of sight, which can occur suddenly. This may be partial, but it can sometimes be total. It’s usually temporary in the early stages.
Thanks for that info . I literally haven’t got any of the symptoms apart from the temple pain as such . However i am grateful for now having the advice and support of you all and will monitor myself from now on . Just glad I’m aware of this awful condition . Regards
Good to watch when it’s top teams. Very often quicker than the mens…trouble is not enough investment for some nations, so some games can be a bit one-sided.
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