I’m Lesa, 43 yo female. In day 22 of having a frontal left sided headache, left sided scalp tenderness, tongue deviation, feel like going to choke if do not cut food in to very small pieces, blurred vision when reading and neck and shoulder pains. I’ve had a CT head, MRI head and neck, ultrasound of temporal arteries and lumbar puncture. All my blood work has been fine. I’m a gp practice manager so have medical professional colleagues, one has suggested my symptoms sound like GCA. Would be interesting to hear from others who have the diagnosis and also how you got the diagnosis?
?GCA diagnosis: I’m Lesa, 43 yo female. In day 2... - PMRGCAuk
?GCA diagnosis
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MollyBeagleBum
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GCA which is a vascular issue doesn’t like an unreasonable thought, but they need to rule out other causes such as neurological. However, I was treated with 60mg Prednisolone (steroids) within half an hour of entering A&E on the basis of my symptoms alone. The diagnosis was strengthened by my symptoms being resolved about 2 hours after taking it. My main ones on the day were scalp tenderness, stiff jaw muscle when I chewed for a minute (claudication), increasing tunnel vision, pain in the base of my skull. I was age 54 and the usual cut off for diagnosis is 50, though people do get it under 50 but not as commonly. Some doctors are quite rigid on this and one doctor I came across thought 54 was too young.
Later in the day I was sent for a CT. I had my eyes examined hours after my Pred and they were ok by then. My blood results were normal. They expect inflammatory marker (ESR & CRP) to be raised. Up to 20% people have normal markers so it shouldn’t be used as the sole basis of the diagnosis. 8 days later I had an artery biopsy which was negative. Again, false negatives happen enough that it is a useful piece of the puzzle and not the main basis of diagnosis. A positive really is a positive. The longer you are on Pred the more likely the result will be negative but guidelines say they shouldn’t withold steroids while you wait. 3 weeks later I had a PET scan to look for inflammation elsewhere but I had been on so much Pred by then it was a waste of time.
Frustratingly, without a clear positive on biopsy or specialist temporal artery ultrasound, or MRI diagnosis boils down to balance of probabilities and lack of signs of anything else.
This might be useful regards scans
radiopaedia.org/articles/gi...
Gosh what a rollercoaster for you! Sorry to hear you had such a tough time, Thanks for taking the time to reply.
I am 81 yr old female.In May last year I started with balance problems this included a fall due to vertigo.I could not walk without assistance some of it was anxiety.I had a MRI scan which thankfully came back NAD.I also developed claudication painful jaw.About a 3mnths following struggling I woke up and in the corner of my left eye was like I can only describe as a net curtain.Had it checked out with optician and was admitted with GNC.
Started straight away on prednisone 60mgs now on 10mgs daily.have bloods taken monthly as it’s still showing inflammation.Iam able to walk with a stick and no symptoms my sight has been saved apart from not as clear as I would like.
Can fully resonate with the net curtain analogy.. same as me except mine was over full eye and not saved.
As your sight is not as clear as you would like, is it the same as it has been since May or has it deteriorated… if the latter, have you been checked for cataracts?
I am under a consultant and my eye sight has not changed since September when I was in hospital. Yes .Your right there is signs of cataract also macro degenerative problems dry type slow.
Okay… thanks for reply. Hopefully cataracts can be sorted when they need to be…and fingers crossed the macular degeneration remains really slow…
Thankyou for your message. I feel I have a a good way to go.Sorry to hear your GP was slow in diagnosing yours. How are you doing .I have to say the optician was my life saver not my GP
If this was directed at me. I’m find thanks -been in remission for over 7 years -see here -
DorsetLadyPMRGCAuk volunteer
Does sound a bit GCA ish - or maybe Takayasu’s Arteritis [under 50 years of age] but with it being mainly one-sided , normal bloods, your age and a clear biopsy that might be difficult to convince some... not that it means it isn't.
You probably don't want to hear how I was diagnosed, so lets just say GP didn't recognise the symptoms nor join up the dots so I ended up in A&E having lost sight in one eye.
You do need more investigation.. so good luck with that.
Thanks for taking time to reply. That’s my fear, my eyesight is definitely getting a wee bit worse. I’m trying not to be pushy but struggling with it all!
Have you seen an optometrist for an eye check… that can identify some irregularities- and then they can refer to an ophthalmologist if they think necessary who obviously can do a much more detailed examination.
I was diagnosed in November and you need to be taking steroids as early as possible to save your eyesight. Even if only suspected GCA.
PMRproAmbassador
They do sound GCA-ish but they have obviously thought of that and your temporal artery biopsy was clear as well as having normal blood markers. Those factors together with your age all mean it isn't at the top of their list at present.
I haven’t had biopsy, had an ultrasound. I know a lot of GPs and one of them has advised she thinks it’s atypical GCA.
Sorry - brainburp, meant to write ultrasound!!!! She may think it is atypical GCA - but you will struggle to find a rheumy who will agree without ANY evidence.
I appreciate that and I’ve been a bit cheeky and sent Neurologist an email as an ex-colleague who is a radiographer had all the exact same symptoms as me and finally got a diagnosis via CT PET scan via a different health board.
If it is LVV (large vessel vasculitis) or PMR that is the most likely modality to show it. Trouble is, it is expensive and the waiting lists prioritise cancer patients - when we need it quickly too.
I’d hate to jump the queue and deprive someone in more need than I am. I’ll update if get any answers. Thank you for taking the time to reply.
Given the ultimate adverse effect of GCA, we too need to be prioritised. GCA can result in irreversible and total loss of sight or strokes - it isn't a nasty cold!
As for taking time to reply - it is what we do here, provide information for new (and old) members of the forum. Our pleasure.
My GCA/LVV was diagnosed by a Vascular Ultrasound Scan, the halo effect in the cells of my left armpit were pretty definitive.
Hi, how are you doing? Last I heard of you you were really ill. Hope you're feeling better...
It is potluck I think as to diagnosis. In my case it took them over a year to finally twig after presenting with one symptom after another. Reckon I had both PMR and GCA for a few years before diagnosis. Even then I only had 40mg and reckon that was not nearly enough to clear the inflammation. Nearly 3 yrs on and finally reasonably stable at 6.75mg. How stressed are you and have you had any chronic issues whether financial or personal to deal with? As they don't know what it is or what causes it I suspect you could have it however young you are.
So sorry to hear this. I had similar symptoms that suggested GCA but was 'too young, and male' so mostly excluded, though CRP was 180+ and went to 350 (I was 57 with only 3-4 days worth of cold shivers and sweats). However, battery of tests in hospital all inconclusive and eventually discharged 6 weeks later with PRED and lots of other stuff. Settled down and as I was on 60mg/day, felt bouncy and returned to work. Not a good move. Flare and really under weather. But eyesight not the key issue till I was on PRED and side effects picked up by my eye person. Cataracts etc later and now just managed - 6 years on. LVV or GCA, not sure, and neither do others although notes now say LVV/GCA.... I believe I was extremely lucky with my eyesight and didn't like the read up afterwards of all the risks, so very grateful that a Rheumy saw fit to deal with GCA. My preference, but I AM NOT A MEDIC is to deal with GCA so that you preserve your eyesight and can then deal with other things, if there are any, later. Wish you good luck with accurate diagnosis and proper treatment.
Hey MarkWin. Sounds like it was a proper struggle to get a diagnosis. Glad you were lucky regard eyesight. I’m going to go back to my GP tomorrow and hope he’ll listen.
Hi Molly,My symptoms were like yours, tho I had the severe headache and scalp tenderness 3months before the jaw and tongue symptoms kicked in, I had had PMR the year before and was off Prednisone for 3 months before the GCA started. aPETscan confirmed diagnosis...apparently biopsy not reliable as it does not necessarily get taken from an affected bit of artery.
Do hope you get good advice ASAP, and best of luck.
Can I ask your age if not too rude? Thanks for replying. Sounds like PET scan is most reliable for diagnosis.
I was 74, so in the typical age group, but despite your age, it does sound like GCA and as others have said, early/urgent steroid treatment usually prescribed to head off eye damage. Do hope you get the care you need!So sorry for you, going thro this uncertainty🤗
I had classic GCA symptoms: night sweats , rapid weight loss, jaw claudication and enlarged right temporal artery but it wasn’t until I developed double vision that GCA was diagnosed. Apparently my CRP at 48 was not high enough. I was on steroids a year and methotrexate 2 years but now have been off steroids 15 months and off methotrexate 5 months. I send you and all members my sincere best wishes with grateful thanks for the help I have been given on this strange journey.
"Apparently my CRP at 48 was not high enough."
Typical case of treat the image you have and not the patient. What rubbish ...
Nevertheless I was put on steroids as a precaution ! Do rheumatologists ever consult this forum and do they ever comment? Surely it would be an important learning forum for them ?!
One at least does read occasionally - though she feels this is our space and she doesn't want to trespass! She knows most of this though - and listens to her patients, her patient research partners (who report anything important from here) and anyone who comments in the context of seminars she is involved in.
Thank you for all your help to me and all members. Listening here is probably the most important factor as William Osler would attest: ‘Listen to the patient and he will tell you the diagnosis’ . Hopefully the quotation is correct?!
Basically - varies a bit where you find it probably.
I like this addition:
It was the same when I was a production consultant. I knew and could do any process within my manufacturing remit but always watched and talked to the operatives. They knew what was going wrong and what needed changing but the management in each company never asked them. I knew how to present the changes into financial gain which is the only language management related to. Different discipline but the same philosophy.
UPDATE- Hi all just popped on to thank you all for your help and advice thus far. Neurologist agreed to a trial of steroids, started Pred 60mg on Tuesday and happy to report headache has greatly improved. I’m due to see ENT Tuesday to see if they can add anything. Will keep updating. Have a lovely weekend.
That's good - in that someone is taking notice, not that it sounds potentially GCA, Hope it works and the neurologist deals with it well.
Well that’s a good start -and please do let us know how things progress…
When you have something to tell us, maybe start a new post -not everyone may read this addition… only those that have saved it
By all means add update in post title -but say update to what -so update to GCA diagnosis could be fine
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