Thought this might be of interest here. This is a copy of my reply to the question How long did it take for a diagnosis? on Vasculitis site.
Eight weeks since first seeing GP for what I thought was flu or an old injury giving me head pain. I then saw another GP who alerted my Rheumatolgy consultant. From that point my consultant went into overdrive ‘phoning me at home and even whilst I was on my way to hospital for a scan to have my eyes checked and ultrasound whilst I was there. I was at the hospital every other day having scans-mri-ct-pet…then a biopsy which confirmed GCA all in the space of a couple of weeks. Worth noting that neurology misdiagnosed as neuralgia but did tell me that it was critical that I inform rheumatolgy about night sweats which raised the alert. Rheumatology felt they might have picked it up earlier but apparently it was not presenting as expected(don’t really understand) and apparently they are looking at RA patients like myself who were on etanercept as they have had a couple of others presenting differently and are wondering if etanercept has any part in it.
Nothing but praise for my consultant,the GP and all nhs staff I came in contact with.
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Teekay2
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I am so pleased that they moved quickly, my diagnosis took one day. Your sight is safe.
However you are in for a long haul.
You probably will understand more, if you take the time out to read the BSR Guidelines on the Diagnosis and Treatment of GCA, follow this link and then go to Useful Medical Information.:
Ahh...but apparently mine was Atypical! ....well actually it wasn’t, it was almost text book - as I know now! And so did the ophthalmologist when I saw him.
Water under the bridge, no point twerping about it after the event - hopefully lessons were learnt!
Sounds fairly exemplary! The fast track set-ups are supposed to see a ?GCA patient within 24 hours.
I had textbook PMR apart from bloods - 5 years and even then the rheumy argued. Wanted it to be anything but. In the meantime I had had jaw pain and scalp pain plus thigh claudication - but I didn't know then what I know now.
Was about 1 &1/2 years til dx. So much useless suffering. GP didn’t have a clue. At a family gathering, in a casual conversation with a niece ( who is a doctor), after30 mins of relating my symptoms, she said,” I think you have pmr and need to see a rheumatologist “. Saw rheumatologist quickly thanks to a cancellation. 30 mins with her and she said “ pmr “. So obviously it was not a difficult dx to make for a competent dr. 🤪 . So glad, especially since you had GCA that you got a rapid dx. My best to you.
About 1 week to get appointment with rheumie, dx immediately... put on pred immediately. Lucky to find this forum while waiting so I could go in with my own idea of dx! It was right on.... thanks to all if you! Pays to scour the internet!
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How long did it take for your ACTH to come back? 
Working diagnosis Vasculitis responsible for Neuropathy secondary to R/A. Previous PMR diagnosis
Waiting for diagnosis confirmation on Thursday.
Reducing Prednisolone and normal test results.
I haven't posted for a long time but feel desperate.
