I have been on 15mg of methotrexate injections and was at 4mg of prednisolone
Two weeks ago I tried to come down to 31/2 of preds by the Wednesday I was in pain so i went back up to 5 still nothing on the Saturday was in real bad way with a severe headache so went to 10 still not great then on the Thursday in so much pain with the headache and so sick I went up to 20 got easier so called rheumatologist went to see top nurse with 30 years experience never seen her before and said it’s a nerve problem and gave nortriptyline because once again my inflammation is not high enough and she’s not sure I have PmR or gca
I said so why am I on all this medicine I should just stop then , so she sent for a X-ray of my neck took some bloods
Load of bull I haven’t even done anything to hurt my neck I don’t lift anything heavy
I’m not taking any medicine she has gave me
Would love some advice xx
Sorry for the long message just so angry
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Rottsuzi
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Nurse has just called bloods all normal she thinks acute neck pain , I’m really not sure
If it was gca and I took 20mg and it took the pain away then back down to 5 the next day do you think this would take it away that quick or would you need to be on a high dose for longer ?
What a strange concept - a PMR patient presents with signs of GCA and you assume it is a nerve problem. As for "the inflammation markers are 'not high enough' to be GCA" - what rubbish. I would be fizzing too ...
hi , the headache has got a lot better the pain was base of the neck and up the back of the head , bloods normal she says acute pain comes on rapid
They are just not getting to the bottom of this I said a headache that started with a drop in preds that progressively gets worse over a 10 day period with me also putting my preds up does that now show more gca
She said no because my bloods would be a lot higher
She is wrong on the bloods - but no doubt it is impossible to get past her.
I suppose all you can really do is go back down and see what the headache does. That sort of headache could be muscle tension in shoulders and up the neck. But I wouldn't expect pred to make a difference. Occipital headache is typically GCA - although there are a lot of doctors who will try and tell you "wrong sort of headache", whatever that is supposed to mean.
Is there a MECS optician handy? They could have a look at the optic nerve and see if there are any signs there. There is a map with lists of participating opticians on the website.
Yeah - well I had a doctor take that line with me a year ago. "I've worked in medicine for over 20 years and I have experience too ..." She stopped my arrythmia medication because "it isn't doing anything" - I said I thought it had done a pretty decent job for 7 years. She grudgingly said I could keep taking it - you're dead right I will ma'am! I got an appointment with a cardiologist to check - they weren't too impressed.
Get her to tell Snazzy that - who sat in the ED with her vision shutting down and normal range blood markers. There is a fair amount of medical literature about something called "occult GCA" where there are no symptoms at all - including blood markers. It presents with loss of vision, which can be bilateral immediately.
says "Involvement of the OCCA [occipital artery] in TA patients is a frequent finding and may be the only pathological phenomenon in some patients with nuchal pain, occipital headache and occipital scalp tenderness. CCDS of the STA and OCCA contributed to the diagnosis of TA with a high rate of perivascular hypoechogenic abnormalities (stenoses and occlusions) and a low rate of these abnormalities in the control patients. "
says "In conclusion, there is no such thing as a specific headache pattern in GCA, but half of our study-sample describes a unilateral, unremitting, temporal headache,"
says very clearly "The headache is usually localized to the temporal or occipital area. Less often, the pain may be predominantly occipital or occipitonuchal; occasionally it is diffuse."
So she can put that lot in her pipe and smoke it
What everyone agrees on is that it is a new sort of headache ...
think she needs to read this , I said to her my friend in America who is a rheumatologist said do not always go by the bloods and she said we don’t , ye ok
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PMR or not PMR- if not what is it? 
PMR flare?
PMR or not?
Is it PMR, or GCA or neither? 
PMR or something else? I'm lost 
