PMR OR NOT

[Rottsuzi]

hi all , feeling so frustrated once again

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

[DorsetLady PMRGCAuk volunteer]

If 10mg didn’t help then I doubt it caused by PMR -but it could be GCA -and maybe bloods haven’t caught up with pains. Very often the way…

If you’ve done nothing to bring it on, then further investigation is required, but it may be with trying the nortriptyline to see if any improvement.

If it doesn’t, then that’s ammunition for other thoughts, by which times bloods results should be back.

[Rottsuzi in reply to DorsetLady]

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 ?

Thank you for your reply x

[DorsetLady PMRGCAuk volunteer in reply to Rottsuzi]

you would probably need for more than one day….

[PMRpro Ambassador]

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 ...

How is the headache now? Any other symptoms?

[Rottsuzi in reply to PMRpro]

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

I’m honestly so frustrated

[PMRpro Ambassador in reply to Rottsuzi]

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.

[Rottsuzi in reply to PMRpro]

that’s exactly what she said wrong sort of headache

I will call my optician now

Thank you for your help x

[PMRpro Ambassador in reply to Rottsuzi]

Did you ask her what was the RIGHT sort of headache?

[Rottsuzi in reply to PMRpro]

yes she said it would be more front temporal headache

I said it’s coming from the neck to the front

they are adamant it’s not gca

I can move my neck totally fine not sore at all it just feel slightly tight across my shoulders the way my PmR can feel sometimes

[DorsetLady PMRGCAuk volunteer in reply to Rottsuzi]

yes she said it would be more front temporal headache

Not necessarily -has she ever had it!

[Rottsuzi in reply to DorsetLady]

probably not but she has 30 years experience she said and definitely not gca with normal bloods

[DorsetLady PMRGCAuk volunteer in reply to Rottsuzi]

🤦‍♀️

[PMRpro Ambassador in reply to Rottsuzi]

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.

ncbi.nlm.nih.gov/pmc/articl...

ejcrim.com/index.php/EJCRIM...

rcpjournals.org/content/cli...

are just 3 articles I found in about 5 mins in the literature.

The lady should many either come into the 21st century and do a bit of CPD or consider whether she is fit to continue in her role...

[PMRpro Ambassador in reply to Rottsuzi]

Dear me!

pubmed.ncbi.nlm.nih.gov/128...

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. "

journals.sagepub.com/doi/fu....

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,"

And emedicine.medscape.com/arti...

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 ...

[Sharitone in reply to Rottsuzi]

My GCA/LVV headache came from the neck to the front! Poor you, and I really do hop[e you haven't got it!

[piglette in reply to Rottsuzi]

What on earth is the WRONG sort of headache? It sounds like British Rail and their wrong type of snow. What drivel some people talk.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Especially when they haven't had it themselves...

[Rottsuzi]

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

I want to show her this and see what she says

Thank you for all your info xx

[PMRpro Ambassador in reply to Rottsuzi]

That was the idea - bedtime reading. CPD - continuing professional development!!!!! Compulsory in the NHS!