Need some advice please.: Hi, I am diagnosed with... - PMRGCAuk

PMRGCAuk

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Need some advice please.

Rosiemaye profile image
3 Replies

Hi,

I am diagnosed with RA and have some sort of overlap syndrome to have some symptoms of Lupus. Plus I have Fybromyalgia, OA and Hughes.

I am on Methotrexate and Plaquenil. I also mainly seronegative.

I have had severe pains behind my ears and a tender scalp every so often but have recently had pain in both temples. I saw the GP and am having monthly blood tests because of Methotrexate but this didn't show any inflammation so she said it wasn't arteritis. Can it still be that if it doesn't show up in blood tests and would the methotrexate keep it to a minimum anyway?

I appreciate any help.

Regards

Rosiemaye

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Rosiemaye
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PMRpro profile image
PMRproAmbassador

One in five people with PMR/GCA do not show the raised blood markers ESR and CRP so they are not a reliable indicator of whether someone has them or not - they are just supporting evidence when a patient has typical signs and symptoms otherwise. It is also possible that the mtx is interfering too.

If you have an RA/ lupus/etc that suggests you have a rheumatologist already on hand? What not call your consultant's team and ask for advice. Personally, with such a complex diagnosis I wouldn't trust a GP with that sort of decision. That isn't to denigrate the GP - it is a statement of the fact they are generalists and NOT up to scratch with very complex vasculitis problems. You have suspicious symptoms that deserve consideration.

Is the fibromyalgia REALLY fibro? I am quite sure there are a lot of patients with what is really more PMR who are told they have fibro for various reasons - atypical because of bloods, age, presentation - and there are a LOT of overlaps. Main difference: PMR responds to pred, fibro doesn't.

Rosiemaye profile image
Rosiemaye in reply to PMRpro

Thanks for the reply. I can phone a nurse led system but don't want to annoy my GP as she is normally ok. But I think I will try that tomorrow. I have had a steroid injection a few months ago but it didn't really do anything, so would that rule out PMR?

Thanks

PMRpro profile image
PMRproAmbassador in reply to Rosiemaye

Depends - for some people it takes a bit longer for the pred to work but you would expect oral pred to achieve something at least in a week. It would depend how much was in the injection - often people are diagnosed by accident when they get a steroid shot for something else and they realise other niggles have improved and then come back as the steroid shot wears off.

In the meantime, if the headache and other problems get worse or if you have ANY visual symptoms don't hesitate to go to A&E. The visual symptoms can be variable - actual loss of vision whether total or partial, blurring or double vision, especially in the morning or after waking from a nap, a feeling there is a curtain across your eye are all things that are mentioned. Loss of vision, even for a very short time is something to take seriously as it isn't just a sign of GCA, it could be a mini-stroke and that needs investigating too.

Good luck with your nurse tomorrow.

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