surprise surprise

[AnniesRyder5]

I’ve been struggling for a few months with Rheumatoid arthritis which I diagnosed myself to my GP. He agreed that the redness and swelling of my hands in particular pointed to that. My subsequent referral to the rheumatologist culminated in him telling me it was my age!

Back to the Gp - he apologised and referred me back.

A very caring and thorough specialist nurse agreed that synovitis in my joints points to RA.

What I hadn’t expected was contained in my letter received today (dictated 25th July, transcribed 27th August) that I am being treated for both PMR and RH, hydrocortisone for the former and Methotrexate for the latter.

I have to admit that the level of pain, tiredness and mobility problems are much more severe.

I’m guessing that an additional diagnosis of microvascular dysfunction and prescribed ranolaxine is a side effect of the undiagnosed RA.

Has anyone else been diagnosed in this way - ie hit and miss!

[Animalover65]

Hi, yes I was told at 65 that all the symptoms which I had for 3 and a half months (which turned out to be PMR) were because I was over 60! Had many tests and Xrays and it was only the eventual CRP test which alerted the doctor. Was advised to take pain killers and go out and do some exercise by one young doctor when I could hardly stand up and open the heavy door!

Glad you found an on the ball caring specialist nurse.!🌺

[AnniesRyder5 in reply to Animalover65]

Thank you 👍

[sidra1968 in reply to Animalover65]

That advice always slays me.."gee I never thought of trying painkillers or exercise/stretching before!" I'd wager we all tried some of each first, before dragging ourselves with pain to a DR appt. after getting worse.

[Animalover65 in reply to sidra1968]

Absolutely sidra1968! I like your sense of humour! 😊😊🌺

[AnniesRyder5 in reply to Animalover65]

I honestly thought that the RA diagnosis would kick the PmR into touch - not thinking I could have both!

[Animalover65 in reply to AnniesRyder5]

I hope you get significant improvement soon. I found this wise forum and my lovely cats a great help. Especially in the long nights when I lay awake and my black cat pressed herself against my head on my pillow. We also held paws. ! 😊

[PMRpro Ambassador]

I got the "what do you expect at your age " - at 51!!!

You can have both but I have to say, the presence of synovitis COULD be a feature of PMR so just assuming that synovitis means RA is not necessarily correct.

And why hydrocortisone for PMR - or have I missed something in your history? Short on time at present catching up after travelling for a week - hence the late reply.

[AnniesRyder5 in reply to PMRpro]

Thank you - your “ what do you expect …” response at 51 made us both laugh!

I think I’m on hydrocortisone because my notes said I was finding it difficult to come off pred. Having said that the methotrexate has relived a lot of the pain in my shoulders, hands and legs.

Is there a way to find out if it’s still PMR ?

[PMRpro Ambassador in reply to AnniesRyder5]

Not really as far as I know unless an ultrasound scan of the shoulder showed the typical findings. Possibly a PET-CT would be even better but they are like hen's teeth,

As I say so often, the question is WHY you can't taper the pred, Is it the adrenal side of things or the illness? How long have you been on MTX? Some patients with a PMR diagnosis do really well on it so maybe you are one of the lucky ones. It can take months to have a noticeable effect in PMR alone and for most it does nothing.

I keep telling Sarah Mackie - the greatest unmet need in PMR is not the drug question it is the diagnosis in the first place.

[AnniesRyder5 in reply to PMRpro]

I saw the rheumatologist yesterday and she thinks I should give the methotrexate a few more weeks to take effect. If I still have a painful shoulder then she will organise a scan.

I have noticed that a couple of days prior to my next dose that the lethargy , stiffness and pain is back with a vengeance.

[PMRpro Ambassador in reply to AnniesRyder5]

But you only take MTX once a week!!! I think the first thing to try would be pred instead of HC. It really doesn't work anything like as well as pred for PMR.

[AnniesRyder5 in reply to PMRpro]

Yes just 8 tablets on Mondays and 10mg hydrocortisone daily.

[PMRpro Ambassador in reply to AnniesRyder5]

10mg HC is only 2mg pred - very low dose.