Well there you go, then!

[sondya]

Hi friends. Back again.

Got over GCA and was proud I 'kept it in my head'. The last prednisone tab was June 4 last year. The end of those years of terror. But life's not that simple. A few months ago, came the onset of pain. Legs, knees, hips, elbows, upper arms and shoulders. Legs went into a sort of hot cramp, had to wait a few seconds before it disappeared and I could walk. Then after a few weeks, slowly, the legs were ok, arms functioned below the elbow, driving and playing petanque and playing pickleball was ok. But through it all there was pain.

I saw the GP, who prescribed a short burst of pred and in days it was all over. Spoke too soon. Think the short burst was a too short joke - it all came back to upper arms and shoulders. GPs got creative in coming up with diagnoses: it's frozen shoulder, they said, could be lupus (WHAT??), not PMR as CRP and ESR were normal. Finally, in desperation, they referred me to the hospital rheumatologist, who had treated my GCA. Nice to see him again. He said it was PMR and I'm on a longer treatment of prednisone. Will see him in a couple of months' time.

Yesterday I had my first three (15mg) tabs and off to play petanque.

Next day, amazed to find all the pain had gone. In one day?? A bit quick, surely.

Today it is the same. No pain - not even a residual pain. Hope it continues.

As an aside, the GPs prescribed celecoxib anti-inflammation and pain relief. Didn't do anything. Blood pressure was also 'off the chart' and prescribed a drug for that. But I read that celecoxib should not be given to those with high blood pressure. So stopped it. It was the right thing to do, said my rheumatologist.

[Hidden]

Really sad you have PMR now but glad you have found relief from a proper dose of pred. Just try not to overdo it. The pred pain relief euphoria can bite you in the bottom if you push yourself too far too far. 💪🌻

[DorsetLady PMRGCAuk volunteer]

Hi sondya,

Sorry to see you back again ...in the nicest possible way - you know what I mean!

Let’s hope that you can keep things under control all the way through and have a “good” journey - at least with experience you’ll won’t take any risks if symptoms do return at any time.

If you have the YouTube links you put up on Facebook it might be a good idea to put them on here. Should be able to do in a reply. Was thinking about doing it myself, but as you’re on here again.......😊

Take care. x

[sondya in reply to DorsetLady]

Thank you Sue. Attached is the YouTube video on PMR. It helped me to understand.

youtu.be/mp7d6f_xu3Y(Not working as expected?)

[jinasc]

Did you have PMR along with the GCA?

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

GCA only

[sondya in reply to jinasc]

No. And I thought I would never get it!

[SheffieldJane]

It is nice for us to see you again and the reason is rotten luck. It sounds like your body is well drilled this time - responding so quickly. Have I misunderstood, or have they started you on 45 mgs!? Or do you mean 15 mgs a day ( more usual). I hope this is a smooth short journey with PMR and your active life is not curtailed too much ( once more). Best wishes to you. My PMR is very reluctant to leave home - and it will. X

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

15mg

[jinasc in reply to DorsetLady]

Glad you are around...............I was sort of assuming that once the GCA had gone into remission and the pred was stopped, it then allowed PMR to raise its head over the time he was without pred. It happened to another bloke I know..........and about the same length of time. Auto immune illnesses really do have a mind of their own.

It was probably kept well under control with the higher doses.

I think you and three others I know are really rare birds.

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

Very rare it all sorts of ways! But in a month or two, I may have a bit more info about my current inflammation rise!

[sondya in reply to SheffieldJane]

Hi Jane

Gosh - did I say that wrong? Each tab is 5mg to be taken in the morning with breakfast

(reading the instructions on the bottle)

3 x daily for two weeks

2 x daily for four weeks

1 1/2 daily for four weeks

Then stop

[DorsetLady PMRGCAuk volunteer in reply to sondya]

That doesn’t sound right. You will have been on Pred for 10 weeks and over the physiological dose of normal cortisol production (equivalent to 7.5mg) so your Adrenals will have switched off. You can’t just stop the Pred.

What’s the plan after that? Are you seeing Rheumy before then?

[sondya in reply to DorsetLady]

Apologies - think as this was on the bottle, it was the chemist's interpretation. I will be seeing the rheumatologist in two months' time.

[SheffieldJane in reply to sondya]

Oh Sondra that will make you feel awful. 15 mgs in the morning and if you are feeling fine do dsns - please! Never stop suddenly, however much you resent the d**n thing.

[sondya in reply to SheffieldJane]

Promise . . . I won't.

[PMRpro Ambassador]

Sounds as if you have a rather better rheumy than GP!! Why anyone would rather hand over celecoxib than pred to someone in our age group is beyond me!

My first 15mg dealt with almost all the pain in under 6 hours! But if it is PMR - his less than 3 months of pred is optimistic even if everyone I know who has been there twice says the 2 episodes were totally different,

[sondya in reply to PMRpro]

It's the old cunning plan B . . . if you are on the nhs (or our equivalent) you have to be referred by a (costly) GP to see a hospital rheumatologist (free). Clumsy, as not one GP (in the medical centre) got it right. Referring me to hospital was their way of saying "too hard basket, I give up". They have my medical notes, given my past history of GCA, surely it would have been glaringly obvious and take no more than a nano-second to rule out frozen shoulders (say no to leaning on the frig) and lupus - where's the rash?

The celecoxib was a shocker; it was on the same prescription form with the heart pills! It took me minutes to refer to our trusty online 'health navigator' to discover this contra-indication. And they charge to know?

Another appointment has been made for two months' time. Fingers crossed.

(Anyway, nice to talk again, Eileen. Hope you are well.)

[PMRpro Ambassador in reply to sondya]

You'd think their computers would be set up to flag up interactions/contraindications. I don't even trust pharmacists now...

[Telian]

That is bad luck you have PMR, but sounds like you have a better Rheumie than GP!

The taper sounds a little rushed, don't do it at that pace, you know what might happen!