Another Query Re Returning Stiffness: OH (age 7... - PMRGCAuk

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Another Query Re Returning Stiffness

Nuff1 profile image
8 Replies

OH (age 72,diagnosed PMR/GCA June/July 2018) is currently working through DL's taper from 6mg pred to 5mg and is obviously stiffer hips and knees, has been for a while.

He had OA for a number of years before the diagnosis, certainly since his mid 60s; however given that his PMR/GCA diagnosis was an emergency (saw GP one day off to hospital the next) I suspect the PMR could have been lurking for a year or two.

So the dilemma is:

a) current stiffness is the OA, previously masked by higher pred doses

b) commencing flare of PMR

or even

c) adrenals not yet woken up

When asked how his joints and legs are the answer is always "Not too bad" and he says he can't distinguish between joint pain and muscle pain (Hmm!)

The rheumatologist who treated him in hospital and initially confirmed diagnosis unfortunately had a climbing accident round about the time of his discharge from in-patient and she subsequently died. For some reason there has been no Rheumatology follow-up (seemed to be processed as new referral and subsequntly "lost") and GP has been monitoring.

Getting him to make an appointment to see GP is not easy!

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Nuff1 profile image
Nuff1
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8 Replies
SheffieldJane profile image
SheffieldJane

I think that was Mrs Nail’s Rheumatologist. I wonder if she could advise on next steps?

He needs expert medical input.

Nuff1 profile image
Nuff1 in reply toSheffieldJane

Yes IIRC Mrs. N had appoint with a locum or Registrar Rheumatologist brfore she moved but OH did not.

There's a possibility of getting him to GP when he's fully on 5mg pred (and current GP will be on maternity leave shortly).

It's very difficult to determine OH's attitude to the problem - always has been for the 40+ years I've known him

SheffieldJane profile image
SheffieldJane in reply toNuff1

He’s lucky to have you Nuff1.

HeronNS profile image
HeronNS

As someone who also suffers from OA I'd suggest he continue tapering but slow it down even more. I don't know how that's done with DLs taper but with DSNS you just do each step of the taper twice over, so I expect he could do something similar with the Simple Taper. I've found it very helpful in low doses. If that doesn't work the chances are it could simply be he's at his lowest best dose for the time being. I found out it was OA when I took aspirin for headache and felt about 90% better all over. Your OH could try a regular painkiller to see what effect it has and if it's minimal it's probably still PMR, if he feels quite a bit better, then it's more likely to be OA. Given the timeline it is more likely he still has active PMR and, yes, OA does confuse the issue when pred dose gets to a level where it's not helping OA any more.

Constance13 profile image
Constance13

I have PMR (7 1/2 years) and Polyarthritis and your husband is right - you often can't tell the difference between muscle and joint pain - everything bl.....y 'hurts'!!!

He really should see a doctor asap. He probably needs to up his pred. What pain killers is he on? Heron suggests Asprin! I find it the only thing that really relieves OA pain (or rather I did before I had a massive internal bleed) but under NO circumstances would I use it now. I take Cocodamol.

All the best. Constance

dancersize2 profile image
dancersize2

I was stuck on 6mg for 6 months because attempts to go lower led to pain and stiffness. I had to slow taper to 1/2mg drops after 10 so that was just for 6 to 5 1/2. My rheumy added methotextrate and I was able to get down to 2 1/2 in the next six months. Maybe your OH could try 5 1/2.

PMRpro profile image
PMRproAmbassador

He probably needs to go back to 6mg - he has arrived at the destination for now: the lowest dose that works as well for the symptoms as the starting dose did. If he pushes on he'll end up back where he started.

He will get lower - just not yet. It often works by going back to the previous dose and waiting a couple of months before trying a 1/2mg drop. 6mg is a low dose and safe enough to hang around at for a bit.

Yes - I have one of those sort here too. Though his denial is rather more serious given the state of his heart and lung! (yes, I do mean lung)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi, answers -

a, high doses would have masked OA pain, so some could well be attributed to that.

b, may well have gone below dose required - even on a slow taper it still happens

c. also around time for adrenals to spark. But that more likely to cause fatigue rather than stiffness.

If me, I would put a hold on taper for time being - and as PMRpro says back to 6mg for a few weeks, before trying again.

Then if okay reduce by 0,5mg a time - and taper can be extended - have a look at link (I have revised recently) -

healthunlocked.com/pmrgcauk...

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