live with some pain or increase dose ?

[Sydney0503]

I have pain in my collarbones on my second round of PMR ( ie I got to 0 then flared up, back to 15mg now tapering again ) . I have struggled to get from 7 to 6 and so gone back to 7 while awaiting a rheumatologist appt on Tuesday . My CRP is up again so GP said don’t reduce but I wonder whether it’s possible to ride it out on 7 and it will get better or I just need to bite the billet and increase ? I will talk to the rheumatologist ( 1st appt) but welcome your thoughts . I have been doing lots of painting but this will stop after this weekend so may also help .

[DorsetLady PMRGCAuk volunteer]

“I have been doing lots of painting..”

Think you may have found your own reason, but whether it’s purely PMR or normal muscular aches from the activity, or both it’s difficult to say.

Have you tried painkillers or topical gel on collar bones? …how much is CRP risen? …and one higher reading really needs to be checked rather than a knee jerk reaction to increase.

As you are seeing Rheumy on Tues, maybe stay at 7mg until then..

And a bit more info on your profile/bio would be good please -

healthunlocked.com/pmrgcauk...

[Sydney0503 in reply to DorsetLady]

thank you and will do . I have tried topical gels but only very short term relief . I’ve taken a paracetamol today based on the other response and I think it’s given a little relief . I’ll look at my bio .

[PMRpro Ambassador]

I doubt you are on a "second round" of PMR - the PMR had never gone away but was at a low level of activity and when you stopped pred altogether the inflammation just built up again until you were back where you started.

Pred cures nothing - it is a management strategy to manage the daily dose of inflammatory substances until the underlying autoimmune disorder that causes the inflammation burns out and goes into remission. You start on a dose that is too much and then titrate the dose by tapering slowly until you find the lowest effective dose, the lowest dose that gives the same result as the starting dose did. It tends to be higher early in the disease but then reduces over time - but that can be several years, not the 2 years that so many doctors claim.

The fact the CRP is up again is showing that it is likely that the dose you are currently on is not quite enough. If you persist at too low a dose the inflammation will build up and you will be back where you were yet again.

But the collarbones - almost certainly the painting!!!!

[Sydney0503 in reply to PMRpro]

so would you say hold fire for just one more week til the painting stops or accept it’s not enough pred and try going up 1mg at a time ? I don’t want to have to go right up as I left it too long ? ( ps I do understand the the PMR is “not gone” , I was just trying to explain where I was at in my journey ) . Thanks

[PMRpro Ambassador in reply to Sydney0503]

Mmm - but what I was meaning was that you overshot the dose you needed and there was probably no need to go back to 15mg. The trouble is that once you do that, it often becomes more difficult to reduce the dose again so do be careful about allowing flares to develop as it could get worse. I'd go up a bit and see if it helps - but I'd also dose the painting too! Using the same muscles repeatedly is poison in PMR. You could try some paracetamol to see if it eases that pain though.

[Sydney0503 in reply to PMRpro]

thank you , that’s helpful . I did follow the GPS advice when I went to 15mg as I couldn’t even lie in bed due to pain . I’ll try paracetamol until I get to the rheumatologist. Thanks

[Lonsdalelass in reply to Sydney0503]

Hi just curious...how long were you at 0 for before PMR symptoms struck again? Im at 0 and have been for 5 months. So far so good for me, but I know not to be complacent. Good luck with it all second time round.

[Sydney0503 in reply to Lonsdalelass]

that’s fab news , well done . I didn’t really get there , I was tapering 1-0 when I had a major flare . Sounds like you’re doing great which I will hold on to and keep my fingers crossed I can do at some point x