So fragile!

[Portobello]

Just as my right hip was making a good, gradual recovery (after physio, exercises & ultrasound)- my left one's gone! Sacroiliac again I suspect. But is it normal to be so fragile? I've always been active, have a good diet and low body weight. Could this be a sign I'm not on a high enough dose of Pred? I started on 15 in August, now on 11. So want to establish steady tapering but feeling miserable!

[HeronNS]

As you may gather from my post earlier today I completely understand. I'm currently tapering to. 5 and have no intention of increasing pred dose in the absence of PMR symptoms. More pred would be counterproductive for me, but maybe your situation is different? But unless it's definitely PMR pain I'd advise against a dose increase. Does heat or cold help?

[Portobello in reply to HeronNS]

I don't think it's PMR pain but I am relatively new to this journey! Rest helps and am trying cold and gentle self massage. I just feel like my body's breaking!

[PMRpro Ambassador in reply to Portobello]

I think in the early days a lot of people would identify with that feeling - they are not used to so many physical problems. I think it gets better - it did for me - but maybe not all do.

[HeronNS in reply to Portobello]

I found that pred seemed to weaken my muscles, although I don't think this is a universal side effect.

[PMRpro Ambassador]

I have sacroiliac problems - and my lovely physio does massage stuff that hurts at the time but the difference is unbelievable. Mine is entirely muscular but it does recur. Increasing the dose doesn't really help me although at high doses the muscles are also better.

[tangocharlie in reply to PMRpro]

I have sacroilliac problems, usually just on my left side. I have to be very careful with posture especially sitting, don't do anything that involves rotating the leg in yoga etc. I use a rucksack rather than handbag and never carry anything on one shoulder. Every now and then a few sessions of accupuncture sorts it out for me. I've also had hip bursitis on that side.

[PMRpro Ambassador in reply to tangocharlie]

Can I send you my right side s/i joint? Think it's muscular but it was fine yesterday - reminded me it was there as I got out of bed!

[tangocharlie in reply to PMRpro]

Thanks, but one's enough . When I'm having a SI flare I also follow the postures in a book my GP and physio recommended called 'Treat your own back' by Robin McKenzie. Basically it's a case of lying flat on your front initially then eventually rising to a kind of sphinx position resting on forearms but not putting strain on the neck or shoulders.

[PMRpro Ambassador in reply to tangocharlie]

I'd never get up again! Got the pain clinic tomorrow

[tangocharlie in reply to PMRpro]

Yes that is a problem, I have to have something to lever myself up on after on like a chair. Hope you get something sorted. I do have to take a short dose of Naproxen every now and then for a few days when it flares up (OK'd by GP to take for very short doses).

[PMRpro Ambassador in reply to tangocharlie]

I can't kneel on either knee for more than a few seconds on a VERY thick cushion ...

[tangocharlie in reply to PMRpro]

Nor me, no chance of taking up gardening

[PMRpro Ambassador in reply to tangocharlie]

Silver linings and all that ...

[piglette]

Unfortunately anno domino has a say in what happens to us, oh that we stayed as we were.

[Hidden]

Do you think you had been over using it while your other side was recover g and now it's saying my turn?? 🌻

[Portobello in reply to Hidden]

😊. That's probably true!

[Yellowbluebell in reply to Hidden]

I have that issue with my shoulders. I tend to over compensate when my bad one plays up.

[Hidden in reply to Yellowbluebell]

Sometimes you don't even realise. My right leg does more work and it is getting more ouchy... Bursitis and achilles most recently. No limp lower should emoji I can find. 🤔

[Theziggy]

Really interested in this topic, but no definitive answers yet. I find that my flares start in my left shoulder or groin (I have PR not PMR - but very similar triggers etc)

[PMRpro Ambassador in reply to Theziggy]

I think the inflammatory process is very likely to surface first in a place where the most "damage" has been done before - it just remains a weak point.

[Portobello in reply to PMRpro]

That makes sense. I've decided not to continue with my taper this morning but not to go up- yet!

[Theziggy in reply to PMRpro]

It's my left shoulder or my left groin

[PMRpro Ambassador in reply to Theziggy]

Wrists for me

[Elor in reply to Theziggy]

Hi I’m new to this. I was diagnosed in August and was absolutely pain free when prednisolone was prescribed. I’m down to 9 mg now and as the dosage decreases the pain intensifies . I was struck by your mention of pain in the left groin. This has just developed with me, before diagnosis it was my right hip, shoulders and head. Have you always had the groin pain?

[PMRpro Ambassador in reply to Elor]

Whatever the lowest dose was where you were at the same level of pain as on the starting dose is where you should be now. You should never feel worse in terms of PMR pain at the end of a reduction step than you did at the start of it.

[Elor]

Thanks for this, I’ll get back to my GP