I'm just about managing on my current dose of 9.5mg of Prednisolone after tapering down to 8.5mg, going back up to 13.5 due to pmr pains, down slowly to 9mg and slightly back up to 9.5.
Unfortunately I still have some stiffness in my hips especially. The question is do I try to do more flexibility/strengthening exercises, or increase pred slightly (which I'm reluctant to do) then do the exercises?
How long did you stay at 13.5mg? Long enough to get all symptoms back under control? Or did you just drop back down after a few days?
If you don’t stay on the increased dose for long to get all things back under control -it just a waste of time really.
And if you’re “just managing” at. 9.5mg would say it’s not enough - how long have been on it?
You could stay longer at that level and see if things improve - but probably more sensible to increase Pred and really get things back under control.
If it’s definitely PMR, then the longer you struggle at too low a dose, the more likely you are to have a full blown flare…and then you’re back to square one.
Thanks for your reply. After just over 2 years and a couple of flares I am now aware and understand the need to manage my pain carefully.
I stayed at 13.5 for approx 4 weeks and slowly tapered every 3 weeks to 9mg then struggled so upped it to 9.5mg.
It's the pointed part of my hips that's particularly painful especially when sitting (the pointed bits in line with my groin) but some stiffness over all of both hips. I try to move as much as possible and just come back home from short walk.
Okay -so you did the right thing -but it seems that 9.5mg is “your” level at the moment- bit disappointing perhaps, but it is what it is! Won’t be forever, but is now.
Perhaps you should get your hips checked out for other things.
Very much depends on whether the stiffness remains stable at that dose - if it does then that suggests it is enough. If, on the other hand, it worsens over time it would suggest it is very slightly too low and the inflammation is building up again, like a dripping tap fills a bucket sooner or later. Leave it and you will end up as you were at 8.5mg, needing more to clear it out and possibly a higher dose to maintain.
When I'm moving the stiffness improves but some still lingers. If I sit for 15 minutes or more the stiffness gets worse with time as you'd expect.I think the 9.5mg is just about managing the pains overall but am wondering if more exercise will prevent the need for more pred and improve the intensity of the stiffness when I sit for 15 mins or perhaps longer. I am conscious of sitting too long and force myself to be active.
I think you really are skating on thin ice! The myogelosis you describe is a typical symptom of PMR and suggests the dose is barely enough to manage things. If you can live with it and it doesn;t get any worse, fair enough. But beware of assuming exercise will deal with PMR symptoms = sometimes it makes things worse. If you have synovitis, inflammation of the synovium, the lining in the joints, the movement associated with more exercise can irritate them more. Or if there is bursitis - I always find more walking makes the PMR bursitis worse.
Can I do anything about the synovitis or bursitis? Besides taking more pred ? Or will taking more pred help and aid my wish to exercise more. I want to help myself.I know I have to probably stay at this approx dosage as I have a pituitary tumour that looks like I have no other choice - given its affecting adrenals, thyroid and testosterone and possibly may worsen 😔
Some of it MAY be improved by stretches and icing/heat - if it is associated with piriformis syndrome for example. There are stretches for bursitis too. They can happen independently of PMR but if the PMR is feeding it more exercise may not help because it irritates the already inflamed tissues.
You have to explore. Sometimes more pred helps - if it does, you can probably do more exercise.
If ibuprofen helps my hip pain and stiffness does this point to synovitis or bursitis? Will an xray show these issues ?
NSAIDs - maybe. x-rays rule out other causes of the pain, don't think they show bursitis. Fairly sure it is MRI or CT you need.
That's my thinking too. Thanks for your help and guidance.
NSAIDS for couple of days only I know- but this wouldnt establish the cause. Going to arrange scan tomorrow. Not convinced increasing pred will help as hips only letting me down and not shoulders as well (except right shoulder which has wear and tear)
I have just used ibuprofen 800mg per day for over 2 weeks at the instruction of my rheumy - but he does insist on me using stomach protection with it. No problems at all - and it did seem to work! It was for sacroliitis - which is pretty horrendous!
I was told not to take iboprofen when on predisolone! Is that an accepted rule?
It is the usual warning - both ibuprofen and pred can irritate the stomach and trigger gastric bleeding. However, it is something that should be OK for certain circumstances under medical supervision and using stomach protection in the form of an H2 antagonist such as famotidine or a PPI such as omeprazole. My rheumy also uses courses of i.v. NSAIDs for similar purposes but that does result in some prize-winning bruises for me! Which is why when it is needed longer he uses oral ibuprofen. I was very wary at first - but it does work well.
Alright for a short period of time and also along with stomach protection of some kind
Dropping your dose every three weeks is a tad fast. If you use the dsns taper it’s over 5 weeks and is kinder to the body. You need to go very slow, at the end of each taper make sure you’ve not got pain or stiffness.
It is difficult if you have other problems. I got stuck at 9.5 but now 9 seems to be OK. I have had to start static bike work for my knee replacement sometime in the future ( year I hope). If my pains are bilateral then to me it is PMR, if not it is the other conditions causing the pain and stiffness such as Escoliois and osteo arthritis in lower back - it is the only way I can work with the preds. I was nervous going, on the DSNS, from 9.5 to 9 but seem to be doing OK. Now more 9 than 9.5 so looking forward to going down to 8.5, I hope! Good luck.
Same to you and thanks
It can be very confusing, but as long as they disappear after taking my painkillers I just carry on as not a flare.
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