Big flare up while tapering slowly or...

[waltztherapy]

Hello dear support group.It's a great comfort to be able to read about other's problems with prednisolone tapering and the most helpful replies. Thankyou for sharing.

I am currently tapering at 0.5 mg per month from initial 15 mg dose after PMR diagnosis a year ago.

I have just dropped to 10.5 mg while in remission and life was looking good for nearly a week - then slam, the worst relapse so far, giving me intense pain in my ankles. (My orthotics have recently been upgraded for ankle pronation). I have remained carefully active daily, until now.☹️. Is the pain due to PMR or mechanical arthritic pain, or both? GP arranged a blood test for CRP levels, which were normal 7 weeks ago. Wondering if I should go back up with pred, and if so by how much, and for how long?

It's all so complex.

Grateful for any thoughts.

Good luck and thanks all.

Waltztherapy x

[Nextoneplease]

Hi waltztherapy (love the name btw!) 😊

It’s so difficult to know what causes which pain….have you tried regular painkillers like paracetamol (or co-codamol, or ibuprofen gel) for your ankles? If these help, it is unlikely to be a PMR flare. If they don’t help at all, then yes it could be a flare, although unusual in ankles. It may be that the pred has been masking the ankle pain from other causes.

Try painkillers and if they don’t help, I’d consult your GP.

If you decide it’s a flare, try an extra 5mg of pred for a few days (absolute maximum 10 days), then drop back down to 11mg before starting your taper again.

Good luck, hope you’re better soon ☘️xx

[waltztherapy in reply to Nextoneplease]

Aw thanks Nextoneplease.Re pain relief, I use paracetamol regularly. Also I find ibuprofen gel on the ankles helps, but only slightly. GP looking into inflammatory markers. GP also offered cocodamol, which has helped with earlier total hip replacenent. Will try temporary increase in prednisolone if necessary, thanks for suggestion. Waltztherapy

[DorsetLady PMRGCAuk volunteer]

HI,

As your orthotics have recently been ungraded would say in the main it’s probably due to that….but of course that may have created a flare.

Were they upgraded before your reduction or afterwards? That might give a better clue.

Have you tried ordinary painkillers? If you have and they don’t help, then maybe it is a flare- and this link contains usual procedure for dealing with that-

healthunlocked.com/pmrgcauk...

Just a comment on your quote “ have just dropped to 10.5 mg while in remission” -

you are not in remission as such, you still have the underlying illness, the Pred is just controlling the inflammation caused by that illness.

[waltztherapy in reply to DorsetLady]

Thanks Dorset lady.Authotics were ungraded about 5 weeks ago, interesting that this could have caused the flare. It's the third upgrade in about 6 years. Thanks for clarification on 'remission'. Was quoting rheumy and probably out if context - he's the one who believes that prednisolone can cause some pain and advises not going back up and taking regular pain relief. Thanks also for the link for dealing with flares.

Mutch appreciated. Waltztherapy

[DorsetLady PMRGCAuk volunteer in reply to waltztherapy]

if they were upgraded 5 weeks previously would have that if they were going to cause flare it’s might have happened earlier…but it could be a combination of that and the subsequent reduction. That’s what makes this pesky illness so difficult to fathom sometimes.

Not sure Pred actually “causes pain”, but what can, is the steroid withdrawal you may get after a reduction - and that can be helped by painkillers. But for future reference, one way around that is to use a slower tapering plan…that take a few weeks to get from current dose to lower dose rather than an “overnight” drop. This link gives give a few different ones -

healthunlocked.com/pmrgcauk...

If it is a flare, you might find that just a small increase solves the problem, but don’t leave it too long and allow the inflator build up again…

[waltztherapy in reply to DorsetLady]

Thank you Dorset lady!Love the way you make sense of all the information that comes your way, together with your own experiences, to deliver good advice to those of us who are grappling in the dark!

Thankyou again.

Waltztherapy x

[DorsetLady PMRGCAuk volunteer in reply to waltztherapy]

Don’t worry _ we’ve all been in the dark at times…..😊

[SnazzyD]

Did you adjust to your orthotics gradually?

[waltztherapy in reply to SnazzyD]

Yes, this is the third upgrade in around six years.

[waltztherapy in reply to waltztherapy]

Actually no, alas !I asked about this and was told 'can start wearing continuously right away'!! Ouch....

[SnazzyD in reply to waltztherapy]

Hmm. I ask because a couple of months ago I got my orthotics renewed at the podiatrist’s. I had the riot act read and given written notes regards slowly introducing them, like a ridiculous sounding hour a day. I put them in and then forgot as they were so comfy. I decided that the plan was over cautious because the next day I was fine and the next day. After a week my pelvic ligaments and muscles which are always looking for an excuse struck up like an orchestra. 4 (gentle) osteopath treatments later and I’m almost back feeling a little silly and a my wallet lighter. Just a thought.

[PMRpro Ambassador]

You are not really in remission - only in drug-induced remission and that only as long as you are taking enough pred!

However - when you got the new orthotics did you start wearing them all day every day right from the start? Like any other change in the walking apparatus, you have to get used to them slowly or the soft tissues around the joints will throw a wobbly. And by gradually, I don;t mean a new set of orthotics every couple of years - I mean using them for an hour or two at a time at first and increasing the wearing time gradually.

Is the pain JUST in your ankles and calves or is it in the rest of your body?

[waltztherapy in reply to PMRpro]

I know you're right and I did ask this question of the podiatrist who designed the orthotics for my pronation problem. So it was straight in there, full on wearing from the start, alas.

The pain in the ankles is by far the worst, with minor pain in the calves and knees.

Thanks for thinking of this aspect, ..hmmn...

Waltztherapy

[PMRpro Ambassador in reply to waltztherapy]

The guy who makes orthotics here said about it to me - if they are enough to make a difference in the long term, the sudden change MUST have some effect, And PMR affected muslces are a bit delicate.

[waltztherapy in reply to PMRpro]

Thankyou PMRpro. Interesting to see the connection. Waltztherapy

[Mgpa]

How would you describe Flareup

[DorsetLady PMRGCAuk volunteer in reply to Mgpa]

Do you mean in general, or this particular one?

[Mgpa in reply to DorsetLady]

In general

[DorsetLady PMRGCAuk volunteer in reply to Mgpa]

This link gives some idea -but it does vary person to person -

healthunlocked.com/pmrgcauk...