Flare

[NellieDoodles]

My mum has got a flare, a very severe one with the pain affecting her neck. When it comes on, the pain is extreme. She was on 5mg of pred for 5 weeks when she got the flare. When she has had flares previously, it has usually been at around 2 weeks of reducing that the flare happens, but this time she was on the dose for 5 weeks when the flare occured.

She increased her pred from 5mg to 6mg on Monday but by Wednesday no improvement so she increased to 9mg. Still no improvement last night (Friday).

How long after increasing would you expect the pred to take effect?

Thank you.

[PMRpro Ambassador]

Our recommendation for a flare is to add 5mg to the dose where the flare occured - so that would be 10mg. Creeping up the doses rarely works as you are playing catch-up on the inflammation being formed - and it is amazing how much difference 1mg can make.

But I think she really will need some medical advice if a bit more pred doesn't have a good result - even when it looks like it, it isn't always PMR/GCA. Have you tried some ordinary pain killers, codeine and paracetamol (the ingredients of cocodamol) are OK to take with pred and the odd dose of ibuprofen too - take it with food and preferably omeprazole or the like.

[Pollyone in reply to PMRpro]

Hi there. I’m on a cruise holiday at the moment but think I have started a flare and would appreciate confirmation of what to do. I’ve increased from 9 to 12 today (since read you suggest 5 mg for 12-14 days.) If this amount is sufficient to help with neck, back and leg symmetrical pains and difficulty standing when I reduce back to 9mg in one go is that ok rather than another slow taper. Pretty new to the tapering protocol but will read the link posted by kind Dorset lady. It’s the repercussions I was interested in if quickly reducing after short time on higher dosage. Realise everyone different.

[Pollyone in reply to Pollyone]

Actually just read the flare protocol so think that makes sense. Sorry to post. Just feeling a bit in the ‘wilderness’. Especially as my own GP regularly cuts my steroids down by half from 9-5 mg following the ‘ideal’ taper in the consultants letter to him. Constant battle to get them reinstated as well as managing situation of 1 year in.

[PMRpro Ambassador in reply to Pollyone]

Never apologise for posting - and you haven;t had much time to learn on the job!! Some people really have some very strange ideas about ideal tapers in PMR!

At higher doses you would be able to reduce the dose back to where you were fairly quickly. The short time at the higher dose won't have had long enough to mess up any adrenal recovery that may have already started to take place but above a dose of about 8mg the likelihood of any return of adrenal function having started is minimal. You might feel effects due to the change in dose but for most people that isn't a big deal and should settle in a few days.

[DorsetLady PMRGCAuk volunteer]

See this link re flare protocol -

healthunlocked.com/pmrgcauk...

Maybe once she has things back under control, ease up on tapering for a while..winter is never a good time for tapering -plus it will help her adrenals as well

[SnazzyD]

When you say, “it comes on”, do you mean it comes and goes? Just asking to make sure something else isn’t being labelled as PMR.

[NellieDoodles in reply to SnazzyD]

Yes, when she has a flare the pain comes & goes.

[PMRpro Ambassador in reply to NellieDoodles]

How do you mean? Over a period of hours on the same day or from day to day?

[NellieDoodles in reply to PMRpro]

Over a period of hours on the same day.

[PMRpro Ambassador in reply to NellieDoodles]

So how does a flare manifest for her? Is/has she been pain-free for the whole day previously? If not, when is the pain worst and what seems to relieve it?

[NellieDoodles in reply to PMRpro]

Following on from my last post, my mum increased her pred again up from 9mg to 12mg on Saturday and still not got rid of the pain so yesterday morning she increased again to 15mg - this is now the dose she started on November last year, and up until last night she was still in a lot of pain when it comes on. The area affected is her neck. To think that about 2 months she managed to get down to her lowest dose of 5mg. (She then flared at 4mg)

We are now at a loss as to what to do.

And with it being Christmas we have no chance of getting in touch with her consultant at Basildon hospital.

[PMRpro Ambassador in reply to NellieDoodles]

There should be a duty rheumatologist available - even if not in the hospital, at the end of a phone. But that is the theory and the hospitals are bombed with flu patients. Like Snazzy though, I suspect this may well be something other than PMR. It doesn't sound like a flare due to overshooting the dose - if it were that, the amount she had increased would have dealt with it. And the coming and going nature of the pain that concerns me.

Does anything in particular exaccerbate the pain? Is it localised? Is there a particularly tender spot in the neck?

[NellieDoodles in reply to PMRpro]

No she can just be sitting down & the pain comes on. Yes it is localised to one area in neck.

Are you saying the pain coming on & off is not the norm for PMR?

Because this has always been how her pain has been when she has flares.

She has always responded to increase in pred when she has had flares.

She hasn't had any pain thos morning yet so we are hoping the dose is working now.

How long would you expect the pred increase to take to work?

Thank you

[PMRpro Ambassador in reply to NellieDoodles]

Such localised pain is unusual in PMR - the overall problem may well be PMR but not necessarily this particular one. PMR pain is more constant - until the pred relieves the inflammation and so the symptoms.

I would say she needs some investigation of her neck area, MRI would be nice. WHERE in the neck is it? At the back, side, in a small area, more generalised?

[NellieDoodles]

It's on the back of the neck over one side. As in its not central on the back of neck.

[PMRpro Ambassador in reply to NellieDoodles]

Does it extend down the side of the neck at all? Or is it about where the sternocleidomastoid muscle attaches behind the ear?

These explain - sorry about the voice-overs, really horrid both of them!!!

google.com/search?q=sternoc...

study.com/academy/lesson/vi...

[NellieDoodles in reply to PMRpro]

The first link doesn't work.But no, it doesn't extend down the side of the neck.

The area of pain is on the back of the neck not the side of the neck.

When she has had flares previously it has been in this same place. Usually upping the pred works.

[PMRpro Ambassador in reply to NellieDoodles]

That makes me wonder if she has some degree of GCA - the occipital region is a common place for it to settle. But whatever it is - it should be looked at more closely.