Yes, but what IS a Flare?: Of course I know roughly... - PMRGCAuk

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Yes, but what IS a Flare?

Purple-Owl profile image
26 Replies

Of course I know roughly what is meant here by a flare. An increase of pmr symptoms usually caused by reduction of pred dose. But I am having difficulty knowing just what level of increase constitutes a flare - and probably means your body is telling you to increase your dose. I started on 15mg prednisolone 10 weeks ago and am now down to 10mg. I had a dramatic decrease of symptoms at the start of pred. ESR then was 26. It's now down to 4. However I now suffer from tiredness. I have a spate of activity and suddenly have to sit down exhausted. Also shoulders and hips ache from time to time. Is this extreme enough to mean it's a flare? (I reduced by 1mg a week for the last 5 weeks. Now staying at 10 for a month before resuming reduction.) ...Or do most people have this sort of problem without its being a flare? Confused of Worcester Park

26 Replies
markbenjamin57 profile image
markbenjamin57

Greetings Purple-Owl :-)

I just caught your Post - a very interesting question and I'm sure relevant to many of Us Lot here!

I'm not a medic, but this is my 'take' on things both from personal experience and my learning from this excellent forum:

It's probably a matter of interpretation: but in my books the term 'Flare' is often (sometimes a bit too casually..?) applied to describe an increase and / or recurrence of PMR or GCA symptoms. It might be more useful to consider what causes a 'flare' than to try to define it exactly?

A flare can be due to any or all of: reducing the Pred dosage too fast and / or by too much in context (despite the 'best' of tapering regimens), physical over-exertion in the context of the disease, Stress, co-morbidities, infections, viruses, and who can guess what else? Some of us (me included) even attribute flares to changing weather conditions, especially high humidity. There seems to be some evidence to support this idea too.

And just to confuse the issue further (!), it seems to be acknowledged in some quarters that PMR and GCA can have a mind of their own in terms of the Snakes and Ladders course of disease process, independently of other factors. So, I agree with you about 'Confused.com / from...' etc!

If it helps, my Rheumy described (perhaps more accurately?) what many of us call a flare as a 'Relapse'.

Either way, I think the same Rules apply in terms of the management and coping strategies for PMR and GCA and the often unpredictable process of steroid tapering to manage the symptoms: i.e. take things steady, accept that this is really quite a serious illness (even if not Life threatening), don't rush to reduce the Preds, be aware of what might induce a flare / relapse, keep close to the trusted experts, and try roll with things until or unless it goes into remission. Easier said than done for some of us, I know, but this is the challenge for many in coping with and surviving PMR and GCA and the process of reducing or getting-off the steroids eventually.

I'm sure you'll get lots of replies to this one - including some Words of Wisdom from the Venerable Aunties here - they know their stuff ;-)

Hope this helps, keep smiling on the Journey ;-)

'Uncle' MB :-)

Purple-Owl profile image
Purple-Owl in reply to markbenjamin57

What a life-saver it is to have this marvellous source of help and information from experts and fellow sufferers. (Well, I know PMR is not life threatening but I'm sure everyone here will know what I mean.) Thanks so much for your speedy and so helpful and interesting reply Uncle MB! I'm taking all you say on board.

markbenjamin57 profile image
markbenjamin57 in reply to Purple-Owl

You're welcome Purple-Owl - all part of the service! ;-)

markbenjamin57 profile image
markbenjamin57

p.s. And, yes, aside from the pain and stiffness, extreme mental and physical Fatigue are hallmarks of Auto Immune illnesses like PMR and GCA. And low-ish ESR and CRP levels don't always tell the full story...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi Purple-Owl,

You are right in saying a flare is caused because you’ve gone below the level of Pred you actually require.

Your reduction regime is to blame, whoever initiated it has made it much too quick.

Normal regime is to start at starting dose for a period of 4 weeks, although some Drs say 2-3 weeks. I would say 4 at least and preferably 6 weeks - this gives the Pred a real chance to get control of the inflammation that has built up prior to diagnosis.

Then you decrease - again every 2-4 weeks provided you have no return of symptoms. Again I would say 4 weeks is better. If it’s every 2 weeks or less you are never sure your existing dose was enough before you reduce it.

Guidelines state reduce from 15mg to 12.5mg then to 10mg, but many find those too big a drop. So your reductions of 1mg is better, but not every week.

You have to remember that your body continues to produce the cytokines (the substances that lead to the inflammation) every day, so you need to ensure that the Pred is enough to control that new inflammation plus any already there.

Some doctors seem to think that once you’ve started the Pred that’s the end of PMR, it’s not. The Pred only manages the inflammation caused by the underlying PMR it does nothing for the PMR itself. Your fatigue comes from the PMR, and you have to learn to manage that by pacing yourself.

You have to manage the balance between the Pred and the inflammation every day.

Your ESR should be in the normal range. - that shows the Pred is doing what it should.

Not everybody gets 100% relief, but I think your pains are due to a. you doing too much, and b. going below the level of Pred you actually need.

You may find staying at 10mg for a month you’ll stabilise, but if you don’t feel better (by not doing too much) you may need to increase to say 12mg. But, whatever you do, don’t reducebif you still have symptoms.

You might also like to read attached

healthunlocked.com/pmrgcauk...

markbenjamin57 profile image
markbenjamin57 in reply to DorsetLady

Nice to see you back on the case DL ;-) :-) Hope you had an enjoyable Hols?

I agree with you about the possible cause(s) of a 'flare' in terms of over-shooting the standard guidelines for reducing the Preds. All I would add (from experience and my learning here) is that the typically described 'Pred-over-reduction-induced Flare' equation isn't always as simple as that - and should be considered in terms of an individual's personal health context and many other factors at the same time.

If only things were so simple as attributing PMR / GCA 'flares' to a measurably (if possible?) too fast / steep reduction in the Pred dosage? If so, we wouldn't have much to talk about. But, hey-ho, I am but the humble Resident Comedian here (advisedly)! :-D

Best wishes to all who are contributing to, or following this interesting and very relevant Post. The main thing is that we can bounce-around our sometimes differing thoughts and experiences with good humour and intentions ;-)

MB :-)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to markbenjamin57

Haven’t been anywhere!!!

Yes agree that “life” gets in the way of reducing at times, in fact I usually say that, so not sure why I didn’t this time, except that in Purple Owl’s case I think it was due to a too fast reduction and maybe doing too much.

Purple-Owl profile image
Purple-Owl in reply to DorsetLady

Goodness DorsetLady your advice is so valuable! Thanks so much. I hadn't realised I must have reduced too fast. Doctor wanted me to reduce by 2.5mg after a month and I did persuade her to make it 1mg a week. Well, still too fast it seems and this morning I have this aching at the back of my thighs (a new location, usually it's hips and shoulders.) I was going to keep on at 10mg for 2 weeks as you suggest to see if it stabilises. But the aching is insistent even if not extreme, so that in the end I gave in and went back up to 11mg at my morning dose at 10.30am. Will see how I do at 11 for a while - maybe over Christmas....

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Purple-Owl

No, don’t reduce over Christmas. No matter how much you enjoy it (or don’t as some) it is stressful. It’s a change of routine, richer foods, more company - all things that are likely to wake the PMR dragon from its slumbers! 🐲🐉.

Enjoy Christmas, then when things are back to normal think about reducing. A week here or there is nothing in the great scheme of things.

Purple-Owl profile image
Purple-Owl in reply to DorsetLady

Thanks DorsetLady. Actually I meant I would stay at the same (now 11mg as of this morning) over Christmas. Certainly not start reducing then. I don't fancy fading out over the festivities. Happy Christmas to you!! You deserve it.

GCA1947 profile image
GCA1947 in reply to Purple-Owl

Hi Purple Owl

I don't normally reply to other posts because I am not a normal GCA/PMR sufferer as I have Klinefelters Syndrome and Osteoporosis as well, and only GCA for my sins. But on my first reduction I managed to convince my Rheumatologist that a reduction of half a milligram every 28-days was all I could manage and he accepted that. Unfortunately I had my first flare in July 2017 when I got down to 3.5mgs a day all my symptoms came back. The Prednisolone was banged up to 15mg to get the symptoms under control which it did. The other posts on the forum convinced me that taking reductions very slowly was the right way to proceed and so as I'm heading downwards again I'm back on my half milligram reductions once more.

I hope you feel better soon

Colin

polymy profile image
polymy

Hi there,

I talked about this with my Rheumy. Last time I thought I had a flare my bloods were normal. I was inordinately tired and aching in all the normal pmr places. Felt utterly miserable. The Rheumy said it was steroid withdrawal symptoms rather than pmr activity. After persevering for a couple of weeks I increased my steroids anyway. My quality of life has a value!! I am reducing by the dead slow method. Now on one day 3.5 and the next day 4mg. Sometimes we have to take things into our own hands. My Rheumy is not the one suffering.

Ronnie101 profile image
Ronnie101

My experience is the same as Polymy; both rhuemy and gp implied steroid withdrawal, and basically put up with it, and don't increase pred.

Rugger profile image
Rugger

I agree that your reduction in dose has been very fast! I stayed at my starting dose of 15mg for 2 months - GP wanted 3 months!! Then I was on 13mg for a month and 12mg for a month and so on. When I got into single figures, I tapered using DSNS at 1mg per month and still had a flare. Back up from 4mg to 10mg and now tapering at 0.5mg per month.

Me: PMR 18 months. Tapering DSNS to 7mg from yesterday

PS Click on my name to see all this in a graph.

HeronNS profile image
HeronNS

Comment on difference between steroid withdrawal and increase in PMR activity: in my experience I had pred withdrawal at every single taper below 10, despite following dead slow protocol, and eventually dropping only .5 mg at a time, and often over several months. I always ended each taper feeling as well as or better than I had before starting the taper. A few months ago this didn't happen; I made the mistake of trying the taper a second time (from 1.5 to 1) and developed PMR type pain which got steadily worse despite stopping the taper. I ended up having to take 4 mg and count myself lucky to still be at a low dose in order to get the pain under control again. Four mg is quadruple the dose I'd been aiming for, double what I probably should have been taking, and higher than I'd been for about eighteen months. Not able to drop back easily to last effective dose I was sure about, 2 mg. Flare? I think so. But the stupidity about trying to reduce to 1 was happening at the same time as a little cluster of stressful experiences, so who knows, maybe at another time all would have been well?

Tiredness will not be helped by taking more pred. I don't think it's a symptom of a flare. Increasing pain is the symptom to go by if you're considering a higher dose. And at 10 mg you should be introducing a very slow taper. That means gradually dropping by 1 mg over the course of a month, not all at once. Btw I also dropped fairly quickly from 15 to 10 and was fine. It was at 9, after an overnight drop, that I felt return of pain and found the slow reduction plans. Fatigue hit me big time at 7 mg, and is still hanging about waiting to clobber me anytime, although it's gradually getting better.

healthunlocked.com/pmrgcauk...

Purple-Owl profile image
Purple-Owl in reply to HeronNS

Very interesting HeronNS! Though everyone is different, it's so useful to know what happened when you followed a path very similar to mine, both past and projected. I went back up to 11mg from 10 this morning, and am waiting to see results. All very ... um ... exciting....

HeronNS profile image
HeronNS in reply to Purple-Owl

Very possibly you'll only need a day or two. I'd say there's been a handful of times over the past two and half years where a single day at 1 mg more has been enough to get me back on track. The episode I'm in now is a whole new ball game. And I do know people who've had to go back to the beginning, through no fault of their own but because PMR has zapped them hard again. This is relatively rare and most of us will continue our downward movement with just the occasional hiccup. :)

Purple-Owl profile image
Purple-Owl in reply to HeronNS

That's encouraging HeronNS. Tomorrow I have a slightly stressful event but will see if I dare return to 10mg the day after.

1brian profile image
1brian in reply to Purple-Owl

Hi Purple, I started on 15mg and very soon got down to about 5mg. (My symptoms began 1 year and a bit ago). In the last week or so having done a lot of lifting I have had a rather bad back,however the pmr symptoms reduced so much that I have been able to do without the pred for about 5 days. However I now have quite a lot of aches and pains in the usual places so have taken 1 mg this morning.

PMRpro profile image
PMRproAmbassador in reply to 1brian

You must NEVER just stop taking pred when you have been on it this long, however well your PMR feels. You must reduce to zero slowly to be sure your adrenal glands are functioning and producing cortisol otherwise you could develop Addison's disease secondary to having taken corticosteroids and if under stress could have an addisonian crisis - which could make you very ill indeed.

1brian profile image
1brian in reply to PMRpro

But surely doing without the steroids is just like not taking them in the first place and living with the symptoms of the PMR.

PMRpro profile image
PMRproAmbassador in reply to 1brian

Yes. But you have to add in the adrenal function part. It is a different consideration.

You can take pred at PMR-level doses for, say, a few weeks and just stop. Your adrenal function may have been lowered a bit but it will almost always come back quite quickly.

Once you have been taking pred at above 7mg or so for more than a couple of months your adrenal function has been suppressed and doesn't return to normal immediately. You can reduce down to about 5mg fairly easily in that respect, that is a dose of corticosteroid that is enough for the body to function fairly well as your adrenal glands wake up although you may feel more fatigued for a while and stress of any form can make you feel very shaky - illness, trauma, emotional stress. Above 7mg the pred replaces the body's own natural corticosteroid, cortisol, which is essential to life. Lack of it leads to Addison's disease, including the potential to suffer an adrenal crisis which can be life threatening if not identified and treated quickly.

To be sure your adrenal function is returning it is necessary to reduce the pred dose slowly so the body just has to top it up, increasing the amount of cortisol being produced slowly as the pred drops. Just stopping at 5mg, dropping to zero, after a year on pred could be dangerous. It might not be - but it is always a risk that, frankly, I don't think is worth taking.

This should have been explained to you at the outset, you should have a card to carry for healthcare professionals to know you have been on long term steroids - and you should carry it even after stopping pred because it can take up to a year or more for adrenal function to return to normal.

PMRpro profile image
PMRproAmbassador

The fatigue is not affected by the pred - except possibly to make it worse in some people! The fatigue is a feature of the underlying autoimmune disorder - and the pred only relieves the inflammation each day to reduce the symptoms due to it.

Read this and the links included in it:

healthunlocked.com/pmrgcauk......

You have been changing things for your body every few days - it is going roundin circles. That's why we say not to reduce more than every couple of weeks, let your body catch up. Had you done that from the start you'd probably not have felt as bad as you do now but still been at the same dose!

However - it doesn't alter the fact the fatigue is something else and it also has to be managed differently with pacing and resting appropriately. Don't worry about the fact the second pacing article is from the ME people - fatigue in autoimmune disorders is all much the same.

"I have a spate of activity and suddenly have to sit down exhausted" - either your activity was too much or too long! It happened to me when skiing: I had done my usual 3 short runs and thought "I feel really good, just one more..." Two thirds of the way down the 4th run I hit a brick wall of fatigue. PMR bites back!!!!!!

Zhenya profile image
Zhenya

I have been following the thread about what constitutes a flare and am wondering whether this is what is happening to me. I was diagnosed with PMR three years ago and have reduced my preds from 15mg to 4mg very slowly over this period of time. So far so (quite) good with only the odd blip or two...until a few weeks ago. At the beginning of September I reduced to 4mg from 4.5mg with no ill effects. However a couple of weeks ago the unmistakable PMR pain returned in the tops of my arms and legs. It is really quite bad in the mornings when I wake up and I find it difficult to get out of bed, in and out of the bath, etc. During the day it eases off (I take my pred at 11am) and almost disappears altogether. My question is this...should I continue on 4mg in the hope that the morning pain eventually goes away ( I can live with it), or should I increase my dose and, if so, by how much? What I really would like to know is whether by not increasing the dose I would actually be making the PMR worse in the long run, ie allowing the inflammation to really take hold and get worse.

PMRpro profile image
PMRproAmbassador in reply to Zhenya

If it builds up because the inflammation is slightly more than you are clearing out each day with your pred then eventually you could have a flare as the dripping tap fills the bucket.

What interests me more is - why are you wating until 11am to take your pred? Each new daily batch of inflammation occurs about 4.30am. There is a theory that taking your pred at 2am prevents it ever getting a hold so no morning stiffness. I take the form of pred that was developed in response to that theory - and I think it is more than just a theory - it is confirmed for me!!!

If you don't want to wake in the middle of the night (some people do) and your doctor can't or won't prescribe Rayos/Lodotra (the delayed release form I take) then taking your pred as soon as you can in the early morning achieves two aims: there will be less inflammation for it to deal with and it will work far sooner in the day. Lots of people wake early and take their pred before settling down for another couple of hours by which time it will be working and getting going will be easier and also contribute to the improvement.

Zhenya profile image
Zhenya in reply to PMRpro

Thank you PMRPro. I take my preds at 11am simply because I started them at this time originally. I also take a statin and amlodipine, so I try to stagger them rather than taking them together. I will now follow your advice and take the preds earlier, even in the middle of the night (I usually wake any time between 2-4am). Thank you again. Your support and advice is invaluable and much appreciated.

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