What are the markers of a flare?

I am moving homes and juggling crises in daily family life ( not a small issue)!!

When I tried taper from 7.5mg pred,, I had a return of pain, etc. Finally, I settled back at 8 mg. for last 3 wk. The pain eased for a few days, but has returned. I am still dealing with supreme stress, and wonder if my current shoulder and low back pain and fatigue are actually a flare brought on by all that's going on.

I don't really understand what a flare is. Will you enlighten me?

12 Replies

  • First of all, if you are having to deal with any physically demanding activities - like moving home - the last thing you should be trying to do is reduce your dose of pred. To a great extent, that also applies to any stressful experience, stress ups the amount of cortisol your body needs to make (the fight or flight response) and because you are taking pred (an artificial form of cortisol) the feedback system that makes the adrenals produce more isn't working the way it usually does.

    A flare is the word used to describe the return of symptoms after they have been at a lower level. There are fundamentally two reasons for a flare.

    One can be because you have been taking pred at a level that was enough to control your symptoms at a given level of activity of the underlying autoimmune disorder that causes PMR but the activity of that autoimmune problem increased for some reason - the inflammation increased and the dose of pred wasn't enough to stop the pain.

    Or you have reduced the dose of pred that was enough to control the symptoms at the time to an amount that is no longer enough to control the symptoms - and the pain comes back.

    When you start taking pred for PMR it isn't changing anything of the actual disease. What we call PMR isn't the illness itself, it is the effect, the signs of the illness. The real illness is a defect in the immune system which suddenly becomes unable to recognise the cells in your body as "self" and the immune system starts to attack and damage various tissues - joints, skin, blood vessels, whatever. That causes inflammation and swelling, that causes pain and stiffness - a bit like any bruise or insect bite does. Taking pred reduces the inflammation (somehow, it isn't really understood how) and the pain reduces - like using an icebag stops the insect bite hurting so much.

    There are very few forms of autoimmune disease that can be cured as yet so in PMR all that can be done is use pred to reduce the symptoms to manage the effects of the disease to allow you to live a reasonable quality of life with minimal pain. At the start the dose is 15mg or so - that is enough to control the symptoms in almost everybody. Once the inflammation has been controlled you then need to reduce the dose of pred to find the lowest dose that will stop the symptoms getting the upper hand again - for some people that may be very low, for others it may not be much less than the 15mg they started with. The lowest dose that works is the best so that the side effects due to pred are as low as possible. It is a compromise - if you are willing and able to cut back on your activities you will manage with a lower dose of pred, you will probably put on a bit less weight, there is less risk of osteoporosis or high blood pressure and so on.

    Most doctors hand out reduction schemes that are, frankly, downright optimistic! Logic says that if the dose that will control Mrs A's symptoms is 8mg, reducing in 2.5mg steps is going to miss that end point - 10 was fine, 7.5 is not and the inflammation will start up again. But the doctor says to go from 10 to 7.5 - the result is a flare so she goes back to 10 and is fine again. If she had reduced just 1mg at a time, she'd have been fine at 8 but not at 7mg - would have gone back to 8mg and been successful at a much lower dose.

    The most common cause of a flare is reducing too fast or too far. Reducing in tiny steps makes it less likely that will happen. Top experts have said for years that a reduction should not be more than 10% of the current dose - really never more than 1mg at a time.

    However, to complicate things, there is something called steroid withdrawal pain. Some people are very sensitive to taking even a slightly smaller dose of pred and until the body gets used to it you ache and are stiff - very similar to the symptoms of PMR. Except for the fact that steroid withdrawal pain usually starts straight away and a return of the inflammation usually takes a few days to get going (unless the drop was far too big) you struggle to tell which is which. Steroid withdrawal pain usually improves over a couple of weeks and taking it easy helps, a return of PMR with steadily get worse over a couple of weeks until you are almost back to where you were originally - usually needing to go back to a much higher dose of pred to control it and needing to start the reduction over again.

    It is possible to minimise the steroid withdrawal pain by reducing in tiny steps - even less than 1/2mg steps can be done - so that the body is fooled into not noticing the difference. So one form of reduction scheme can deal with both problems - several of us have tried it, it worked for us, and even a consultant is trying something similar with his patients and it is working for them.

    Does that explain a flare for you Purplecrow? Do ask again if anything isn't clear. But for the moment, don't let it get away from you - I would say take 10mg for at least a few days to get it under control and then try going back to the doses you were fine at. But if you are under stress you may be better at 9mg than 8mg until things calm down a bit.

  • PMRpro. Thank you for the info. I think my issue is simply too much "stress" and physically demanding activity. I will go back up to 10mg. till my move is finished, (about a month.). Then I can settle down with the well-defined taper schedule. I really appreciate your experience. Thank you.

  • You know, some think that stress may be one of the (as yet) unknown triggers for the onset of an autoimmune problem. I do appreciate the difficulties you are probably going through, went there with daughter No 1 last year - but is it possible to find some way of modifying it? If not - absolutely no reduction until life calms down!

  • Got the message! You are my hero!! :-)

  • To add to PMRpro's last post about stress possibly being one of the (as yet) unknown triggers for the onset of autoimmune problems, I've just taken a call from a very distressed lady who after 4 years on steroids and down to 5mgs is in pain again and having to increase back up. She then mentioned having just gone through a very stressful period.

    I have heard of similar experiences where flares have followed very stressful events so can understand some people's thinking that not only could the onset of autoimmune illness be attributed to stress for some sufferers, it could also be the trigger for flares in the disease.

    Unfortunately, some stressful situations are impossible to avoid, whether emotional or physical, but the more they can be avoided the better, it seems.

  • My stress is from my house exchange, and children in crises. I think I was doing ok with the sell/buy of new home, but the kid's issues side-lined me.

    Anyway, expected, unexpected and avoidable or not, stress keeps charging through life, so the slight increase of pred. I'm sure I'll get balan.

  • Wishing you well Purplecrow. Hope things settle down soon.

    Great feedback. So informative.

    I've been back up to 15mg having reduced to 8mg. Now trying the slow reduction plan suggested on the forum. You should see my calender! I feel it may be working well. Now at 13mg.

    Have to say today seems to be set for a good day! But its only 7am!

    I am fortunate and still manage to work. But not today.

    I have a longstanding first appointment with physio today. (Booked back in December when I visited Rheumi and could only hobble into her office). But have swelling on foot now!

    Best wishes to everyone. Ann

  • I have found this discussion very interesting. I was diagnosed with PMR this year and responded immmediately to the 15mg dose of Prednisilone. After a few weeks my GP asked me to drop to 12.5mg and I immediately started to get withdrawal pains and fatigue. After battling with this for a few days I asked my GP to allow me to taper much more gently which I have done. I am pretty much on 12.5mg daily now but, have to say, almost every day is a struggle. On the 15mg I felt great but now every day is a struggle. My energy levels are very low and I have a few slight aches, but not pain as such. I feel quite anxious about dropping my dose further..

    I strongly suspect that stress was the cause of my PMR as my husband has had advanced cancer for six years. I am also now wondering whether it it too much to ask of my body to cope with the ongoing stress of his illness, which is only going to get worse, and the reduction of steroids. My struggling to cope on 12.5mg also causes me extra stress as It leaves me feeling unable to manage day to day things and support my husband as much as I need to. However, I am also mindful of the side effects of the steroids so really not sure what is best. I know my GP will be keen for me to continue reducing the steroids, but I feel GPs rarely look at the 'bigger picture' ie what else is going on in our lives. Does anyone have any advice?

  • If you are not coping with 12.5mg there is no point reducing further yet. You say though that you were diagnosed this year and put on 15mg but have tried 2 reductions to 12.5mg already. It's not the end of March yet!

    One of the top PMR groups keep patients on 15mg for 6 weeks or until the symptoms have resolved (that doesn't mean reducing sooner, it means at least 6 weeks, more if necessary). If your ESR and CRP were raised (the usual blood tests) they should have been checked before ANY reduction to see if they were back to something like normal (IRO 20 or so).

    I've been on pred for nearly 5 years, my bone density is fine, I have raised BP for another reason and it is controlled with medication, no diabetes - but that can also be controlled with diet and medication. In the short term at the moment I suspect the benefits of a high enough dose of pred probably far outweigh the downsides. No exercise is a higher risk factor than pred according to the rheumy here.

    However - I read a bit more from your post. PMR itself can cause low mood, even to the level of depression. Pred can cause anxiety. And being diagnosed with a chronic illness that can't be cured is a very difficult thing to get your head round, especially at first before you get to the stage of knowing how to manage your illness best with not overdoing it and resting. Which is obviously difficult for you anyway. Add to this you know your husband isn't going to get any better than he is now and I assume an increasing load is going to fall on your shoulders. You haven't given any indication of time frame nor even mentioned the dread word terminal - but that is what you are suggesting. I think you need to sit down with your GP and really tell it the way it is. More help in some way - real physical assistance and even consideration of medication for the low mood (I'd say talking therapy but I know it takes forever to get it unless you can afford to pay for it) sounds on the cards. Have you a Macmillan nurse for your husband? If you haven't, don't react in horror at the idea: Macmillan are to help you LIVE better with cancer. When my husband had cancer they were great - because she was there for ALL of us, me and the children (10 and 12 at the time) to talk and express our fears and problems.

    Have you seen the reduction plan I have been disseminating on here? It spreads each 1mg reduction over up to about 6 weeks - it worked for me when no other form of reduction allowed me to reduce without pain. If you want, I'll post it again.

  • HighlandCoo, you have many stressors piled up in your life. PMR is one of them! Unfortunately, PMR affects the very system that is supposed to help you deal with stress.

    Here is food for thought,

    back in January, I asked my GP for antidepressant to help me through all that's going on in my life. Between life crises, PMR, prednisone, moving homes, etc, I needed help. The antidepressant helps with anxiety, and I am most appreciative of the benefits of "better living through chemistry". It has helped me continue my journey with a little more grace and composure. Good wishes to you.

  • Thanks for your replies PMPro and Purplecro.

    My blood tests were virtually normal so I don't think my GP regards my PMR as a 'serious' case ... I do realise that PMR doesn't always show up in blood tests but my symptoms and reaction to the steroid treatment were spot on. My reaction now to reduced steroids has been significant. I work part time and also work from home but am really stuggling with this at the moment.

    With regards my husband, yes, his cancer is terminal, but we have no idea of how much longer he has. He has already outlived expectations but the drug that he has been on for 18 months is now showing signs of failing and there is not much in the way of treatment after that, so we continually live on a knife edge. The PMR has caused a huge amount of extra anxiety - not only coming to terms with having a chronic illness a but feeling so limited in my ability to 'carry' us. It has also brought with it very really fears for the future financially. We are currently awaiting a decision on his DLA (which he should get) and the mobility allowance renewal. So yes, a lot of extra stress in our lives. We did have a Macmillan nurse at one point (I organised this) but she retired and we have not had one since. They are so over stretched, even the one we had, we rarely saw. We are not the sort of people to make a fuss so tend to must get on with things but, I must admit, the PMR is making our lives even more difficult now. I used to enjoy walking my dogs but cannot even do that just now - thankfully my husband still feels able to take them out each day and it is good for him to do so. Not good for me though!

    I have made an appointment to see the GP this afternoon as still waiting, after a month, for biopsy results from a gastroscopy done because of low iron stores. I will try to get her to see how difficult everything is and see what she suggests.

  • When I was reducing I found anything that caused stress -- defined in many ways -- could risk a flare. Long flights, for example. Moving house is really stressful -- hence would not try reductions, maybe seek out some physio like gentle massages etc and try to find ways that help you feel less stressed. Lots of lists certainly can help -- they require thinking through what needs to be done, and doe alternate scenarios (e.g. if Plan X doesn't go as planned, here's plan Y). Knowing you are ready and prepared, and getting rid of as many unknowns as possible, can really help reduce stress levels. Best of luck with the move and once you've settled in, you'll soon be ready to start reductions again. For those with them, I'm so sorry about the other difficulties -- these do make managing an illness far more challenging but the important thing is not to feel despair that things won't improve with PMR because they generally do.

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