Coping with flare

[4683Louise]

I see where people talk about having flares, but I don't know what, if anything (other than rest), is normally done in response. Is a flare something that just has to run it's course, or is there anything to be done while it's going on that helps calm things down and maybe shorten it?

I'm pretty sure a flare started this afternoon- more like spontaneous combustion the way my face feels- all over skin burning, muscles aching, exhausted. I'm not surprised as I can imagine my activities over the last couple days would count as 'over-doing it'. I'm also not complaining (I understand there are times that "pay to play" is part of the journey) or worried, just want to learn the best way to handle flares when they do happen.

Thank you for your thoughts.

[SheffieldJane]

You might be able to rest it out if you recognise it as a response to overdoing things. Expect it to incapacitate you for a fair few days though. A full blown flare is normally in response to there being too little Prednisalone in your system to control the inflammation, then the only way is up. You would need to increase your dose to the last one you were comfortable at and stay there until everything settles.

Sometimes you can get away with increasing your dose a little to give yourself a boost and then come down again after a day or two. It doesn’t seem to ruin a taper and may head off a flare. See your doctor if you are worried and you’ve got a good one.

[judyb100 in reply to SheffieldJane]

Thanks to you and the other people who replied to this post. I've printed your replies out as good guidelines for when I have a flare (right now!). I hadn't realized that I should try resting, which is what I'm doing now. Very boring, but I am feeling better.

[Hidden]

Are the pains the same as undx PMR?

It's getting used to what pain indicates what. If you taper and the next day you get aches and pains for a couple of days then it is most likely steroid withdrawal. However if stuff or pain return AFTER a couple of weeks then it's most likely to be PMR symptoms so stop taper. If no improvement go back up to dose you were last ok. We usually add the caveat speak to Dr ahead to confirm you can control that.

The third thing is that if you have done more activity then it's just your muscles protesting. A few days rest and they should be ok. I find it's slightly different pain. And like you say occasionally it's worth it. But remember the PMR stops muscles "repairing" as fast as usual. I remember warming my cold hands on burning thighs. Helped both parts.

Sounds like a pain in the a@#£ but I make a note daily as to how I feel and what was happening weather wise etc. It's easy for me as I have to take blood test and insulin so record it all in a lively note book.

[Klah]

After 4-1/2 years I am quicker to know I am having a flare and I can rest for a few days...maybe up the dose by 2m...and then resume the dose. However, for years I would not recognize the flare, would continue all my activities then, Wham!...it would take me as long as two weeks to recover...but again, never really increased my dose by very much....but did have to rest! Rest😊

[PMRpro Ambassador]

A flare is a sign your dose of pred is not enough to manage the amount of inflammation. If that is due to reducing too far or the activity of the disease increasing then you need more pred.

If you have been overdoing it you may not need more pred - but you probably need to rest more for a while.

The other option is that you tried to reduce your dose in too large a step - and then your body objects to losing its expected "fix". It tends to start immediately you drop the dose, within 24 hours usually and then improves over subsequent days. A flare usually takes a few days to develop and then gets worse over time.

[Ricketts40]

Thanks Louise I too didn't know what to expect from a flare as have only just started taking Pred (2 weeks). I have noticed though that as soon as I take my Pred I get a pain in my neck on one side. Why when I've just taken Pred? I told GP that I increased my dose by 2.5g to 7.5g just in case it was a flare.

[SheffieldJane in reply to Ricketts40]

I get a headache when the Pred first gets into my system. Do you think that you are tensely waiting for something to happen? Distraction maybe?

[Ricketts40 in reply to SheffieldJane]

Hi SJ, on reading more of some of the replies, problems etc people on here have I've just noticed that some have tooth problems too. Last December my dentist told me that my ex ray showed that the area between two of my teeth was quite opaque probably due to an infection, and asked If I wanted it removed. Vanity won and I replied well it doesn't give me any pain so leave it. Now, in hindsight, perhaps thats where all these problems I now have started. I think I will go back to the dentist while on Pred to see if infection is still there. Hopefully an extraction might be the cure all.

[SheffieldJane in reply to Ricketts40]

You never know, it’s got to be lowering.

[Hidden in reply to SheffieldJane]

By the way SJ they have planted a new tree where the infected one was cut down in my street. At least 1 replaced.

[SheffieldJane in reply to Hidden]

A tiny twig-like treelet ? I hope it lives, a lot have been vandalised already. The SCC plan was easy to maintain lollipop trees to replace our wondrous Limes and Oaks. Your tree was ill though, it’s the scores of healthy trees that they are felling that break my heart.

[Hidden in reply to SheffieldJane]

Fingers crossed it'll be big enough to survive before they notice it. Although they have moved the tree 15ft to the side (good idea given infection) but the guy that lives there will take action if he doesn't like it. I mean direct action at the poor tree. I am rubbish at tree names but I recognise the leaf shape but just can't remember what it is 😂😂😂

[Hidden in reply to SheffieldJane]

Ash

[SheffieldJane in reply to Hidden]

Nice, may it get stronger every day along with you. 🌳

[PMRpro Ambassador in reply to Ricketts40]

You were started on 5mg? For PMR? Did it do anything useful?

[Ricketts40 in reply to PMRpro]

I was started on 4x5mg per day, then, after 1 week went back to GP who said she wasn't too sure I actually had PMR so has made an appointment for me to see a Rheumatologist. I am trying to reduce the Pred by 2.5 one day a week while reducing the days taking the 20mg 1 day less each week. I read this system on HU. Even though my GP told me to reduce by 5mg per week I told her I was only reducing by 2.5mg following HU system, which she agreed to. Originally I had very heavy/achey upper arms for about 4 months then shooting pain in the left side of the back of my neck hence my GP visit.

[PMRpro Ambassador in reply to Ricketts40]

Did the starting dose work? How fast if it did?

[Ricketts40 in reply to PMRpro]

Yes it did work for the arms after just a couple of days, but still had a niggle on my left shoulder, due I think to a rotary cuff injury sustained 5 years back for which I had steroid injections. Told the GP this, as mentioned in previous note she wasn't sure I have PMR so has made an appointment for me to see Rheumatologist. I don't really get tired as others on here do either although I do have trouble with sleeping throughout the night.

[Telian]

I'm coming in a bit late here and the advice already given is good - I'm stating the obvious but the key is learning the difference between a flare or withdrawal symptoms - this can be tricky as they both start out similar - but you will get to know depending on what you have been doing recently.

If you've been over doing it, then your body will object and slowing down is vital in the first instance, if you've been trying to reduce you will get some reaction but this should settle after a couple of days - if none of those then getting your bloods checked can, not always, indicate a flare if inflammation markers are raised. There are so many scenarios to consider. I'm not one to increase without my Doctor's say so - I've always suffered painful withdrawals mainly, not had a flare that I know of. Others have no problem in adjusting pred themselves, we are all different.

Whatever your lifestyle, you do need to pace yourself in future, as you won't get away with the same activities at the same rate.

From what you say it sounds like you may have overdone it and I hope you are feeling better now if that is so - has rest made a difference to you now? You should see your Doctor/Rheumy and keep them in the picture also, particularly if symptoms are prolonged.

As Poopadoop says keep that all important diary, I've kept one since day one (4years ago now) for the accuracy as I could not always recall full details of what happened when in relaying to my Doctor, he likes that and it saves prolonged conversations.

Hope you're getting to know your illness better each day 4683Louise and best wishes to you.

[Aleish]

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