Mini Flare & Actions

[Boss302Fan]

I’m posting this to help those who aren’t sure what to do when a new dose makes them feel discomfort while attempting a taper by noting my approach for consideration.

Background: Week 2 of DL’s 5-7 week Simple Taper; Old dose 2.5mg / New dose 2.25mg

New Dose on Sn, Tu, Th

Old Dose on M, W, F, Sa

Monday morning felt fine. Wednesday morning arose …was that a discomfort in my leg…maybe not. Friday morning (today) …ok, that was definitely some discomfort, maybe a 0.5 out of a 1-10 pain scale.

My response? Took 3.5mg Pred instead of 2.5mg - a 40% increase in dose. Why? I’m assuming I did have inflammation building on Tuesday-Wednesday which the 2.5mg Pred taken on Wednesday did not completely negate. Reasoning is, after the 2.25mg dose on Thursday the discomfort was more noticeable on Friday. So I figured 3.5mg would knock it out.

Tomorrow (Sat) and subsequent 14 days I’ll hold back on the old dose of 2.5mg/d and on 11/14 I’ll again reattempt the taper to 2.25mg beginning with Week 1 of the taper schedule.

This is a big advantage over shorter taper schedules and rather large dose decreases. Obviously my ideal dose at this time is greater than 2.25mg and equal to or less than 2.5mg.

Meaning I went past the ideal dose by a minute amount. This rather than overshooting the unknown ideal dose by an amount that causes a rapid build up of inflammation / pain requiring a larger Pred dose increase and then reinstitution of the same hit or miss approach that resulted in the painful flare to begin with. Instead of having a significant flare I had what I call a micro-flare that’s easily managed.

Who knows, 15 days from now the disease may be at the same magnitude and 2.25mg/d may still be too low. Whatever, I’ll follow the disease and if I’m stuck at 2.5mg, then I’m stuck at 2.5mg for awhile.

It’s a thought process. As an another example; if I was at 8mg and no pain, and flare during a taper to 7mg I’d go to 10mg for a day. If next morning pain gone I’d return to 8 mg. If still pain, that day I do 9mg and stay at 9mg subsequent days until pain gone and return to 8mg for a week and next attempt would be toward 7.5mg. Regardless, I would not start a taper until I have at least one symptom free week.

I think I’ll turn my attention to getting my Rheumy to find out my cortisol status and Adrenal potential because right now I’m winging it and have no clue where that stands. Else I’ll be tracking down an Endocrinologist to help me manage.

What works for me may not work for you, but maybe it will?

[DorsetLady PMRGCAuk volunteer]

We are always saying at such low doses, 0.5mg can really make a big difference - but in some cases so can 0.25mg.

Glad you seemed to have sorted it - and staying put for a week or two is sensible.

Fine margins between success and failure - fingers crossed for success!

[Bleakley1]

Hi, I have tried something similar to you and found it works for me too.

[Shiba64]

Interesting. I've been on 9mg for 2 weeks but have been having some issues with my shoulder/neck. I can't decide whether it's the way I'm sleeping (pillows and bed not right), way I'm sitting when working (I do an office job - working at home) or the PMR. It probably started a bit before I dropped to the 9mg. I did wonder whether to up to 10mg for one day to see if it helped? I'm due for blood test this week so that would show if it's pmr flaring but I don't want to go back to 10mg long term as it might not be the PMR. So wonder if a day upping it would help?

[DorsetLady PMRGCAuk volunteer in reply to Shiba64]

Doubtful a day would be enough to mop up any built up inflammation if it is PMR - it might make you feel better for 24 hours, but that’s about all.

5-10 days would help….it doesn’t need to be long term, but it does need to be long enough.

Have you tried painkillers or different pillows, or stretching exercises to rule out other things?

Plus, don’t assume blood tests will show PMR is flaring, sometimes they lag well behind symptoms….

..and to be honest if it started before you dropped to 9mg, you perhaps should have taken a break in tapering to find out what it was.

Noticed you did post about 4 months ago that you were having issues at 10mg, so would be inclined to say you are trying to push on with tapering when you shouldn’t be.

You are not rushing down to zero, you are trying to find lowest dose to control symptoms at all times.

Working probably doesn’t help either, but obviously you have to, so you need to be a bit more careful than others maybe.

Once you’ve got over this hiccup- if that’s what it is then try and slower taper - this is just one and/or reduce by 0.5mg from 10mg. As you have coated Pred ask for 2.5mg and 1mg - then you can mix and match.

healthunlocked.com/pmrgcauk...

[Shiba64 in reply to DorsetLady]

Hi 😁

Yes you're right 😁 I did have issues dropping from the 12.5mg to 10mg, so when I had that issue I went back to 12. 5mg and doctor then suggested 12.5 to 12 then 11 and then 10. So I was good until about 2 weeks in of taking 10mg. But because I was busy both mentally and physically (moving my mum and working too ) I just thought it was that playing my body up!

However think now it could be mix of everything - busy at work, sitting incorrectly (I do 8.5hr day) then sleeping badly ☹️. I'm taking cocodamol which does help (a bit).

Doctor has ordered bloods as he said whilst can ask patient how they feel good to check levels also - my last test I was on 12.5 and they showed as normal. But now I'm down to 9mg night be different story?! And he's only given me enough tablets to last 2 weeks so clearly wants to check I'm OK before prescribing next lot. So I will discuss doing by 0.5mg drops 😁

I'll try 10mg for couple days and see if it improves - I'm also off work next week so that should show if it's the sitting at computer too that's not helping. I think need new bed as well - I've always had issues with pillows and pillows can feel so different on a different bed! Such joy all this is - NOT 🤣🤣

[PMRpro Ambassador in reply to Shiba64]

If you are under stress - postpone any drop in dose. It isn't worth the risk. You may even need to go up - and that is from a few of our local and excellent rheumies ...

[Shiba64 in reply to PMRpro]

I think it's probably a delayed reaction of stress etc. As it has been full on the last few months. I should realise this as you're all so informative and I read all the posts - so in nutshell I should take heed of what's being said and relax!! Easier says than done when a lot of time we never realise we are stressed 😁😁Thanks again 😘

[DorsetLady PMRGCAuk volunteer in reply to Shiba64]

Well hopefully next week might give some answers on non PMR causes - and try and have a complete rest, if you can.

[Shiba64 in reply to DorsetLady]

Yes hopefully it will and I'll try to rest but got quite bit to do (maybe that's my downfall - clearly expect too much of my body 🤣). But I'll try 😁Thanks 😘

[DorsetLady PMRGCAuk volunteer in reply to Shiba64]

Trouble with working, you always have things to do in down time...but learn to pace yourself... and not half a dozens things at once!

Takes time to get out of a habit of a lifetime of doing that, but if you can it will help you so much. We all know, we've been there!

Have a look at this post from PMRpro - written a couple years ago, but always relevant-

healthunlocked.com/pmrgcauk......

[Shiba64 in reply to DorsetLady]

I know it's hard when you just want to get stuff done. Become both physical and mental challenge 🤣 But I'll try 😁

[Boss302Fan in reply to Shiba64]

What schedule method are you following for your tapers? I’m questioning that not only were your previous magnitude of drops were too large but also you’re not taking a long enough time to go from an old dose to a new dose.

Personally I despise the N.I.C.E. approach i.e., set dose 4 or 5 weeks then drop to next dose for 4 or 5 weeks, etc. Each drop was like stepping off a precipice of unknown height and wondering what the landing would be like. Day after the step down I’d feel woozy then I’d roll the dice wondering if 3 days later I’d have a Flare of unknown magnitude.

[DorsetLady PMRGCAuk volunteer in reply to Boss302Fan]

First 2 or 3 days are usually steroid withdrawal symptoms and then disappear, whereas a flare usually takes 5 or more days to materialise - for most.

But you’ve worked that out now, however new patients don’t always know which is why this advice was written - having been there myself -

healthunlocked.com/pmrgcauk...

[Shiba64 in reply to Boss302Fan]

I tried to drop to 10mg but then went back to 12.5mg then dropped 12 to 11 to 10. To be fair no major issues with those drops and then more noticeable since then. Though I have also been both mentally and physically busy so possibly that causing more issues than drop? Just need to learn to pace it bit better 😁 I'll be taking with doctor when I get blood results back so will steady myself til then. Thanks for the advice 😁

[PMRpro Ambassador in reply to Shiba64]

Just to say I agree with everything DL has said. If you are at even a tiny bit too low a dose, the leftover inflammation will build up. If things start to get any worse at all - bin your scruples about going back to 10mg or you run the risk of getting steadily worse. It may not be until then that the markers start to rise - they need enough inflammation present for long enough to make them change.

[Shiba64 in reply to PMRpro]

Ah I will definitely go back to 10mg for a few days and then see what happens with regards to any improvements and my blood test results. It's mainly my shoulder/neck so hoping it'll resolve 😁

And thanks for taking time to reply as know it's not a good time for you - much appreciated 😘😘

[Boss302Fan in reply to Shiba64]

Few days? I’d give it a week or two at the last dose where you had no PMR symptoms before I’d consider reducing and keep the stepdown small, no more than 1mg maybe even 0.5mg.

[AyJayBass]

Great explanation of a real benefit of very slow tapering and useful to many of us. Thanks!