Flare or doing too much ?

[Jigsawlass]

Advice needed ! I have been reducing v smoothly , 0.5mg every 8 weeks with no issues. Energy levels picked up once I got to 3mgs. I have been able to do a 5 mile walk with no aches and pains or fatigue. I am currently on 2mg and have had no pain or stiffness at all . However, last week I had a busy week, including a fair bit of walking . On Thursday last week a "dizzy " day came out of nowhere, the kind of day I used to have when working - a lot of rest was needed. Saturday was busy , singing with my choir and wedding dress shopping with my daughter, and on Sunday I felt symptoms creeping in , heavy legs , twinges in shoulders etc . As the week has gone on I have had aching shoulders and arms , and needing to rest . Is this a flare on its way as a result of doing too much ? I'm tempted to add another 5mg for a week or so to knock any inflammation on the head or should I stick to my dose and rest more ?

[DorsetLady PMRGCAuk volunteer]

Is this a flare on its way as a result of doing too much?

Quite likely- so treat it as such… but you probably also need to ease up a bit as well. I appreciate the busy Saturday was probably the final straw, but it may have been brewing anyway.

Don't spoil things now you have got so low…and as many know those last few mgs which we think should be easy to drop, very often are the most difficult…. no wriggle room.

Plus adrenals still not up to speed - nor will be for some time - which can cause the “dizzy” days as well.

[Jigsawlass in reply to DorsetLady]

I'll be adding an extra 5mg for the next week or so and doing less , that's for sure. I'm going to go back to basics for as well, ie afternoon rests etc .

[DorsetLady PMRGCAuk volunteer in reply to Jigsawlass]

Good..

[SnazzyD]

Hello, I didn’t have PMR but it didn’t take much to get muscle pain if I did too much like carry a shopping bag for a few hours, sitting on a hard chair or standing/dawdling for long periods. It usually happened within 48 hours. I don’t know if yours is a flare but what I can say is that seemingly close to zero doesn’t mean you can assume you are physically recovering accordingly. It’s not the zero that makes you better. What I found was that physical or mental challenges added up and the body could suddenly throw in the towel. Adrenal function was the same.

[Jigsawlass in reply to SnazzyD]

Your comment about the physical or mental challenges adding up is spot on !

[Janet57]

I think you answered your own question. If you think you’ve done too much then you probably have. Even at 3mg PMR is still there and you have to look after yourself, pace yourself and take rest. Not easy to do sometimes and it sounds like you have a happy but possibly busy occasion coming up with your daughter’s wedding. Others will advise but I think it sounds like a flare so an increase in Pred sounds right.

[Jigsawlass in reply to Janet57]

Thanks for your reply. It's just frustrating because I have been really well for a while now , so it took me by surprise!

[Janet57 in reply to Jigsawlass]

Completely understand - it happened to me too - but you’ll get through this and start feeling better again 🌷😊

[Charlie1boy in reply to Jigsawlass]

Unfortunately, that’s what pmr does to you.

Hope your issues get cleared up .

[PMRpro Ambassador]

Did you drop directly from 3 to 2mg? Overnight - from every day 3 to every day 2. That is a 33% change in dose - and experts in tapering say not more than 10% at a time. Obviously below 5mg that gets hard splitting 1mg tablets but one of the slowed tapers and making the change over a few weeks helps the body be able to adjust slowly and keep up with producing enough cortisol to top up the pred to the amount the body needs to function.

That is the problem at this level - is it still enough to manage the PMR symptoms AND enough for your body to get on with living at the level you are used to and want.

[Jigsawlass in reply to PMRpro]

I have been reducing by 0.5 every 8 weeks for months now . 3.5 to 3 took longer but 3 to 2.5 was fine as was 2.5 to 2. I will stay put on 2 for a few weeks longer once I have sorted out this bump in the road. I wonder whether I should reduce by 0.25 at this stage , I have a pill cutter . Due to have a phone appointment with my rheumy in September. What do you think ?

[PMRpro Ambassador in reply to Jigsawlass]

That's great, but however slowly you taper, you won't get past the "lowest effective dose" in terms of PMR. The slow taper just makes it more comfortable while looking for a more exact dose level plus reduces the confusion between PMR flaring and signs of steroid withdrawal which tend to mimic the symptoms of the disorder the pred is being used for.

And it is easy to underestimate how slowly the HPA axis (the interlinked hypothalamus, pituitary, adrenal glands) adjusts. It isn't a single factor, it is the triggers on the way to the adrenal production of cortisol that must all sort themselves out and get the whole pathway right. Lots of potential for wobbles when any one cog doesn't quite get it right.

Me? I'd have a rest for a month or two and set off again when you feel stable again. At this low dose there should be no hurry.

[Jigsawlass in reply to PMRpro]

That is v helpful advice re the HPA axis . I will sit tight at 2mg as you suggest . As you say , it's a low dose so no hurry

[PMRnewbie2017]

I would also consider 0.25mg below 2mg as you suggested.I fell into a similar trap last year. I was at 2mg and reducing to 1.75mg and a trip to Rome for 5 days was too much for me. It's indeed so frustrating.