thoughts - is this a flare or something else?

[Jayneywales]

dear PMR folks

your help and assistance please? Been doing great until about a week ago when things have gone somewhat awry. Been reducing down my steroids and had got to 7mg. Went on holiday to Spain - first trip post pandemic. Had a fab week in the sunshine. Felt great. Walked loads - about 30 miles more in a week than would normally do. No tiredness - slept well at nights - no pain no aches (except for a few blisters!) - all good with the world. Back about a week and felt awful - tired/achy/pain in arms and hips. Carried on - did Pilates class as always last Weds - felt less achy but pain at night crept up and disturbs sleep. Feel about 150. Everything is an effort. Tired (to be expected as pain at night) Weepy. Paracetamol helps a bit - think I need to do something with my steroids? Thoughts? Thanks in advance.

[DorsetLady PMRGCAuk volunteer]

A couple of links to look at - as I'd say it's a combination of both -

first on how to deal with a flare -

healthunlocked.com/pmrgcauk...

second advice on adrenals -

healthunlocked.com/pmrgcauk...

After you've got the flare under control... then go back to 7.5mg - stay there for about a month, and then use a slow tapering plan [see below] and only 0.5mg a time.

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Jayneywales in reply to DorsetLady]

Thank you DorsetLady and PMRpro . I’m off to Paris on Friday for the weekend on Friday so need to get some sort of control! (No flying this time though!). I’ll increase dose to negate a flare and then go back to a gentle taper again. Big birthday in June so loads planned this year that I need to be tip top for! Many thanks again

[PMRpro Ambassador]

Sounds to me as if the adrenaline rush of being on holiday led you to do far too much and now you are feeling the DOMS (some very delayed onset muscle soreness) and the fact that paracetamol helps a bit supports that. There may be an element of flare there too - even a relatively short flight can leave you pretty wacked, the rest is the same whether you are flying for a couple of hours or 10!

You COULD try the flare protocol - add 5mg to your current dose for a week to 10 days before dropping back to the dose above where the flare happened. It might help but it may not if it is DOMS.

[piglette]

It does sound like your adrenals have also come back from holiday and are feeling a bit fed up about it!!

[Jayneywales in reply to piglette]

Loved being in the sunshine after the wet and miserable winter we have had - and really felt back to my ‘old self’ - that’ll learn me!

[piglette in reply to Jayneywales]

Your adrenals are probably feeling the same!!

[tempusfugi in reply to Jayneywales]

Hi Jayneywales, I recently went away for one night with friends and, although I was absolutely fine when with them ('you look v well, M'), I've really been knackered since. Simply can't believe how such a little sojourn had such an effect on me, so I can completely understand how you must be feeling after such a lovely break in the longed for sunshine. Hope the usual good advice from the forum gets you back on track soon. Agree with 'that'll larn you', as they say here in my county!

[Jayneywales in reply to tempusfugi]

Thanks a lot. Upped dose yesterday to 12 as recommended and feel much better today.

[DorsetLady PMRGCAuk volunteer in reply to Jayneywales]

Good. Just make sure you stay on it long enough though to get it back under proper control.

Some think a couple of days is enough because they feel good -but really need 5-7 to be sure.

[Jayneywales in reply to DorsetLady]

I’m off to Paris this weekend on the train so anticipate that I will do 10/14 days just to be sure. And note to self, back to back walking days without rest everyday for 7 days is not good for me!

[DorsetLady PMRGCAuk volunteer in reply to Jayneywales]

Good plan on longer time on higher dose.. and wholeheartedly agree with note to self!😊