adrenal stuttering

[Elvied]

hi everyone, been reducing my pref by 1/2 a week , and going great .currently at 7.5 mg

I had what was supposed to be a relaxing oil massage , that ended up being a very hard and painful one. I think it may have caused a flare. I’m not sure , but pain in shoulders and hips , muscles feel weak,a week later .

I’m so fatigued. No relief from Panadol and nurofen but some relief from endone. Do you think it’s a flare or are my adrenals stuttering. What does that feel like?

[SnazzyD]

Can you say a bit more about the pain? How quickly did it set in? 1-4 days later? What sort of pain? Any other symptoms at all? Fever? Headache?

I didn’t have PMR, but GCA instead. During my Pred journey massages were right out for me because I felt so rough after them. I know some (@PMRPro is one) have them for myofacial release for pockets of general inflammation and in doing so this can release inflammatory substances that can cause generalised pain. For this reason I stuck to Bowen or reflexology but a nice full body massage was very missed.

With this muscle damage feeling, that sets in fairly soon after massages or physical stress, I found Paracetamol wasn’t a magic bullet and neither was Pred, only time.

Regards adrenals, 7.5mg can be an awkward dose because the glands need to consider working but only just. This can make one feel the deficit in overall steroid such that if the body has anything more to contend with, one can feel floored. Form now you’ll probably find 0.5mg per week far too fast. 0.5mg per month is much more like it but even that can be too fast; it was for me.

Adrenal insufficiency makes you feel utterly fatigued and wiped out. If you go to the FAQ’s find the bit under A about adrenals as it sounds like you need this info now.

[Elvied in reply to SnazzyD]

The was in my shoulders and hips , aching . All my muscles hurt to touch and move

[Kendrew]

Hi Elvied,

Although tapering ½mg a week is tapering by small doses, it does seem quite fast based on all I've learnt here... although you do say it worked ok for you up to this point.

It may however be that any gradual build up of inflammation (because of not taking quite enough medication to mop it up over the weeks) has finally caught up with you and is now presenting symptoms.

Again, I've learnt from here that Panadol/paracetamol won't relieve PMR pain and its not usually advised to take nurofen/ibuprofen when also on prednisolone.

I am currently tapering down to 1½mgs of prednisolone, having been on 2mgs for almost 4mths because of potential struggling adrenals.

I was previously on 2½mgs for 3mths before beginning that next taper, in order to allow adrenals to slowly 'catch up'.

There are two very good slow tapering plans found in the FAQ's section here, but I must emphasise that both these plans taper the medication from current dose to new dose very gradually, so over a good few weeks, and never as quickly as a new dose each week.

The higher doses do seem to be able to be tapered faster but for me, I began tapering much more slowly from around 12½mgs.

The general rule of thumb is that the lower the dose, the slower & more gradual the taper.

During each taper, as my adrenals have begun to further 'wake up', I've at times experienced extreme fatigue (more so than normal) weakness, regular nausea and some digestive disturbances.

It always seems though that as my adrenals get used to making up each 'shortfall' of cortisol from the reduced dose, these symptoms eventually diminish.

With regard to massages, like Snazzy said, they didn't seem to ease or improve how I felt in any way. On the couple of occasions I tried them, I felt quite achey and uncomfortable for a few days after, and they definitely didn't have a restorative effect on me.

I do however enjoy reflexology treatments (a kind of foot massage).... when I haven't got a fractured foot!!

Others with more knowledge will be along but I thought sharing my experience might be helpful as it would give you something to compare your experience with.

[Elvied in reply to Kendrew]

Thank you so much

[DorsetLady PMRGCAuk volunteer]

As Kendrew has said 0.25mg pr week might sound small, but when you are at a dose for such a short time, you aren't sure it's enough before you drop again.. Do that too many times, and it can cause a flare.

Add in a non-relaxing massage to the mix and there may be trouble.

Would say probably a combination of a DOMS [delayed onset muscle soreness], a flare ad adrenals.

[Elvied in reply to DorsetLady]

thank you DL , I’ve been thinking along those lines too .

[PMRpro Ambassador]

Massages are a bit Marmite-ish - Vegemite for you, you love it or hate it! I love a massage, especially a deep therapeutic massage that attacks the myofascial pain syndrome trigger points and clears out the cytokines that they store up. That of course often results in what feels like a PMR flare until the released cytokines have been flushed out of your system. But I expect it and account for it with drinking loads and gentle walks in the fresh air,

And I will join in the chorus - you may have been going fine with that taper but maybe this is it catching up with you. 1/2mg at time, great. Every week? Maybe not so great especially once you get to 10mg when 1mg per month is advised.

[Elvied in reply to PMRpro]

Thank you for that advice. I will stay at 7.5 for another week at least and maybe slow to 1/4 a week or a fortnight according to how I feel.

[DorsetLady PMRGCAuk volunteer in reply to Elvied]

As I suggested previously not weekly tapering -even fortnightly is sometimes not long enough to know current dose is sufficient.

[PMRpro Ambassador in reply to Elvied]

Yes, just want to emphasise the weekly aspect. Believe it or not, even 1/4mg can be the difference between OK and starting to wobble - better to identifiy that before going another 1/4mg and really feeling. Avoiding it is far better and easier than mending it.