overdid everything - flare protocol for 10 days - back to 1.5 mg over last dose but 2 weeks on I am struggling.

[mullochs]

I am 2yrs + post PMR diagnosis and have survived learning from this forum which makes sense of symptoms/side effects and how to handle them.

However - this time I have overdone everything - finally moving into my lengthy 2yr renovation on Mull two weeks ago.

I stupidly moved/carried too much at my old house - couldn’t weight bear on hips /shoulders gone . Increased Pred 5mg to 14mg for 10 days which worked pretty quickly.

Dropped back to 10mg (1.5mg above where I was doing a DSNS 9-8mg)

This got me back up to Mull and through the removals feeling relatively OK. Circumstances kept me busier than I should have been thereafter and I have gradually gone down hill. Pain/stiffness which lasts most of the day, fatigue, light headed, weak, unbalanced with some nausea.

Is it possible to rest my way out of this state or should I be upping my Pred ??? Presumably not a good idea to repeat flare protocol ?

Thank you for your advice - so valuable…

[piglette]

As you say it is not a good idea to yo yo, but you could have caught a bug of course too. Having said that it is not a good idea to let yourself try and put up with PMR pain, as PMR always wins, so you may need to increase again to hit the PMR on the head. The mantra for PMR is rest, rest, rest and it seems that you may be overdoing things. PMR likes to be respected.

[PMRpro Ambassador]

I'd say that the primary problem you have is that your adrenal function is nowhere near up to managing what you have expected of it. All that you describe can happen with adrenal insufficiency - even the aches and pains - and then you have some DOMS on top as well as potentially PMR protesting too.

I'd go back to at least 4mg, possibly even 5mg. Because whatever you want on Mull - it definitely is NOT an adrenal crisis. It is a long way to an ICU.

[mullochs in reply to PMRpro]

Thank you as I suspected 🙄

Do you mean repeat flare protocol ie 15mg for 7-14 days ?? OR back to 15mg and repeat weaning process by 1mg every 4-6 weeks or how ever long symptoms dictate between drops - until I reach 10mg again ??

Thank you very much - of course I shouldn’t have attempted this very stressful adventure at my age and stage but looking out the window it still seems worth it ?

Thankfully the GP service here seems well informed and very cooperative. Emergency access to ICU Glasgow is very quick by helicopter😅

[PMRpro Ambassador in reply to mullochs]

Helicopters and planes from the Isles to Glasgow can't always fly - and now and again, the ferries don't run either so even the slow way in an ambo isn't guaranteed.

Sorry - mea culpa, I misread your doses. As a result, it concerns me that you are experiencing adrenal insufficiency symptoms at 10mg. you really shouldn't be and that suggests you really have overdone it A LOT. So you may well need 14 or 15mg - did you feel well at that? If so, why not try 12,5mg first? That may be enough, If it is, then taper slowly again once you are stable and feeling better.

And of course, it is possible to have picked up something along the way.

[mullochs in reply to PMRpro]

Thank you - I will give 12.5 a try and go from there.

I was good at 14mg for a week but found brain fog, fatigue, unbalanced, light headed kicked in at around the 10 day mark so took that as a cue to reduce to 10mg (1.5 mg over where I had been) Felt better on 10 mg but over another two weeks have gone back to the same place. Maybe I should have dropped half way to 12.5 mg first ?

Moving house is a big stress for anyone which I did acknowledge - but there is always some pressure which doesn’t allow you to switch off . I am on my own so no problem sharing . Hoping this is the result of mega stress and not some new problem.

Thankyou for your time and input.

[PMRpro Ambassador in reply to mullochs]

But it wasn't just moving was it - it was a major project leading up to the move. And smaller steps really are always preferable.

[DorsetLady PMRGCAuk volunteer]

For the record , I agree with PMRpro - you definitely need an amount of at least 5mg, maybe a lot more … and as is often quoted for other reasons, with an illness you do need to consider location, location, location!