what to do - advice please

[Billiebobdog]

afternoon all, one of my very occasional posts for some advice

basically I am feeling rubbish! (Aren’t we all they say)

This time last year I note that I was going down from 7mgs to 6.5mgs but put myself back up to 12 mgs because I was aching and then 15mgs, caught a mild dose of COVID as well, with a relatively quick taper back down to 7.5mgs. Since then I have been reducing at 0.5mgs over about 6-8 weeks at a time. I now find myself going down to 4mgs but once again I am starting to feel rubbish, lots of aches with shoulders and upper arms grumbling, legs not really working as well as they should when I get up (until I start moving) etc, also sleep is being a bit elusive at times just to help!

I will admit that I am probably guilty of overdoing it massively and also a lot is outside or in freezing cold venues and it’s my own blooming fault but am wondering if I should put myself up to 10mg for a week and drop back to 4/5 quickly to see if things improve?

Last bloods were taken in July and were all below the reference range.

Last COVID jab was October

I’d appreciate some input please

[SnazzyD]

Sounds like you have answered your question in a way by admitting you are doing “massively” too much. Although advice goes along the lines of increasing when life gets a bit arduous for a bit, I would be wary of using increased Pred doses to deal with your body not coping with what you’re throwing at it. You could be suffering because inflammation increases (might not be at a measurable level) or you are getting muscle damage. My worry is that you end up yo-yo’ing Pred which is not recommended and just generally not allowing the body recover from the challenges. Also, that your cumulative could start to creep up and up. It may be that if your exertions are absolutely necessary and unavoidable you will have to accept that your Pred level may have to be higher than you like with the down side that has. If it is a choice, even if it seems like it isn’t, you need to decide if it is too high a price to pay.

General aches can also be a result of poor adrenal function which I found multiplied any upset my body had, like doing too much in the garden, though the level of too much was not much at all sadly. If this is partly the cause, popping up a dose to feel better just shuts then adrenal axis down again. The adrenal producing process requires the body to keep noticing a short fall of Pred to kick in. It might cope with a day indoors but make it cold and have to exert your body and the cortisol need bumps up. This is fine of your adrenal axis is tippety top.

If it were me, I’d stop the physical challenges and go back to 5mg and if a week like that helps. This will suppress the adrenal glands a bit but not as much as the 10mg. Others may agree with your 10mg plan because they see the PMR inflammation as needing to be deal with first.

[Billiebobdog in reply to SnazzyD]

I have been wondering about the adrenal glands as I am weary but not managing to get to sleep easily, which is beginning to get a bit tedious so a few days being more gentle with myself is the plan before deciding to do anything to the dose I’m on

[DorsetLady PMRGCAuk volunteer]

Like SnazzyD think a return to 10mg is too much.. and 5 or 6mg would be more appropriate if it's your adrenals.

Unfortunately what you describe could be that or a flare - and usual advice for that is contained in this link -

healthunlocked.com/pmrgcauk...

...and tbh tests done in July have no bearing on current symptoms... so get them checked again, then you'll have more idea if it's a flare or adrenals, and you'll have a better idea of how to deal with it.

Info about adrenals -

healthunlocked.com/pmrgcauk...

[Billiebobdog in reply to DorsetLady]

Thank you

A couple of more gentle days is the current plan and not freezing to death before I change the dose and then will take your advice about only going up to 5mgs if I don’t improve

Hoping it settles or it’s a chat with the doctor I fear about more tests

[DorsetLady PMRGCAuk volunteer in reply to Billiebobdog]

You only need to check ESR/CRP to see if they have increased - which then may indicate a flare… not always because lots of things can cause them to rise.. but it’s a start.

[PMRpro Ambassador]

"am wondering if I should put myself up to 10mg for a week and drop back to 4/5 quickly to see if things improve"

Sounds like a plan - BUT, part of managing PMR is the pacing and resting appropriately. I would suggest 10mg for just a few days and back to the last dose where you felt good. And probably stay there until after Christmas but do adjust your lifestyle because you shouldn't use pred as a crutch to do too much unless there is a VERY good reason - like being a sole carer.

[Billiebobdog in reply to PMRpro]

I did realise I had done far too much, it fell that way and all of my own making I am afraid, lesson learnt I say and took today off and haven’t gone training outside in the cold

I’m going to give myself a reasonably quiet few days and see if I can settle my body down

Tx