Should Pred take away my tiredness or not?

[Safariqueen]

Hello All,

I've only posted once before but I read the post most days and see that many are about tapering Pred. I was diagnosed with PMR in January 2020 and started on 15mg Pred which took away all pain and made me feel 'like a budgie on Trill' as someone else aptly wrote!

Tapered successsfully to 12, then down to 10 and, some weeks later, tried to reduce to 9... But at 9 (and even 10 a bit) the pain in my arms is returning and I'm feeling very tired.

Decided I'd over done the taper and went back up to 10.5 about 3 weeks ago. No pain but I do feel tired a lot of the time. Someone else posted they get to about 11am and then the tiredness descends. This pretty much sums up how I feel - whether I have been active and busy or not.

What I can't work out is whether the tiredness is simply an unfortunate part of the condition that I just have to put up with or whether I should be increasing the pred to get rid of the tiredness.

If it's just part of the condition that has to be tolerated then I will start tapering again in .5 increments using the DSNS method.

What do you out there think?

[PMRpro Ambassador]

It really is part of the illness - it is common to almost all autoimmune disorders. Often at higher doses of pred the pred-effect balances out the PMR fatigue but you shouldn't really use the pred to manage the fatigue except that the fatigue will increase if you start to flare and the inflammation is increasing - just like the fatigue in flu or any other illness of the sort.

Have a read of this:

healthunlocked.com/pmrgcauk......

I don't know that you should be tapering any further just yet if you noticed niggly pains at 10mg. This isn;t a race - waiting a month before trying another 0.5mg reduction won't hurt. If you overshoot and a flare gets going you will lose all the perceived advantage of keeping on reducing.

[Safariqueen in reply to PMRpro]

Thanks you for this. I've had a look at the link(s) which are useful and it's actually reasssuring to know that the fatigue is very common in auto-immune conditions.

One more thing though - how would I recognise a flare? Is that when the pain (as experienced before starting Pred) comes back?

Thanks again.

[PMRpro Ambassador in reply to Safariqueen]

A flare is nothing more nor less than a return of symptoms. It can happen because you reduced too far or it can happen because of an increase in disease activity - either way, your dose of pred is not enough to combat the disease effects.

[Safariqueen in reply to PMRpro]

Thak you for speedy reply .

[Kendrew]

Hi. I am into my 15th month of PMR and started on 40mg prednisolone. I'm now down to 2.5mg and although I've had reoccurring muscle and joint pains after some of the reductions, I've found persevering has stabilised the condition again and those aches and pains have eventually disappeared. Fatigue is part and parcel of the condition but for me, some exercise each day has helped minimise that. Throughout the illness I've repeatedly fluctuated from days when I've felt quite strong to days when I've had to force myself to get up off the sofa just to go to the loo.

[Safariqueen in reply to Kendrew]

Thank you Kendrew. So helpful to realise the fatigue is part and parcel of what to expect.

[tangocharlie]

All I know is I used to have a lot of fatigue and tiredness and I don't have it much now, so I put it down to one of two things or a bit of both, who knows:

1. Changing my diet to low inflammatory almost keto, no grains, sugar, pasta, rice and only very occasionally potatoes, also cutting out high histamine foods

2. Being on more Pred because I'm on regular depo-medrone injections

Also the brain fog has largely gone and I can mentally function much better these days.

I think on balance it's the change of diet, though to me is seems logical that if you are not taking enough Pred to manage the inflammation in your body it is also going to affect your brain, after all PMR is a type of vasculitis isn't it and vascular dementia is caused by strokes etc? This is just my own tin-hat theory.