I have tapered down to 3.5mg of Prednisone.

[RaisinBran]

I have been on 3.5mg of Prednisone for the past 60 days, and seem to be stuck there. While I am surviving and seem to be living normally each day, I still feel I am only operating at 75%. I am tired and hurt all over my body. My wife has been diagnosed with Amnestic Mild Cognitive Impairment and I'm wondering if the stress from that is making my PMR flare-up.

I rely and respect everyone on this site and you have helped me so much dealing with PMR. How can I determine if my PMR could be something else. Is it normal to have every muscle in your body hurt from the minute you awake to the minute you go to bed? Could my body need more Prednisone? My GP and Reummy aren't much help in determining the problem. Any advice you can share would be greatly appreciated.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear about your wife, so quite possibly a flare-but does sounds as if your adrenals are struggling as well (the tiredness).

So maybe try the flare protocol we suggest -and return to 4mg rather than 3.5mg, I’d stay there for a couple of months (you have a lot to cope with) to give your adrenals a chance to catch up -and then a very slow taper when you feel up to it.

healthunlocked.com/pmrgcauk...

Obviously if the increase doesn’t help, then you may have something else going on, but try that first

[RaisinBran in reply to DorsetLady]

Thanks Dorset Lady, for all of your good advice!

[PMRpro Ambassador]

I'd be more inclined to blame adrenal function lagging behind the change in dose for the 75% bit but it also sounds as if the PMR isn't quite as well managed as is ideal. Two months is probably early days for them to adjust, and as we age our adrenal function tends to fail anyway.

There is one way to find out if your body wants/needs more pred - do you feel better at 4mg? At 83 and as a sole carer, I think if a bit more pred makes life more worth living, that is the way I'd go. Being a carer at any level is stressful and the knowledge this will probably worsen and you are now the memory for two people is bound to be always there in the background. Having the word "mild" in the term may make it sound less of a problem - but not if your wife forgets the pan on the stove and you didn't notice.

I'd take a bit more pred if it helps deal with the situation.

[MiniSpec]

As you are 83 (according to your profile) I would say increase your dose to one where your body doesn't ache all the time, and stay at that dose indefinitely. The whole thing about reducing the Pred dose is based on possible long term side-effects of the medicine. However, at your age I'd be more inclined to think about quality of life than about side-effects.

I'm not that far behind you age wise, as I'm now 74, and will be 75 in September. I've already decided that my quality of life is more important than any attempts at reducing my Pred dose, and will be happy to take my 4mg per day of Pred till the day I shuffle off this mortal coil.

For over a year I struggled at 3mg per day due to the advice of my rheumy, and all it did was make my life less and less tolerable. In the end I took it upon myself to increase to 4mg and since doing that my whole life has become so much better.

I would say that it's your life not the medic's that's being affected, so find a level of Pred that suits your body, and ignore any reducing demands from now on.