Advice on symptoms on slow taper please.

[Wispa123]

Dear fountain of knowledge , I read this everyday and feel I am a newbie only had PMR for 3 years now . Have had 3 flare ups and am down to 4 mgs . I feel very fortunate as life has been manageable and I last year almost normal so feel bad to complain . However I am really struggling to go below 4 mgs . When I look back it seems I've been at this level for a years off and on. I got down to 3 and had bad flare up when reducing to 2.5 so back to 10 in August for a week and now down to 4 using slow taper method. When I tried to get to 3.5 the aches all started again and as I was away I went back to 4 mgs . My question is , are the ' aches' ( not pain) part of the adrenals waking up? Is that normal ? I am now so scared of a relapse I sort of decided to stay at4mgs till after Christmas then try again , would would appreciate if any of you experience the aches when reducing do they then settle Down and stop ? Hope this makes sense. Wispa 123

[DorsetLady PMRGCAuk volunteer]

Hi wispa123,

Very frustrating isn't It? Maybe 4mg is your optimum dose at the moment. If it is there's no point trying to get below it. Stay where you are for the time being and then try again in the new year. Even if you have to stay on it for some time, it's not a high dose, and it's giving you a liveable life.

Your aches could be your adrenal, but it could also just be life! Higher doses of Pred mask most pain, but as you get lower the normal pains of life creep back in, and you're three years older.

If you continue to have problems you could ask for a Synthacen test to check if your adrenals are capable of working or not.

[PMRpro Ambassador]

I suspect that for the moment you have achieved your Holy Grail: the lowest dose that manages the symptoms. However you try to reduce you will never get lower than that point at any given time. As long as the underlying cause of the symptoms we call PMR is active, every morning a new batch of inflammatory substances is shed in the body - and they go about their (mistaken) task of attacking tissues and causing inflammation. Until that autoimmune process burns out you will need some pred to manage that small amount of damage.

If you are otherwise managing fine at 4mg then the chances are that your adrenal glands are functioning fairly well - they have to start up once you are much below 10mg, 8mg is felt to be about the "physiological dose", the amount your body must make every day anyway. Below that dose your body already has to top up, if it weren't you wouldn't be complaining of aches - you would be so fatigued it makes the fatigue in PMR look a doddle!

if I were you I would accept being at a very low dose - anything below 7.5mg is regarded as low and below 5mg is excellent - and be patient. Wait until the New Year at least to try a 1/2mg drop - and some doctors warn against trying to reduce during the winter at all! And reducing coming up to xmas is asking for trouble!

It doesn't mean you won't get lower, just not yet. Just 2 months ago I couldn't get to 9.5mg, I went back to 10mg for a month or so and then tried again - this time it has worked I think, though it is early days. I would have been ecstatic to be at 4mg after 3 years - it took 4 years of pred to get below 9mg! That was after 9 years of PMR! I've been down to 4mg - but had a flare, not from trying to reduce but from increased disease activity (that happens too).