advise on reduction following flare.

[lesley2015]

Hi All

I have just has a flare, got down to 14mgs and (stupidly) despite having a few aches and pains reduced to 13 (slowly I might add), I had hoped it was just my body, but following a whole week on 13mgs - felt awful, increased aching and awful headache. Yesterday I woke up feeling really poorly, forgotten how I had felt before preds. So looking at my instructions increased to 30mgs to hit the inflammation on the head. My question is - in his written instructions he says with a flare and the GCA, go up to 30 for one week and then reduce to the last comfortable dose, which I managed at 15mg. However, when I last spoke with him he verbally said drop quickly ie wk 1 25mg, wk 2 20 mgs and so on until I reach my comfortable dose, so a little confused.

Anyone with experience of this please. I have flared before but not when I have got so low.

Many thanks

[DorsetLady PMRGCAuk volunteer]

Hi Lesley,

Although I did go back up a couple of times in the past, I didn't have any symptoms, just high readings, so haven't been in exactly same situation.

Would suggest you stay on 30mg for a couple of weeks, and only then if your pains have gone, reduce. You should be able to reduce in 5mg steps until you reach 20mg, and then I would drop by 2.5mg until 15mg, but give each reduction a chance, so stay at each one for 2 weeks.

I realise that's slower than your Rheumy may recommend, but there's no point in going up, and then coming back down again too quickly.

[lesley2015 in reply to DorsetLady]

Thanks Dorset Lady, pain much reduced already, so definitely a flare, very frustrating!! Thanks that is what I thought, in theory can you go from 30 to 15mgs do you know?

[DorsetLady PMRGCAuk volunteer in reply to lesley2015]

Hi again,

In theory, you can go from any dose to any dose I suppose, but in practice that's a big jump -50% so I wouldn't personally want to try it.

The recommended reduction is - not more than 10% - but that is when you are doing 'normal' reductions, not down from a flare. I think the general consensus is that following a flare you can come back down to your comfortable dose quicker than that, but I wouldn't be able to say how quickly.

[lesley2015 in reply to DorsetLady]

Thank you Dorset Lady, will take it a bit slower

[DorsetLady PMRGCAuk volunteer in reply to lesley2015]

Good idea. I know it's frustrating it is when you have to increase the Pred. But for the sake of a few weeks over 2 or 3 years, or more for some, there is no point in rushing things.

Normally I'm quite an impatient person, using wanting things done yesterday, but GCA has taught me sometimes you can't rush things.

Or maybe that's just old age creeping up😉

Good luck.

[PMRpro Ambassador in reply to lesley2015]

Theoretically yes - but as DL says, could be a bit uncomfortable! There is no rush - you might end up having to go back to 30mg again if you hurry.

Slowly does it - and the tortoise won the race remember!

[lesley2015 in reply to PMRpro]

Thank you PMRpro - will go slower. Just made another decision , huge for me, to get signed off work - initially for 3 months but may take the maximum and then find another job when well enough with less stress, frightened if doing well and I go back stress will start it off again. So busy trying go save spoons for work I have nothing left for family, or to do little things I enjoy. I think carrying on as I am will just prolong the condition and cause further flares.

I thought I could beat it - I am stubborn, but for now I am going to give In and rest and try and enjoy the moments when I feel a bit better. Not sure how things will be financially - but hopefully will cope.

Thanks for you reply. Best wishes to you.

[PMRpro Ambassador in reply to lesley2015]

Everyone does think they can "beat it" - but rest is good medicine for GCA and PMR.

Hope it all works out OK.

[lesley2015]

Thanks again - not feeling so good today so will take things definitely slower -,best wishes to you also !