Back down to 7mg…..again, but…..!?

[AgMuirhead]

Hello lovely and kind people. I need a little bit of advice/guidance, please.

I’ve reduced, for the 3rd time, to 7mg (been there for a week) after being on 7.5 for six weeks. I have a stiff neck and some shoulder discomfort, as well as some (manageable) groin pain when I wake, all of which (more or less) goes away 2 hours after I’ve taken the Pred. (The same pains were present on 7.5 mg). My question is: would it be beneficial if I took 1 or 2 mg at bedtime then 5mg in the morning. I’m trying to avoid a big jump in dose again.

Also, another (new) issue is that for the past 5/6 weeks, I’ve been experiencing mild aches, heaviness and tightness in my calf muscles (both legs) when walking outside of the house. The Pred does nothing to alleviate this. I am wondering if this is one of the symptoms of adrenals trying to waken up?

Many thank, in advance.

[PMRpro Ambassador]

My first thought is that you have reached your goal: the lowest effective dose and it is probably 7.5mg. You aren't heading relentlessly to zero but the minimum dose that you need at any given time. When you flare repeatedly at the same sort of level - that is your body telling you that you have found it. 7mg is too low - if you were fine at 7.5mg for 6 weeks you may get away with that rather than 8mg.

Use our flare protocol: add 5mg for a week (so take 12,5mg for 7 days) and then drop straight back to 7.5mg and stay there for a few months before trying 1/2mg again. If 7.5mg isn't quite enough - 8mg is what you need.

[AgMuirhead in reply to PMRpro]

Thank you PMRpro! I’ll heed that advice.

[piglette]

With me it did seem there were new pains from the adrenals starting to complain around that dose. I also had hip problems with awful pain in the groin.

[AgMuirhead in reply to piglette]

Thank you. It’s all a bit of a minefield is it not!

[Sungolfer in reply to piglette]

Hi Piglette that’s so interesting and actually reassuring! I’ve managed to get to a slow taper to this week 6mg 5 days 5 mg 2 and the last 6 week taper was gradual 7 to 6 mg. I have had intermittent groin pain which is mostly ok and then catches me - ouch - for the last few weeks. I’ve put it down to my golf and maybe bursitis or the beginning of a hip problem - please no. So you think it may be due to my adrenals and reduction? In other respects the tapering seems to be quite good - do feel my thighs are more heavy and achey walking up inclines too? Thanks x

[PMRpro Ambassador in reply to Sungolfer]

Hip bursitis and sore quads often appear when you are on the borderline of enough pred to manage PMR.

[Sungolfer in reply to PMRpro]

Thank you - so maybe slow my taper down a little?

[PMRpro Ambassador in reply to Sungolfer]

We'd always say slow down!!!!!!

[DorsetLady PMRGCAuk volunteer in reply to Sungolfer]

Definitely…

[Whippetygirl in reply to PMRpro]

I had Trochantric Bursities in my left hip and groin a few weeks ago the pain was awful could not get in or out of bed, GP put me on Naproxen for two weeks which cleared it up. I have the same problem with the muscles in my legs which I have put down to muscle wastage but I still walk round my patio 80 steps x 10 laps twice a day and the odd walk round the block with my dog. I can’t give in to it .

[PMRpro Ambassador in reply to Whippetygirl]

I get extracorporeal shockwave therapy for trochanteric bursitis - fantastic and no adverse effects.

[Whippetygirl in reply to PMRpro]

I have never heard of it.x

[PMRpro Ambassador in reply to Whippetygirl]

Try googling it - it is available in the UK and some NHS trusts have it. It is based on the same technology as the lithotripsy used to break down gall and kidney stones but it has been adapted for soft tissue. It isn't really painful - but very noisy!!

[Whippetygirl in reply to PMRpro]

Thank you.

[Pr0jection]

I've been on 7.5mg for 4 years and feel well most of the time. However, I'm in no hurry to come off prednisolone or even reduce further because I can feel PMR is still lurking (my sit bone pain has returned during the last few days which was the initial problem). As I've become older (81) I'm no doubt experiencing other 'old age' issues as well. Having an active life, for however long I have left, is the key for me. I do not want to become bedridden again (I had 4 months of that before diagnosis).

[AgMuirhead in reply to Pr0jection]

Thank you, PrOjection. When I next get down to 7.5/8 mg, I’ll stick there for a while.