I think I might need a little help ...

[LemonZest11]

About 8 weeks ago I achieved 5mg pred with no relapse on my tapering journey since December 2018. I then proceeded to 4mgs, unaware at the time that tapers should not be more than 10%. I began to feel some old familiar niggles and rheumy told me to go back to 5mg. I did for a couple of days and then down to 4.5mg, and started DorsetLady’s taper plan. The old niggles persisted so went back to 5 for a few days ... no improvement so two days ago I went up to 7mg. Very little improvement and I am wondering if I need to leave it longer, or increase to maybe 10mg? Pain/weakness is mainly in shoulders/upper arms with weakness in thighs, but no real pain there. Advice from the gurus please?

[DorsetLady PMRGCAuk volunteer]

Might be worth trying 10mg - you should notice a difference at that. Stay there for 5-6 days, then provided things have settled you should be able to drop back down to say 6mg, maybe 5mg without a problem.

If that seems okay, stay at that level for at least a month, then try 0.5mg reductions.

But I would say -

a. you have got to 5mg quickly, and

b. you are in adrenal problem territory- so definitely slow down!

Good luck.

[LemonZest11 in reply to DorsetLady]

Thank you once again DorsetLady. Will definitely follow your advice. What is adrenal problem territory?

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

Quick explanation-

Once you have been on steroids for more than 3 weeks and at a dose higher than 7.5mg (which is equivalent to the normal cortisol production by your Adrenals- called the physiological level) they temporary stop working because the artificial cortisol in your body (Pred) means they don’t have to.

That means in a stressful situation where they would normally go into overdrive to help your body they don’t - that extra boost has already been superseded by the constant level the Pred gives (hope that makes sense) So you don’t get that extra burst of energy to help you out of a dangerous (stressful) situation - the fight or flight phenomena!

You must tell medical people you are on steroids so they don’t suddenly stop them - that could cause a steroid insufficiency problem and your body would really struggle.

When we get low levels (around 7.5mg) we need to reduce very slowly to nudge the adrenals into working again.

For the majority of people they do start working again - although it’s not like switching a light on - one day they’re asleep next day they’re awake! It takes a little while to recover all function. But there is a test (Synacthen test) to check if they are capable of working - not if they actually, just if they are capable of functioning.

Hope not too much information!

[LemonZest11 in reply to DorsetLady]

Thanks, yes, makes sense and I think I read about this, hence my reluctance to go back above 7mg. But I will!

[Hidden in reply to LemonZest11]

Never be reluctant to increase if you have the good sense to know when you are struggling. In the long run the quicker you stamp out a flare the better it is. You don't want to leave it so the inflammation starts to win over the pred. What's the point of 5 or 6mg if it's not enough to do the job. A few days at 10mg and then just a 1mg increase from problem dose may mean you take less pred in the long run. The PMR is active still. It needs the pred it needs to control it. It's not a "choice" to increase, its a necessity.

[LemonZest11 in reply to Hidden]

I’m not talking about “choice”, as you say. I am merely seeking advice. We don’t all have that “good sense” because we don’t know. It is a learning journey for us who are newly struggling, and that is why we seek help. So please go easy on us, as most of you do. I am so grateful for the wisdom offered, and the kindness, especially when it is given with a gentle tone. I know that the help here comes from people of experience and that is why you are so much more valuable and loved and appreciated than the voice of our doctors. Thanks again, I’ll begin again tomorrow. Xx

[Hidden in reply to LemonZest11]

I meant you already have the good sense. It wasn't intended to be a harsh reply at all so sorry if it came across that way. I meant once you realise you need more/have symptoms returning that's the choice/decision made. The fact that you posted means you are learning how to recognise your limits. Hence, increasing becomes a necessity....you can grow your confidence in the knowledge that you are learning how to manage PMR.. Again apologies if it came across differently.

[Hidden in reply to LemonZest11]

I am in my fourth year and it took me a couple of....let's say days... (weeks) to realise I was flaring and needed more pred. So I am not in a position to criticise if I wanted to. 😱

[LemonZest11 in reply to Hidden]

Thanks, perhaps I’m a bit fragile at the moment. I really appreciate your advice, wisdom and kindness. Today I go to 10mg!! Let’s see how the PMR likes that!!

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

Good, as Poopadoop says - you need what you need!

[LemonZest11 in reply to DorsetLady]

Well it’s now 6.30pm in Western Australia and I took 10mg this morning at around 6am (as soon as I could). I’m feeling better already. Bit of stiffness in shoulders and neck but no pain as such. I’m going to follow DorsetLady’s advice and stay on 10mg for another few days, see if get back to symptom free, and then go down to 6mg, as suggested. Thanks ladies, good to know you’re here.

[PMRpro Ambassador]

I totally agree with everything that has been said so far!!!

Slow down! You go too fast!