Slow drop 6.5 to 6mg and got through fatigue. Great for 2 weeks but now stiffness.

[Ebiker]

About 6 weeks ago had conversation with some of you about taking pred at night. It was fine. I had started a very slow drop 6.5mg to 6mg mid October. Through Nov went through the awful fatigue, zombied head etc. Last old dose was on 23rd Nov.Great improvement gradually for a couple of weeks, ess fatigue and feeling pretty good most days...yay! The body was certainly catching up.Now really concerned however as I have experienced some stiffness in thighs and groin as well as something in the knee where the pmr originally surfaced. I put this down to a normal happening when one uses muscles again. I do not have any pain or other discomfort.

Hoping it is not the beginnings of a flare.

Any advice please.

[PMRpro Ambassador]

Keep a close eye on it and see if it worsens. If it does, it possibly IS a flare. If it is stable then it may just be poor adrenal function adjusting.

But do I hear you saying you have been USING muscles? Maybe you have overdone it.

[Ebiker in reply to PMRpro]

Thanks PMRpro. I have not been using muscles more than usual really. In fact I am walking less and only using muscles sweeping up leaves and doing easy garden tasks.It could be getting a bit worse each day. We'll see. Yet last week I felt that the adrenals were waking up. If it worsens then should I go up for a few days and drop back to 6.5mg? Will this wipe out the progress made in encouraging the adrenals? I hate the thought after the last 8 weeks struggling with fatigue but if it has to be then it has to be.

Thanks again.

[PMRpro Ambassador in reply to Ebiker]

"only using muscles sweeping up leaves and doing easy garden tasks"

Hmm - repetitive muscle actions are poison to PMR,

The idea of the adding 5mg pulse of pred and dropping quickly back to the previous level is to avoid adrenal effects, it doesn't happen overnight, it takes a few weeks.

[Ebiker in reply to PMRpro]

Started reply and lost it!Sadly the stiffness worsened and yesterday I started feeling what I call old 'war wounds'....pain in upper arm (old torn ligament), foot (previous plantar fasciitis) hip ( dexa scan earlier this week showed now verging on osteoporosis).

I take my pred before bed so took an extra 5mg. That was a bit of a knee jerk reaction possibly.

Given that I weathered the awful fatigue when dropping to 6mg and seemed to be fine on it for 2 to 3 weeks I guess the adrenals are starting to waken up. Am I right?

Question is can I go up say 3mg for a few days and then drop to the 6.5mg without sending them back to sleep?

Sorry for rambling but I need your thoughts as I am struggling to know what is best.

Thanks in advance.

[PMRpro Ambassador in reply to Ebiker]

No - go up 5mg (FIVE) until the symptoms have settled and then go straight back to the dose you were good at. You have 10-14 days to be able to do that. That is the standard advice for dealing with a flare which is mentioned on the forum AT LEAST twice a week, really surprised you haven't seen it before, Full details are to be found in FAQs I think.

The adrenal function is immaterial - the reason you take pred is to manage the PMR first and foremost. The adrenals don't switch on like a light switch, it is more like a dimmer switch that gets stuck now and again. As you lower the pred dose in small steps, they should start to top up that dose to what the body needs. But it takes months. You take care of the PMR - as long as that is managed, the adrenals will catch up if you go slowly enough. Endocrinologists consider that 2-3mg pred is plenty for the body to function. Not sure I'd agree and the fatigue often starts far sooner but it pays to avoid overdoing anything,

[Ebiker in reply to PMRpro]

Thanks for speedy reply. Yes, I have read it all before and the links. I guess I was worried that a high hike up might undo the good done so far.I will follow the guide lines then stay on 6.5mg for a while. Hey ho on we go.

[PMRpro Ambassador in reply to Ebiker]

Not when the increase is only for a couple of weeks max. What WILL undo the good so far is NOT getting the flare under proper control which could end up with the PMR needing a permanent hike in the dose.

[Ebiker in reply to PMRpro]

Thanks so much for the detail in explanation. It all helps to understand this health issue. At some point I will need to make the slow drop again to 6mg but from what I read on here our 'cold dark damp' winters in NW England are not the best time to attempt it.I would much prefer the drier cold of the Dolomites.

At least Christmas here will be quiet, with good company in a lovely heated home with no stress.

I hope you have a lovely festive season.

[PMRpro Ambassador in reply to Ebiker]

Not very dry today!!! Could even be raining out there, couple of inches of snow overnight.

[Ebiker in reply to PMRpro]

Morning PMRpro. Still working on getting this stiffness sorted. Had 7 days on 5+mg and improvement 'inasmuch' as not stiff in morning but appears early evening. It does not seem to be lessening. The stiffness is only in my thighs now.As I was taking my pred at 10pm I thought it might be better to split the dose so last night I took 6mg only and then 6mg this morning. I was taking 11mg but as I had added 5mg to where I flared ie at 6mg and was ok at 6.5mg I should probably have upped to 11.5mg??

I would appreciate your thoughts. Many thanks.

[Ebiker in reply to Ebiker]

When I say 'does not seem to be lessening' I am referring to the thigh stiffness as the other niggly bits seem to have sorted.

[PMRpro Ambassador in reply to Ebiker]

I really don't know - I suppose you need to find out if there is a dose/timing where you have no stiffness. Not everyone gets 100% relief at any dose so that is an important baseline. But we do say - 1/2mg can make a big difference and so can a day or two.

[Ebiker in reply to PMRpro]

Thanks. We'll see what the next couple of dsys brings.