Curious about good spell

[Ann1A]

Hello knowledgeable people, I am really curious about one aspect of my PMR , which I have had for 3 years, and am managing with advice from this site and Prednisalone. For context, I have over time halved my original 20 mg dose through slow tapering, .5 reductions and several increases to manage bad reactions below 11mg.

At 10.5 my reduction symptoms changed from those I believe to be of steroid withdrawal to what I think are those of slow adrenals... the prevailing problem changed from a few days weakness and pain to a few weeks of overwhelming fatigue and life-numbing lethargy, with some irritability. Currently I am in that position and prepared to stick with it and nudge my adrenals some more.

But what I am curious about is this, I have noticed that every day, around 7pm, I feel as if a switch is thrown and I become mentally myself again and life returns. It is literally like magic. I go from lying down with zero interest in anything to sitting up and thinking clearly. Every day, early evening, whoosh ! WHY ? Knowing won't change much I guess, but it might indicate something helpful? surely it must be chemical / body clock somehow ?

I take my steroids around 6.45 am, and actually feel pretty normal till about 8.30/9.00 am, at which point the fatigue envelops me and I'm done for the day. Till the magic happens.

Does anyone else experience a similar, regular good spell ... and please, can anyone explain WHY ?!

[PMRpro Ambassador]

Have you tried taking the pred in the evening? To me that sounds very like a reaction to the pred, similar to what several people have reported in the past. It strikes when the pred is at its peak and is waning when the pred level has fallen to a low level. A few have switched to taking pred in the evening so they sleep through it. Not ideal at lower doses but still preferable to not functioning!!!

[Ann1A in reply to PMRpro]

Are you thinking the lethargy and fatigue are reaction to Pred... I'm not sure they are, because it only happens when I reduce, and if I see that through, although it takes a few weeks, I regain normality, or at least, completely lose the fatigue.

[DorsetLady PMRGCAuk volunteer in reply to Ann1A]

In that case, it could be steroid withdrawal, albeit longer than most suffer- so maybe try a slower tapering plan -

healthunlocked.com/pmrgcauk...

But that’s not quite what you implied in original question - sounded as if it was all the time. Still a bit high to be adrenals - not impossible but unlikely - but a slower taper will help them as well.. if it is

[Ann1A in reply to DorsetLady]

Thankyou, yes I am already doing slow tapering, so maybe I should stretch it further, go ultra slow ? I am fine when not tapering, no lethargy, no fatigue.And anything over 11 mg I am also fine, several times I've hit 10.5 and been so fatigued that, after a few weeks I've given up and done the classic 'plus 5mg for a week to mop up problem, then reduce to last dose at which comfortable, try again later' and I was fine till nce again back to under 11mg.

At one point it was suggested here that it might possibly be my adrenals, although at extreme end ofcrange, and if so, then the plus5mg plan was not helpful, in fact was the opposite, and that I should try to get through it, which I successfully then persevered longer and did.

The fatigue only hit again , and hard, when my slowly tapering had brought me to 1day new dose, 4 days old dose, and it was then the magic hour in the evening was again noticable, reminding me I had been curious about it before.

[DorsetLady PMRGCAuk volunteer in reply to Ann1A]

Sounds as if you are very sensitive to even smallest change in dose, so good idea to slow the tapering process even more -certainly for the time being. Just repeat each stage. Hopefully in time the effects will ease…

[Ann1A in reply to DorsetLady]

Thankyou, I will do that, your help is appreciated as always.

[PMRpro Ambassador in reply to Ann1A]

I have nothing to add to DL's comment - and I agree with her, that wasn't what it sounded like. Some people really do struggle with a change in dose as it means patience ...

[Ann1A in reply to PMRpro]

Thankyou, I will hang in there.... your help is appreciated as always.

[Ann1A in reply to DorsetLady]

Im so sorry if i wasnt clear, they are reduction symptoms, but once started ( always after i reduce and that reduction is .5mg, on a slow taper of 1 day new dose 6 days old, 1 day new 5 days old pattern ) can go on for several weeks, feels like forever.

In the past 16 months i have got to 11mg and given up 3 times and done the 'plus5mg then back to last comfortable dose' recovery plan, but on the 4th occasion, after being advised here that this might make a slow adrenal reaction more likely, i persevered and after about 6 weeks regained normality, or, at least normal for Norfolk /PMR.

i then stayed at the new lower dose, 10.5, for about 4 weeks, as i had an upcoming visitor from the states, and i was to be their driver ( thats how well i am in between reductions) and then at the start of June began reducing again. initially i had familiar steroid withdrawal symptoms, but once i got to the '1 day low dose 4 days old dose' stage, the fatigue hit like a wall. A couple of times around week 3 Ive gone back to the week1 pattern, and felt better, then continued as per slow taper ... so now i am wondering should i return to Go and start again in order to recover, ie back to week 1, then repeat each week as i step down, ie 2x week 1, 2x week 2, 2x week 3 etc,

or

should i stay here a while (1 day new, 3 days old ) and recover, then repeat from this point ?

i feel so wiped out, upset and shaky after typing and focussing on all this, and such a failure. i originally built up the courage to post just hoping the magic hour in the evening was in some way significant, might mean something, thought i was ok just persevering with the slow taper.

[PMRpro Ambassador in reply to Ann1A]

Have you ever tried just 1/4mg (or even more) and all at once, not using a slow taper? The idea of the slow tapers is to lead to odd days of being bashed with more normal days between But that appears not to be happening - might it be better to have the awfullness all at once?

[Ann1A in reply to PMRpro]

I did try doing whole .5 all at once, no taper, about a 16 months ago, before the fatigue was first bad. Everything was fine, reducing without a taper just gave me a few 'off' days with some increased pain, no fatigue, till I tried getting below 11mg, that's when the weeks of fatigue started, after that I tried slow tapering and the gp sent me to the Rhemy, who gave methotrexate but the fatigue still hits. It gets into my head too, I am irritable as hell, and tearful. I even shout at the poor dog sometimes.

[PMRpro Ambassador in reply to Ann1A]

Methotrexate felled me withi a couple of week - one foot in front of another was a major effort. I'm not surprised you are irritable - I wasn't all sweetness and light either and I wasn't as bad you appear to be.

Maybe this is a feature of Norfolk PMR - Longtimer has struggled too! Now me - I'd accept 11mg if that is what I need to feel human. The only thing that has done it for me is Actemra. I can't return to the UK ...

[DorsetLady PMRGCAuk volunteer in reply to Ann1A]

Oh dear you are struggling aren’t you.,

You could try your second option - but I think I might be inclined to go back to previous dose -really give yourself time to settle -then try the 2 weeks at each stage plan.

You are not a failure-please don’t think that -you are just one of those unlucky people that really struggle.

Do you have a rheumy overseeing your PMR ?

Wonder if any chance of seeing Max Yates at Norwich -he’s seems to have good feedback

[Ann1A in reply to DorsetLady]

Thanks so much, I'll do that, back to previous dose, 10.5, settle, then try again but doing two weeks at each stage. I do have a Rheumy who put me on methotrexate about a year ago, from which I cannot see the slightest scrap of effect, other than negative on hair, eyelashes and brows. I have asked to stop but she says I don't know how much worse I would be without it.

[DorsetLady PMRGCAuk volunteer in reply to Ann1A]

Doesn’t sound as if MTX is helping much …but it’s difficult to prove it’s not doing something unless you stop it.,, Rheumy might be correct, but she might not!

[SnazzyD]

Could be sensitivity to reducing in terms of constitutional reaction as has been said. I was sensitive to every single drop all the way down from 40mg to 1mg. My nadir was at 4-5pm and come 6pm that magic switch. Interestingly, now I’m off Pred and when I’m ill or below par, 5pm will be my worst time of the day. Also, after taking Pred and around the peak blood stream level, I used to get fatigue for a few hours. It might be your body is reacting to the lack at the 2 hour supposed peak that doesn’t come. Who knows? Keep taking notes.

[Ann1A in reply to SnazzyD]

Interesting, thankyou

[goldstone183]

you need to ask your GP to arrange a 9am cortisol test. It's possible that your adrenals may not be working very well any more. I had this test after many years of chronic predniolone use and it's been established that my adrenals have packed up. This means that I will need to take pred or equivalent for life. It also has huge implications when ill or having surgery etc

[Ann1A in reply to goldstone183]

Thankyou, that test would be helpful, I had a feeling that it wasn't available above 7mg, because thats the 'normal' threshold dose, but it would be worth trying. I am sorry to hear your adrenals have packed up, and for the condition causing the need for Pred in the first place.

[PMRpro Ambassador in reply to Ann1A]

A synacthen test won't show anything useful until you are well under 5mg - some people had the test at 3mg and it showed no or poor adrenal function but at 1,5mg it was much improved. Most endocrinologists won't approve it until the patient is below 5mg as it really is a waste of resources. A basal cortisol will tell you most of what you want to know without any difficulty getting it done, your GP can request it - that is cortisol on a sample taken between 9am and lunchtime not having take pred in the previous 24 hours (that is important).

[HeronNS]

Two things. One way to taper more slowly is to do each step at least twice. Say you are at one day new dose, four days old dose, and you find the problem beginning to recur, go back and do one day new dose, five days old dose at least one more time, or whatever was the last dose which caused no problem. After eight years I hardly even count my days any more but go by how I feel, although always with the pattern of slow taper in mind. It might take you three months to reduce by .5 mg, but that's heading in the right direction.

Second thing, fwiw, I recently had a stressful dental appointment coming up and for some reason was terribly shaky all that day, until around 4 in the afternoon the shakiness went away and I seemed okay. Until then I'd been thinking of taking some extra pred (and indeed I did take slightly more for the next appointment). However, the next morning after that odd day I discovered I had either taken too little or no pred the day before! My assumption is that there is a second, smaller, flood of natural cortisol in the late afternoon (the first is about twelve hours earlier in the morning, before we wake up) and my body actually did pump out some cortisol at that time. I need to add that my dose has been well below 5 for a long time, so this is not unexpected. But rather than being a bit discouraged by your apparent adrenal laziness, your late in the day recovery from feeling exhausted may be a hopeful sign.

[Ann1A in reply to HeronNS]

Thank you so much, that is a very heartening possibility, I kept thinking that the magic recovery time might mean something was working, somewhere, this is why I enquired of the community !

[HeronNS in reply to Ann1A]

Certainly your experience, and the comments by others in the thread, emphasize how we are all different .And if pred drives Twopies crazy, I expect our idiosyncratic response to pred drives many a doctor crazy!

[Twopies in reply to HeronNS]

how interesting. “Do each step at least twice.” I am SO sensitive to meds and supplements and foods that almost everything sets me off. (I ended up in ER at 20 mg pred, doc said pred drives some people crazy, yep.). I hope I remember your advice to repeat each step twice, certainly worth a try, thanks.

[Gimme in reply to Twopies]

ha yes, I know that feeling, anything over 10 mg pred makes me feel like I am losing my mind. Right at the start when I was on 15 mg, it really did make me crazy. I was bouncing off the walls. I just can't tolerate it.

[Ridge]

Have you thought about your meals? I find that when and what I eat seems to have a noticeable affect. Breakfast? Lunch? Waves of unexplainable fatigue until I made the connection.

[Ann1A in reply to Ridge]

thankyuo, no i havent considered meals, i suppose because normally they dont change and i am only have the fatigue on reduction, i just linked it to the dose or adrenals. but i will look into it, thanks

[Ridge in reply to Ann1A]

Perhaps it is possible that the energy needed to digest certain foods would be noticeable when struggling with boarder line ai? Is 7pm before your evening meal? I did ask my GP about fatigue especially after meals. He said stay clear of carbs. Difficult to do that. It doesn’t seem to matter what I eat in the evening but that could be because no energy is needed then. All a puzzlement!

[Ann1A in reply to Ridge]

I pretty much avoid carbs, at least from wheat and potatoes, I'm a vegetarian and most lunches are a vegetable soup with pearl barley and lentils, plus some carrots, so there are some carbs there, but also protein. Evening meal is usually early, mostly salads and fruits, sometime eggs and avocados. Even at a limited diet I only just maintain weight, when I indulge in more than a very occasional luxury cheese sandwich I pile it back on.

[PMRpro Ambassador in reply to Ann1A]

"when I indulge in more than a very occasional luxury cheese sandwich I pile it back on"

That suggest to me that it could be fluid retention - salt and carbs will cause that.

[Ann1A in reply to PMRpro]

Oh god, that's my last guilty pleasure gone then, and it's only once a month

[PMRpro Ambassador in reply to Ann1A]

Doesn't the weight go quickly after? I retain fluid if I eat out more than once - I don't use salt at home except what is in the herbs grinder I use for salad (and everything else!) but it is gone after a couple of days. But it rather puts a damper on staying away from home in a hotel!!!!

[Ann1A in reply to PMRpro]

No, it doesnt go, I'm now a good 2 dress sizes over pre Pred... it's the classic face and neck, front of body, stays pretty stable but if I have treat foods, like cheese, it quickly goes up. But I don't think I was aware of salt being a problem where weight was concerned ? I do like to use it quite liberally on eggs, and if I ever have a commercial soup.

[PMRpro Ambassador in reply to Ann1A]

And a commercial soup has a load of salt anyway.

[Miacaro45]

I love this website because I learn so much. I am on 11 1/2 mg of Prednisone. I have tapered very slowly from 80 mg in October, 2020 to now. What I have noticed is that I feel awful ( pain, extreme exhaustion, etc)for a good part of the day and like a switch ( around 3:30 pm) I feel “ normal”. This lasts for about 3-4 hours. I take the Prednisone any where from 3:30 am to 4:30 am. I get a solid 4-5 hours of sleep.

[Ann1A in reply to Miacaro45]

ah the same magic switch !! mine is 3 hours later in the day, but i take my pred 3 hours later too !

Like you I was only getting 3 to 4 hours sleep, since being on pred, but i found at 10.5 that changed , and now i sleep around 6 hours.

[PMR2011]

Isn’t the principle of adding 5mg to mop up the inflammation from a flare? If it is adrenals causing the fatigue (and not a flare) then adding the 5 might actually confuse things more and cause adrenals to take longer to wake. Would it be better to simply go back to the last comfortable dose and ride it out?

[Ann1A in reply to PMR2011]

Yes that thought about the adrenals, and plus5mg doing more harm than good, was pretty much the advice I got a while ago when I asked for advice here, and that's why last time I had the really bad fatigue I persevered, it took about 6 weeks to clear but in the end it worked. I was prepared to do that again, but with the fatigue came the magic time in the evening and i wondered if it was in any way helpfully indicative of anything.

[PMR2011]

yes, hopefully it’s an “awakening” of the adrenals. Riding the wave…!

[micpenn222]

I'm having the same issue as you. I am down to 3.5 mgs, but it started around 8 mgs where the fatigue and depressed mood would hit a couple of hours or less after I take the dose in the morning... then by evening it slowly lifts and I get myself back, only to repeat the cycle the next day. I can't help but think that it has something to do with the reaction to the prednisone itself, as it begs the question why is it that I feel best when the prednisone is supposedly wearing off, and the worst when it's at it's peak? It would be the same thing if it were adrenal insufficiency as considering that at the time their function is at the lowest is the time I feel the best. Then again it could be prolonged withdrawals from lower doses, but I can't help but wonder if it's not the body rebelling against the artificial cortisol.

[Ann1A in reply to micpenn222]

Thanks for replying, without wanting to sound pleased that you have problems too i find it helpful to know others have the same pattern, which must mean something, if only we could unpick it. I follow your reasoning perfectly.

[Body_bonkers]

My bladder goes beserk couple of hours after taking dose for about 6-8 hours but wish my brain would kick in some time soon

[Ann1A in reply to Body_bonkers]

I totally understand, and it's so hard to explain to other people