The Lighter Side: Ohhh.. The PMR / Pred Tapering Paradox. More or Less - When, Why, and How. Answers on a Postcard Please..? ;-)

[markbenjamin57]

Greetings to all Polymylingerers and GCA Survivors worldwide.

As usual (for me!), quite a long Post: but I hope it stimulates some interest and discussion around the often mysterious and combined Art / Science of PMR and Pred tapering- and also the contradictions associated with it.

As you might know, I'm a Male PMR Veteran (3+ years since Dx), previously very fit and active for my age (now 61) but having slowed-down considerably with PMR. Oh well, it could be worse. At least I'm still On the Ride..

Here's my Dilemma:

A few of You Lot might have followed my (mainly silly) Posts here - but also the more serious ones in which I've talked about the Paradoxes / Contradictions experienced on my PMR / Pred Journey. By this, I mean:

Like many of you here, I was 'stuck' at a level of Preds (e.g.10mgpd) for several months last year with Zero relief from the typical PMR symptoms (i.e. daily Pain, Stiffness & Deathly Fatigue) - despite diligently following the DSNS tapering method (or its equivalents) and hoping for some breakthrough. As I write this, I know that a few of you will relate...

By contrast...

A couple of times when having defiantly ignored the usual Best Advice re. Pred tapering (sorry PMR Aunties) I've thought 'S*d It, I'll take a Leap of Faith' and reduced the daily Pred dosage by far more than is recommended on a Gut Feeling that the side-effects of Preds might out-weigh the relatively minor (for me) PMR symptoms. This has usually worked well, and some of you might remember my adventurous cliff-edge leap from 2/3 mgpd to Pred Club Zero a few months ago (Note: Do Not Try this at Home!). I was ok, and no worse symptoms-wise for many weeks. In fact, I felt much better off-of the Preds during that time.

But the Plot Thickens..

After a quite strenuous (but enjoyable / positive) period of physical and mental 'load' for a couple of months, I've cautiously returned from Pred Club Zero and 're-plateaued' at 2-3 mgpd Pred as a precautionary measure in the meantime. But, yesterday (again, maybe rather adventurously), I decided to miss just ONE daily dose (3mg) and try the same strategy as before - and with the same rationale (i.e. Less Pred might be better than More in terms of side-effects vs. PMR symptoms).

Result?

The next day: 12 hours of Extreme Dizziness (not even confident to drive the Limo safely - unheard of for me), Nausea, Spaced-out-ness and more Mental / Physical Fatigue than normal. A bit like 10 alcohol-induced Hangovers all at once - but without having imbibed in any more than the usual, moderate intake of the Red Stuff or done anything different in terms of my usual lifestyle - honest!

So: it was back to 3mg Preds today (I'm not too proud to admit it in good company).

Here's the Ultimate Paradox (?):

24 hours later (i.e. today), I'm suddenly and miraculously feeling MUCH more energised and relaxed mentally and physically than for some time - in fact for as long as I can remember - and, despite feeling truly and exceptionally Deathly for 12 hours yesterday. Minimal PMR pain and stiffness, no DF (Deathly Fatigue), and feeling Great. Yes, Great - like the difference between Night and Day. Hoorahhh - but confusing at the same time?! ;-/

So, here's the 64-Thousand Dollar Question:

As a certain US President would say: What the ****'s going on here?!

Answers on a postcard please?

Best wishes - and try to keep smiling on the often unpredictable and confusing PMR / GCA Journey

'Uncle' MB

[HeronNS]

Hi MB57. Sounds to me like you were having a day where your body couldn't make enough cortisol. I'm sorry you felt so rotten but the miraculous result of the cortisol top up from your small pred dose is encouraging. You have, I believe, heard of the Dead Slow Nearly Stop tapering plan? No doubt it helps to prop up laggard adrenal glands. And I think pred has just given you an unpleasant reminder how powerful a substance it is, and will not be trifled with.

Cheers!

[markbenjamin57 in reply to HeronNS]

Thanks Heron That makes sense, and maybe I was pushing things a little this time. Oh well..! Yep, I know about DSNS but probably fell into the trap of thinking that at such a low level of Pred I could get away with it having done so before. Lesson to Self: respect the Preds!

[Nitrobunny]

Yep I agree with HeronNS, it goes like something like this..."Ummm Helloooooo Mr. Mark Benjamin, your adrenals here with a friendly little reminder that WE OWN YOU!!!! That's right, without our cooperation and production of cortisol we will make you feel lower than a snakes butt!!!"

When GCA slammed me into the hospital in early 2016 (twice) I was on huge doses of IV steroids and sent home with 100mg of prednisone a day, dropped to 80 a month later and started the slow taper from there. I'm at 5 now and occasionally my adrenals let me know they are not happy to be carrying their weight again. "Oh it's cute that you want us to start producing cortisol again. We'll get back to you on that!" It's definitely a hormone level thing but I'm doing pretty well only occasionally having a day where I'm absolutely out of it and worthless, only to wake up and feel just amazing the next day. Firing on all eight and raring to go. My recent labs from last week show my ESR at 24 and CRP at 2.4 not too terribly bad so that combined with how I'm feeling leads me to believe I'm making fair progress. I have fatigue on a daily basis but it's not insurmountable. The regular morning stiffness is usually gone by the time I finish my coffee so again, I believe I'm doing well. It sounds like you are doing well too! Keep up the good work!

Best~

[markbenjamin57 in reply to Nitrobunny]

Thanks Nitrobunny :-). But this time, Adrenals: 1, MB: 0 ?

I agree with you about going with how you feel - it's the bigger picture that counts. Sounds like you're doing well too - especially after GCA. Fingers crossed...

Best wishes

MB

[karools16 in reply to Nitrobunny]

Wow! you have done well! From 100 to 5 mg Pred in a short time. you are to be congratulated. May it continue.

[Nitrobunny in reply to karools16]

It was actually longer, I noticed a typo. It was 2016 so it’s been two and a half years 😊. Sorry about that!

[karools16 in reply to Nitrobunny]

Still good.

[Nitrobunny in reply to karools16]

Thank you very much! 😊

[allykat]

Hi Mark, I am pleased you are back to an even keel. Going from 3 mg to zero is (and you know this) an enormous drop. No wonder your body launched a protest. I wonder what would have happened if you had toughed it out for another 24 hours or perhaps only taken 1 mg or 2 mg. Just a thought!

[markbenjamin57 in reply to allykat]

Hi Kath, thanks :-). Yep, I know I know I know... lesson learned!

[whisperit]

Hello MB

I suspect most people on pred for any length of time experience inexplicable reactions. My pattern seems paradoxical; after a cut, I tend to have 2 or 3 very good days, followed by a horrible slump. Curiously, after a small rise in dose, the same pattern occurs. Earlier this year, I found that I have secondary adrenal insufficiency, which means that my adrenals do secrete some cortisol, but are very blunted.

One possibility might be that after detecting a cut, the HPA axis temporarily may go into 'emergency response' mode and squeezes out an extra dollop of natural cortisol, but cannot sustain this effort for more than a day or two. Conversely, when it detects a rise in pred, it switches off what little it is producing naturally, so the felt benefit is minimised.

This is all guesswork, which neither my rheumy nor endo are terribly interested in speculating about. But I do think that for those of us whose quality of life is hugely affected by these problems long term, deserve much more active and detailed investigations (eg like cortisol day curves). Even if it makes little difference to condition management overall, the difference it might make to daily life could be really significant.

[markbenjamin57 in reply to whisperit]

Greetings whisperit

Thanks for your input - that makes a lot of sense and it's interesting to know about your experience too. 'Slump' describes it well! My Rheumy recently dismissed the idea of Adrenal Insufficiency as I'm surviving at low levels of Pred (for the past 6 months, typically between 3 and sometimes zero). And... all my blood test results are 'normal'.

But I agree - some more detailed investigations would help in terms of knowing what to expect for the future. I think the uncertainty created by the heterogeneity of this type of illness doesn't help with Stress levels...

[PMRpro Ambassador in reply to markbenjamin57]

Karools (I think) was at 2mg and feeling fine. A synacthen test showed her adrenal function was next to zero. Cue panicked letter from endo!!

[markbenjamin57 in reply to PMRpro]

Mmmm... interesting. Maybe I should push for one even if I have to go privately?

[PMRpro Ambassador in reply to markbenjamin57]

jinasc saw an endo about hers (it was fine) but the endo did say we should all be checked at low doses. Adrenal insufficiency can take a long time to appear - doesn't have to be a crisis.

[tgca in reply to PMRpro]

How low is low for a check?

[PMRpro Ambassador in reply to tgca]

There isn't a lot of point before about 5mg pred. Unless you are experiencing increasing deathly fatigue or other Addison's symptoms before them. Listen to whisperit's story.

[markbenjamin57 in reply to PMRpro]

Interesting, thanks PMRpro...

[whisperit in reply to markbenjamin57]

I struggling on with 4mg for 10 months and was assured by my rheumy that my extreme, constant, fatigue could not possibly be due to adrenal insufficiency as I hadn't been on steroids for long enough to suppress them. Instead, he diagnosed (painless) fibromyalgia. It was only after I did a home saliva cortisol test (cost about £70) that showed almost zero cortisol on waking that I was seen by an endo and got a synacthen test.

I should stress that although my rheumy accepts the result of the synacthen test, he still does not believe that my fatigue is mainly the result of adrenal insufficiency. And who knows? - he may be right! It's very hard to untangle all these disorders plus the effects of the meds we are on

[markbenjamin57 in reply to whisperit]

Thanks whisperit. I didn't know about about the home test and neither my GP nor Rheumy ever mentioned it (surprise surprise..?).

As for what causes the DF (Deathly Fatigue), this seems to be the 64 thousand dollar question - and as many here say, Medics often just shrug their shoulders and move swiftly on to another topic!

[Longtimer in reply to whisperit]

Interesting....just in case I decide to have the test myself...do you mind telling me where you had it done....sometimes it`s a process of elimination, to come to some sort of answer....but in the end though what was suggested for you?....

PMRpro has often said it maybe that not everyone absorbs all of their pred (no doubt rheumies would disagree) I have been on 9mg for months....(PMR nearly 7 years) cannot lower without major flares.....and don`t feel well now…so who knows.

Thank you.

[whisperit in reply to Longtimer]

I sent off to medichecks.com (as recommended by Thyroid UK) for the saliva test. There are a couple of other UK based companies that do it.

One thing that I wonder about is how the absorption of oral steroids might differ depending on which part of the gut they reach before absorption, and what microflora are present in that part of the gut. For instance, gastro-resistant tablets could in theory reach the beginning of the duodenum before fully dissolving, a very different environment to the stomach...plus some of us will have odd/disrupted gut functioning as part of our conditions. Another possible source of individual variation?

EDIT: sorry, I missed the other question. The endo who sent me for a synacthen test said 'do not drop below 4 and consider increasing from 4 to 5 should fatigue persist'. However, I soon afterwards developed polymyositis, so I'm now back on 25mg methyl pred and the whole 'adrenal insufficiency' question is moot until that gets stabilised.

[PMRpro Ambassador in reply to whisperit]

Gastro-resistant tablets are designed to reach the duodenum in order to avoid irritating the gastric lining - and are also designed to be absorbed in that pH environment which is less acid than the stomach. In the same sort of way, the Lodotra/Rayos coating is designed to break down after 4 hours in a specific gut condition which requires it to be taken either within 3 hours of a proper meal or with a substantial snack including bread and ham or cheese for example. If you take it on an empty stomach it passes through the stomach quickly and isn't absorbed after 4 hours as is the intention.

Almost all medication comes with instructions as to how to take it - and for many things it is important to obey those orders. And if the patient is on long term PPI medication for blocking production of gastric acid it can have a significant effect.

[whisperit in reply to PMRpro]

excellent info, thanks PMRpro

[Hidden in reply to PMRpro]

Can you expand on that significant effect? As you know (I think) that I have been on long term ppi's.

[PMRpro Ambassador in reply to Hidden]

PPIs change the milieu in the stomach by stopping acid production and the lack of acid can affect how many drugs and substances are absorbed. Calcium for example isn't absorbed as well so PPIs can lead to lowered bone density (not that you will ever find a doctor handing out a PPI and a bisphosphonate!). There are actually quite a lot of things.

[Hidden in reply to PMRpro]

Thanks, my doctor will not admit ppi's can lead to Loss of bone density. Sometimes we just can't win even when it is printed in the patient info leaflet.

[PMRpro Ambassador in reply to Hidden]

But I bet they claim they want to practise eveidence-based medicine. That works 2 ways...

[Hidden in reply to PMRpro]

Yep, spot on ! 😍

[Longtimer in reply to whisperit]

Thank you for that.....nothing is straightforward with PMR is it??

[karools16 in reply to PMRpro]

That's right. What a shock that was!! I will be on Pred for life, but unconcerned. Endo recommends, for me, to stay on 7mg, but never below 5mg. I am, at present, on 10 mg, tapering from 30mg for a breathing prob. When I tried to go from 20 back to 7mg,my appeteite soared and the breathing worsened.Hope you return to Club Zero soon, Mark.

[markbenjamin57 in reply to karools16]

Thanks karools. Well, yep, PCZ is an aspiration. But as GOOD_GRIEF says, probably better stay at a low / slowly reducing level of Pred and be comfortable than push things and deal with a flare or worse....?

[karools16 in reply to markbenjamin57]

At least you've had a taste of it..............

[markbenjamin57 in reply to karools16]

I remember it well (PCZ). Strangely nice - or was it nicely strange?! But not totally surprised to go into reverse gear after several full-on weeks energy-wise. So, slowly forwards (or downwards) again now things are quieter...

[PMRpro Ambassador in reply to markbenjamin57]

Something like that!

[PMRpro Ambassador in reply to karools16]

A little bit of me thinks how nice it would be for someone to tell me to stick at 7mg for life - no rheumy prodding to get lower and me not needing to feel guilt as a result!!!

[karools16 in reply to PMRpro]

Yep!

[Longtimer in reply to PMRpro]

When I saw nice registrar 6 months ago she said when patients get to 7mg we don't worry about it.....doctor agreed. ..

The prodding as you say makes us worse having to keep thinking about it.....My guilt is feeling so ill and not being able to do things with friends and family.......and I still get...... "But you were doing so well!" grrrrrrrr😱

We'll get there one day.....☺

[PMRpro Ambassador]

No comment - it's all been said. Personally, I'm one for empirical research.

[markbenjamin57 in reply to PMRpro]

[bunnymom]

We seem to get between a rock and a hard place don't we? Before pmr I was on a steroid pack that started at 50 and reduced 10 a day. Day zero I ended up at urgent Care so dizzy I had no idea what had happened. Of course now I know..I feel my pmr had gone and now I am just dealing with side effects of pred. Steady she goes.... Upward and down on dose 😀

[HeronNS]

Found this article:academic.oup.com/jcem/artic...

and am now for the first time feeling very nervous about my future prospects for attaining zero pred. All patients who have taken corticosteroids are at risk for adrenal insufficiency and this meta study says there is no known tapering plan which can reliably result in sufficient natural cortisol production. This doesn't, btw, mean that permanent or very long term adrenal insufficiency is inevitable, but the incidence is probably much higher than we or our doctors realize. So DSNS enables us to get ever closer to zero but doesn't necessarily mean the adrenals will be any more responsive than if we'd tapered more quickly, just we'll be less uncomfortable. And PMRpro's statement that one of our number was at 2 mg and feeling fine but her adrenal's cortisol production was practically zilch is an eye-opener.

[markbenjamin57 in reply to HeronNS]

Thanks Heron, very interesting!

[karools16 in reply to HeronNS]

Gosh Heron,your post is interesting but scary.

[Mrs-CJ in reply to HeronNS]

I’m looking for a silver lining......I’ve seen a post/link on this forum, maybe more than once, where a study found that only 5% of long term steroid users didn’t get off their steroids for their adrenal insufficiency. As I recall, 50-something percent had adrenal function return after about a year and the others (except for 5% of them) retained their adrenal function at about the 2 year mark.

What is so frustrating about these studies is that they don’t give details about reduction plans used, and/or other medical steps taken with the patients. Grrr 😡

[HeronNS in reply to Mrs-CJ]

This is what I've believed, too, and I didn't read the article carefully enough to note whether or not they are referring to the temporary adrenal insufficiency I think we nearly all suffer, or something more significant. And I'd like ot know if a tiny dose of pred over a longer period of time is beneficial or only prolongs the process of recovery.

[Mrs-CJ in reply to HeronNS]

I think forum members need to be sure to share their adrenal insufficiency information.....from their personal experiences and their doctors’ advice. Then everyone else can try out things that “speak” to them and hopefully eventually there are some pretty good options for everyone with AI.

Thanks to our PMR/GCA experts we have some great reduction plans.....and now I’m ready for some great ideas to help me ramp up my stubborn adrenals!

My plan is to get off all prednisone as soon as my body allows because of my osteopenia. I would prefer to not take even a tiny dose if I think I can do without. But I will have some in my cupboard....just in case!

[Hidden in reply to HeronNS]

Interesting, but 2mg and feeling fine even when addrenals are not working, just doesn't make sense to me.

[HeronNS in reply to Hidden]

I think what a lot of us are talking about isn't complete shut down of cortisol production - it's the inadequate response of adrenals to provide us with the extra shot we frequently need just to go through life in a normal way without getting unduly tired. So one could have, 2 mg pred, adrenals which are providing close to the amount normally needed, but in everyday life things go up and down and sometimes one is more active and maybe a bit stressed, and the adrenals don't pump out enough extra to deal with that. I'm a lot less fatigued, and less frequently, at 2 than I was at 7, for example. But it's interesting to hear about even one person whose adrenals didn't seem to be working at all, but felt well at 2 mg.

[Hidden in reply to HeronNS]

Oh yes I see what you are saying. I think I was in that place a few weeks ago. I was fine on 3mg but on 2mg I started too feel slightly sick and after a few more days I had a mini flare. I am back to 3mg now and things have settled down.

[markbenjamin57 in reply to Hidden]

Sounds like par for the course Pete...

[Hidden in reply to markbenjamin57]

Looks as if we are level pegging and dealing with lazy addrenals 😟😵😎

[markbenjamin57 in reply to Hidden]

Ok Pete, race you to Pre Club Zero? (only joking...)

[Hidden in reply to markbenjamin57]

I think that on reflection 😨 slowly will be the fastest way 😭😕😁 I attempted to take a short cut and paid for the consequences.

Keep smiling

Pete 🙂

[markbenjamin57 in reply to Hidden]

Me too, recently (after having successfully tried it before). Oh well, back to the Pred-Reduction drawing board?

You too.. we'll get there in the end.

MB

[Hidden in reply to markbenjamin57]

😀

[markbenjamin57 in reply to HeronNS]

Well put Heron - I quite agree

[ConventCassie]

Ironic that at the “13 hours ago mark” we both posted about Tapering from 2 completely different angles. (I should have posted a picture too - I have a fun one wearing my new Wimbledon apron which arrived in time for the Finals!) I felt more encouraged from both our posts until this synacthen test got mentioned. We all seem to find ourselves in limbo.

[HeronNS in reply to ConventCassie]

I'm at 2 also. Was last year, then little flare, now back at 2 for what seems like ages....

[HeronNS in reply to HeronNS]

Maybe we need a 2 mg club!

[markbenjamin57 in reply to HeronNS]

Ha! Trouble is, I'd probably be an unreliable member. 2 today, miss a day, 3 next day, roll a dice the next day...

[HeronNS in reply to markbenjamin57]

🤣🎲

[Hidden in reply to markbenjamin57]

Sounds like Russian roulette to me Mark. 🤔🙂😎

[markbenjamin57 in reply to Hidden]

Sssshh Pete, Tedski will get excited...

[Hidden in reply to markbenjamin57]

Hope he hasn't been talking to Trump 😉🤔😎

[markbenjamin57 in reply to Hidden]

Tr**p? Who's he-ski..?

[Hidden in reply to markbenjamin57]

Are there somethings we should not mention? 😎

[markbenjamin57 in reply to Hidden]

I didn't mention anything. And whether I had or had not mentioned anything, I deny having mentioned it or not. It's fake news...

[Hidden in reply to markbenjamin57]

Love it ! 🤗🤣 Or should I say OYAABILU

[markbenjamin57 in reply to Hidden]

[GOOD_GRIEF]

You already know this...too steep and too fast.

Try dropping by .5mg and sitting there for several weeks before another step down. Your blood tests say "normal", but remember that was on that day and at that time, which might not be reflective of all day every day. And, you were taking pred, which may still be mopping up a low level of inflammation that could build up without your precious little pills.

At this level, side effect almost don't exist, so rushing to zero is not getting you nowhere fast. If you're stuck with a few mgs of pred forever, so be it.

As for as flirting with an inducing an adrenal crisis, I say better pred than dead.

[Longtimer in reply to GOOD_GRIEF]

I would be happy to be at 5mg right now!😕

[markbenjamin57 in reply to GOOD_GRIEF]

Can't argue with that.....

[Hidden]

Dear Mark, Having a lovely time! Wish you were here. I unfortunately have no idea why you felt so bad yesterday, or why you now feel so good today, but happy you do and hope it continues! All the best, Melissa

[markbenjamin57 in reply to Hidden]

Thanks Melissa. As the others say, probably pushing the Pred reduction too far / too fast. Oh well....

[Hidden in reply to markbenjamin57]

Maybe not... only time will tell! You may wake up tomorrow feeling like Superman!!!!

One can but hope!!!!

[markbenjamin57 in reply to Hidden]

Ha -that would be nice! Either way, better keep in tip-top shape to face You Lot at the Members' Day in September

[Hidden in reply to markbenjamin57]

OH YES! NO EXCUSES! You better be there and you better be GOOD!

No pressure!

[markbenjamin57 in reply to Hidden]

[9lives]

Answers on post card !! Now that takes me back . Do you think the youngsters of today know what that is ?

[markbenjamin57 in reply to 9lives]

Ha - 9lives, I thought that quaint expression might resonate with many of Us Lot!

Nowadays it's: 'MSG ME!!!' (send me a message please) / 'PM ME!!!' (please send me a private message on social media) and so on: with all of the traditional Rules of Spelling, Grammar, Punctuation and Courtesy ignored completely - or mangled to death.

Yours obligingly

Mr Mark Benjamin Esq.

Lieutenant Corporal, HRH The Queen's 21st Grammar and Punctuation Regiment

(Retired - or am I...?)

[Sandradsn in reply to markbenjamin57]

When I left school and worked at a bank we always addressed letters..

J.Blogs Esq & Mrs S.Blogs.

I always wrote with a pen and ink but was learning to touch type at college.😊

[PMRpro Ambassador in reply to 9lives]

The phrase or a postcard? My niece of 24 (or so) does - I took my brother and family to Lake Garda and they all demanded to find postcards!!!! It isn;t easy these days!!!!!

[markbenjamin57 in reply to PMRpro]

So there's still Hope for the hand-written word?...

[PMRpro Ambassador in reply to markbenjamin57]

It seems - though whether it is spelt proper is another matter!

[markbenjamin57 in reply to PMRpro]

That's wot I always say!

[HeronNS in reply to markbenjamin57]

Definitely. And last year apparently the printed book staged a comeback in sales while e-books either stayed the same or declined.

[markbenjamin57 in reply to HeronNS]

Just as well, since my Epic is only available in print..! (Note: shameless plug for silly PMR book 'Write Me Funny...' etc - as 25% of the net sale proceeds go to PMRGCAuk)

[Sandradsn]

When ?why ?How? ...who knows! I don't. At least you've tried the club zero and obviously not ready for clubbing yet 😁

[markbenjamin57 in reply to Sandradsn]

Ha! But there's still time...

[Sandradsn in reply to markbenjamin57]

Yep don't put away your dancing shoes yet!

[markbenjamin57 in reply to Sandradsn]

Or the flares, paisley shirt and kipper tie...!

[Sandradsn in reply to markbenjamin57]

Exactly !😂🤣memories of the long hot summer of 76 again?😅

[markbenjamin57 in reply to Sandradsn]

I remember it well - carefree days as a teenager!

[powerwalk]

Very interesting. Hard to predict what is going to happen when you try these things. I would just say - I had a similar few days last week - with no messing with the pred - extremely lightheaded/dizzy - like vertigo - nausea and felt horrendous. Turns out I think it was a bug/virus. Just something to think about - not saying you should mess with your meds again!!!! Best wishes.

[markbenjamin57 in reply to powerwalk]

I agree powerwalk - I think any number of things can put extra strain on weak adrenal function - even if previously ok at a level Pred dosage. That's the unpredictable bit of the equation!