The Lighter Side: ‘Uncle’ MB’s Pred Paradox - Answers on a Postcard Please…?! ;-)

[markbenjamin57]

Greetings Polymylingerers and Pred Playmates everywhere.

I hope you are well - or at least surviving on the Journey and trying to see the Lighter Side of our illnesses (not to mention Life’s Challenges In General..).

Now, here’s one to get your collective teeth into. I know you some of You Lot like a challenge - The Aunties especially - - so here goes:

First, for those who don’t know my PMR History: I am from the UK, age 61, Previously fit and active, Dx PMR 3 years ago, started on 30mgpd Pred, the usual Helter-Skelter tapering journey with a few hiccups (flares) and ‘stuck’ between 10 and 7.5 mgpd for several months in 2016 / 17. For me, at least, DF (Deathly Fatigue) is probably one of the most nasty and haunting symptoms of existing in the Twilight World of PMR and similar AI illnesses. No, not usually Life Threatening - but Life Changing all the same..

Yes (in my opinion at least), the ravages of chronic Auto-Immune illnesses like PMR and GCA combined with the powerful drugs to manage the symptoms are bound to bring some co-lateral damage in terms of their effects on Mind and Body. But, as many of Us Lot know, and in Life in General, there is often a ‘Trade-Off’ (compromise) in such things…

But back to the Plot: I experienced a sudden and miraculous relief from all PMR symptoms for a month in late 2017 - despite ambitiously reducing from 7.5 to 5.0 (n.b. NOT recommended as per DSNS!) due to feeling rotten (dizzy, nauseous, spaced-out) and with a nagging suspicion that the Preds might be to blame. My amateur conclusion? The Side-effects of the Preds were worse (at that stage, at least) than the possibly temporarily remitting PMR disease activity and symptoms. But, soon after, it was back to PMR ‘Business as Usual’ with all its twists and turns. The term ‘Heterogeneity of Disease Course’ comes to mind..

Ok, so Fast Forward: I reduced steadily to 2 mgpd Pred in December 2017 but with gradually returning symptoms (the usual pain and stiffness) over Christmas (Ha - Yo-Bl***y-Ho!). So, following the Best Advice here, I nudged back-up to between 4 & 5 mgpd from December to March to compensate during the UK Winter Freeze and through a bout of Man Flu (yes, I know, the worst kind :-D). Recently, I usually take the Preds last thing at night.

Now, here’s my 64-Thousand (Million?) Dollar Pred-Reducing Conundrum / Question:

After feeling relatively ‘good’ yesterday despite being more busy and active than for a while, I decided NOT to follow my usual pattern of taking 4mg Pred last night, just to see / test if my symptoms (pain / stiffness) were worse this morning - and on Red Alert to catch-up with my Pred regimen urgently today if necessary. Before some of you say it: I well-know, The Wisdom is that Caution Rules in any or all of: reducing Pred too quickly and / by too much / stopping completely at any level, and with some nasty and potentially dangerous consequences (e.g. Adrenal Crisis).

But, to my surprise (nay, astonishment): NO increase in, and subjectively Less PMR pain and stiffness despite missing my usual nightly Pred pattern - and also despite taking none today. In fact, if anything, I ‘arose’ (no jokes please Aunties, or others here with devious imaginations..) feeling relatively much better than for a long time, although fully expecting the pain and stiffness to creep-up on me during the day as a result. But, Nope - so far, no kick-back.

And.. as I write this, (and now with a gap of 48 hours since my last Pred ‘hit’), I’m still feeling relatively good. In fact, intuitively and physically, I’m feeling better for not taking the Preds during this short period. My head is clearer, PMR pain / stiffness remain minimal, energy levels massively better, and with a feeling of being ‘Calmly Relaxed’ all round. It feels like the difference between Night and Day - Yay..!! 

Please understand, I’m not gloating on, or wanting to dine-out on this positive but paradoxical development re. NOT taking and / or breaking The Conventional Rules re. Pred tapering: nor am I advising anyone here to do the same. Reducing from 4mgpd to Zero, even if temporarily, is a very ambitious move and not generally advised by the Experts - I’m only sharing my experiences and invite your thoughts and comments either way.

So, ‘Answers on a Postcard Please..?

As always, thanks for joining-in with and contributing to this great and trusted Community.

‘Uncle’ MB :-)

[Soraya_PMR]

Calmly relaxed....before the storm???

Flippineck! Don’t really know what to say. Are you one who gets 36-48 hours of relief by pred? For me I think I get less than 24 hours, as withdrawal symptoms from reductions hit me by the first evening.

Did Teddy slip your dose into your evening Horlicks while you weren’t looking?

What are your intentions re dosing tonight? (As you know the adrenal risks)

Nice to hear you’ve had a good day. Could this really be remission? I’ve read others who wake up and feel different suddenly. If that were the case, then just a pred wean to protect adrenals maybe. I hope remission is what it is Mark 🤞

[markbenjamin57 in reply to Soraya_PMR]

Thanks Soraya

Well, we'll see! But I trust my Gut Feeling based on past experience - and faith in myself too.

Yes, Teddy might-well sabotage things for me (esp. in view of his mysterious R***ian heritage and piercing blue eyes), but at least he does a decent job on valeting the Limo for a good old fashioned 'English Fiver' each time.

As for Pred 'dosing' tonight: I'm feeling Bullish and will desist: but.. with a cautious eye on symptoms and a supply of Preds at the ready in case of any nasty feedback.

I know: the idea of going into 'Remission' can seem like an elusive dream with conditions like PMR / GCA - but I live in Hope

MB x

[Soraya_PMR in reply to markbenjamin57]

‘Tis a fine line thou walketh Sir Bullish.

Pray, Sire, that the twin appendages atop thine renal organs do not sabotage thy hopes and desires for wellness. Cover thine @rse so that it shall not be bitten.

[markbenjamin57 in reply to Soraya_PMR]

Lovely, Soraya !! I'm laughing as I write this x

[Hidden]

A very interesting experience Mark. Just one question, why did they start you on 30mg, as you are well aware by now, that is a high starting dose for PMR. ? Now a silly question, are you sure you just had PMR ? 🤔

[markbenjamin57 in reply to Hidden]

Ohh Pete, I replied to you just now but it seems to have got lost in the ether...

Just to say: 30mgpd Pred was my (then, now retired ) GP's advice and with absolutely no insight or understanding from my side about what was / is PMR and / or what was / is an appropriate type or level of medication. 'Rabbit in the Headlights' comes to mind...

Also, yes: my new GP also questioned the Dx of PMR despite that of a very reputable Rheumy.

Work in Progress, I think..!

[Hidden in reply to markbenjamin57]

Ha Mark, thanks for the reply, don't worry about 'lost in the ether' I've got that to a fine art now, I can't find anything (only joking)

I will come back to you latter because I have started on a new project of updating the kitchen. Just changing the doors, but there are 36 of them and I have to cut two cupboard hinges on each door plus several drill holes. Started yesterday and did not feel too good with PMR symptoms around tops of legs/buttocks area this morning.

I'm down to 4mg and guess that I am too low at moment. Really struggling to keep bellow 5mg since last December. At that time a Synacthen test showed that my adrenals were capable of working, so I assume the PMR is still active.

Happy days

[markbenjamin57 in reply to Hidden]

No worry Pete, glad you're busy. If I was around the corner I'd offer to help - I like doing kitchens! :-). Don't rush with the Pred reductions - I think my situation is unusual to say the least, and of course with no guarantees..

Catch up later

[Hidden]

I've no personal experience of the problems reducing at those low levels other than what I've read from the sages on this forum. Seems risky to me Mark, you have done so well. Could set you back a long way if it goes pear shaped! Your call. ATB

[markbenjamin57 in reply to Hidden]

Fingers crossed PD, but I will keep you all posted either way..

[Rokerman in reply to markbenjamin57]

I’m with PD on this, Mark - not sure if it’s going to work or give you a flare! Well, you won’t know unless you try it I guess - so make sure you let us know how it goes, either way.

[DorsetLady PMRGCAuk volunteer]

Hi Mark,

Well I guess you can only “suck it and see”.

Do hope it’s the and of the line for you (in the nicest possible way) - but the acid test will be how long you continue to feel like you do.

All I can say is - long may it continue!

And not even going to add a “but!”

[markbenjamin57 in reply to DorsetLady]

Thanks DL

As always, 'we'll see' and I keep an open mind!

[ConventCassie]

I’m intrigued. I hope for daily bulletins here. (5 on my way to 4.5). I’m thinking your adrenal glands kicked in at a higher dose & are working just fine. Interesting you took all your dose late evening. I wonder if that had an effect? At what point did you switch to all evening?

Anxiously cheering you on & expecting success.

[markbenjamin57 in reply to ConventCassie]

Thanks Cassie. I think (hope) you're right about the Adrenal Department - maybe just a bit slow getting back to work? And, of course, even if I manage to stay a member of Club Zero, I know it can take quite a long time for the system to get back to 100%.

I started taking the late-at-night Preds some months back to see if that helped with the morning pain and stiffness. It did at first, but I have a feeling that the timing of the Preds is less of an issue if in fact the Adrenals are waking up and / or the PMR activity is ebbing (as previously).

As always, We'll see..

[SheffieldJane]

That is so interesting Mark. Radical or what? Have you had a Synacthen Test to see if your Adrenals are performing as they should? Silly question really, you are the proof of the pudding.

It wouldn’t be unreasonable to suppose that PMR had decided to s*d off after 3 years and your instinctive experiment is a success. Oh I do hope so. You give me great hope. I hate the last lap of anything. Don’t go mad though, build up your strength but maybe see it as rehabilitation now, not managing an active disease. Good luck. 🙏

[PMRpro Ambassador]

Be careful - you aren't superman (even if you want to be) and dropping that much at once could cause problems, not saying it will but pride goes before a fall. One lady on the forum was down at a very low dose and felt really well, but has next to no adrenal function. Cue concern on the part of her endocrinologist.

At lower doses, taking pred at night suppresses adrenal function more than a higher dose in the morning so you can't be sure that your adrenal function is good. Even a synacthen test can't answer that question - just whether they can work at all.

PS - a few weeks ago Teddy was of German heritage...

[Sandy1947 in reply to PMRpro]

At what dose is it recommended to take Pred at night?

[PMRpro Ambassador in reply to Sandy1947]

Not so much a specific dose - it would be if it worked better for you. If you are on doses above 8mg or so for any length of time, or at higher doses for even a month or two, there will be a degree of adrenal suppression whenever you take your dose. Then what is important what allows YOU to get the best result from the lowest possible dose.

[markbenjamin57 in reply to PMRpro]

Yep PMRpro, I agree. Actually, your point about greater adrenal suppression with a nightly Pred dose (compared with a daytime one) was one of the things that prompted me to change the timing. Maybe, just maybe, this had a part to play... ?

As for Teddy - Confession Time: there are 2 Teddys. The genuine one.. and his Body Double as a security measure. And who knows, there could be even more 'Teddys' out there...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

He’s obviously a politician! They change their allegiance faster than a Premier League footballer.

[markbenjamin57 in reply to DorsetLady]

:-D!

[PMRpro Ambassador in reply to DorsetLady]

Told you he was crackers...

[ConventCassie in reply to PMRpro]

So to not let IL-6 create havoc - are you saying the adrenal glands Will function poorly? Which follows that if they DO create havoc then the adrenal glands will perform better? I was hoping for just the opposite.

[PMRpro Ambassador in reply to ConventCassie]

Sorry - don't know what you mean?

[ConventCassie in reply to PMRpro]

The reason I take the pred at night is to affect the IL-6. You said,

“At lower doses, taking pred at night suppresses adrenal function more than a higher dose in the morning so you can't be sure that your adrenal function is good.”

I was asking why just the opposite wouldn’t happen.

[PMRpro Ambassador in reply to ConventCassie]

The inflammation in the mornings isn't anything to do with adrenal suppression and the pred doesn't actually affect the IL-6, it removes the inflammation caused by the shedding of IL-6 - like mopping up the water from a dripping tap as opposed to replacing the washer. The only drugs available that actually interfere with the IL-6 are tocilizumab and the other very similar drugs in development.

[allykat]

I am a seasoned trooper when is comes to GCA but PMR is pretty new to me so I can't offer any advice. I do wonder though.....what dose would you go up to if the PMR rears its ugly head? If you need to go to a higher dose than 4 mg then have you just taken two steps backwards? Mind you, if it were me, I would be tempted to see what happens and take the consequences.

[markbenjamin57 in reply to allykat]

Thanks kat

[jinasc]

Virtual Postcard:

It probably means that you adrenal glands are working, but don't take that for granted, it can and does take up to 18 months for them to become fully functional. I would be wary and don't push it, but do push for an ACTH test.....................I had one at 5mg and it showed up and running.....................and in his words - fully functioning..........I doubted those words.

7.5mg = sometimes they kick in 5mg = should have. But remember I was GCA only and it was 5 years on pred.

It might just be that they have given you the equivalent of the 4mg you were taking and you could quickly run out.

In the vernacular.................'gan canny' you have got this far so for a 'pennyworth of tar' make sure you know it is worth it and DL and PMRpro read twice.

PS: Remember also that sometimes we forget to take the dose at the right time or forget it completely. I think it must happen to everyone somewhere in this journey we have not willingly undertaken. We survive that omission, but...............................

PPS: If and I mean if, anything untoward happens................hit it hard and hit it fast.

[markbenjamin57 in reply to jinasc]

Thanks jinasc

Well, I had got down to 2mgpd fairly easily before Christmas. Then, 'upped' to 4/5 mgpd during the cold snap and with the flu. Maybe this gave the adrenals a bit of a rest, and now they're ready for some action - given the milder weather and the flu being out of the way.?

But I agree with you all - Caution Rules (even / especially when feeling ''better') and I'm always armed with a supply of Pred + a steroid card just in case..

Thanks for the advice and support, I'll keep you all posted..

[jinasc in reply to markbenjamin57]

Well it might be, just might be that:

1) I suspect you are a 'bloke';

2) Lower average end of age for PMR sneaking up on you three years past;

3) Been, on the whole completely off the wall;

4) It is time for remission;

5) 4 is because you really are a bloke and according to the 'experts' 2 years average for male blokes.

6) I will cross everything but not my eyes, never could cross them and there are no exceptions either

[markbenjamin57 in reply to jinasc]

Let's hope so jinasc.. I'm ready to get back to Business as Usual (whatever that is..)

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

Love your comment 1) !

I’m sure he’s a bloke too, but whether a true Viking, not sure, and a Lady, never!

Just tried crossing my eyes - bad one does it, good one not...how weird is that!

[jinasc in reply to DorsetLady]

Freya

A bad-eye one cross-eyed Arien Viking and NOT weird at all. Wow!!!!!!!!!!

Hel

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

Hel,

Thanks. You say the sweetest things 😳 Freyja

[Scotte in reply to jinasc]

Lol... love it! copied and pasted... And of course gave you full copyright ....

[PMRpro Ambassador in reply to jinasc]

Can't imagine what makes you think he's a 'bloke'...

[jinasc in reply to PMRpro]

Daft and Brainy springs to mind...................... Roll eyes - can't remember where the emoticons are - if I ever knew

[Soraya_PMR]

How many hours now? And how are you?

[markbenjamin57]

48+ hours at Zero (last Pred on Weds ev), still feeling ok... in fact better than before.

[BonnyQuine in reply to markbenjamin57]

Rooting for you here, MB. It's enormously encouraging, even if you are a bloke.

[markbenjamin57 in reply to BonnyQuine]

Thanks Bonny, I'll try to live up to everyone's expectations!

[ConventCassie]

I’m thinking wouldn’t it be lovely to all REVOLT together like Mark? So tempting. (The team effort to slay that virtual Dragon is calling me.) Ha!

[markbenjamin57 in reply to ConventCassie]

Lovely sentiment Cassie, but No No Noo!

As they say: 'DO NOT TRY THIS AT HOME'!

[SheffieldJane in reply to ConventCassie]

God like a load of Lemmings imagine the press!

[bunnymom]

Good for you Mark. I too wonder at times if it's the disease or the meds. I just returned from a six hour plane flight (where I slept on the cold airport floor for the night after missing a connection) and I feel pretty good. Not too tired, more like a regular person. I think I must be getting well. Was 2 years in February pmr only. I will be at 6 next week. Not only do I want my body back I long for a normal brain. I was 62 yesterday Btw. Keep us posted

[DorsetLady PMRGCAuk volunteer in reply to bunnymom]

Happy birthday for yesterday.

Another Aries.......there’s definitely something in that...perhaps I should start another thread along the lines of my Vikings one!

[Scotte in reply to DorsetLady]

Hmmmmm... I'm an Aries also... April 1st...

[DorsetLady PMRGCAuk volunteer in reply to Scotte]

That’s it then, need to raise another post on the subject of zodiac signs and PMR/GCA.🤔

[SheffieldJane in reply to bunnymom]

Happy birthday for yesterday bunnymom. Really! Not even a twinge?

[bunnymom in reply to SheffieldJane]

No it's like a miracle to me! Still not too tired today. I keep waiting for a crash. My body clock is still 2 hours off (on San Diego time) but not pmr tired.

[SheffieldJane in reply to bunnymom]

Wow, Perhaps it caught the wrong flight. That is really hopeful. I would be severely mobility restricted after a night like that and popping extra Pred.

[bunnymom in reply to SheffieldJane]

That was what I expected... Exactly

[markbenjamin57 in reply to bunnymom]

Thanks bunnymom Well, that was my dilemma last year when I made a rather ambitious drop from 7.5 to 5 mgpd on a hunch, and felt much better all round. And with similar results, this time around. I agree, when the symptoms lift and / or the PMR settles down, the difference is quite dramatic physically and mentally. Day 5 of Zero Preds today - so far, so good. Will update again soon..

[Scotte]

Very interesting MB... and I honestly think you may be a brother from another mother... older brother in case you have forgotten!!!

You may recall my post a month ago… “Let it Snow…”. Like you I was at 4mg and feeling better than ever. After removing snow in the neighbourhood for 4 hours plus, I plopped myself down on the couch and waited for the repercussions… they never came. At least not the debilitating pain of PMR. Stiff muscles…yes… it was actually a great feeling. Like you, this got me thinking. Am I in remission?

Now unlike you Big Bro’, I didn’t just stop. I have been doing a SFDS (SuperFastDon’tStop) taper. My fear was the adrenals. I am now down to 1mg and feeling good. In fact the crazy fatigue is gone. I’m shooting for 0 in the next 2 weeks. I go for blood work next week…

Like you since hitting 5mg I take my Pred at night…Alarm set for 20:00. I have been splitting my dose since 12.5mg, half in the morning, half 12hrs later.

Like jinasc said… I am…

1) a 'bloke';

2) Lower average end of age for PMR sneaking up on you three years past;

3) Been, on the whole completely off the wall; (leaving this one for you)

4) It is time for remission;

5) 4 is because you really are a bloke and according to the 'experts' 2 years average for male blokes.

Keep us posted and so very happy for you…

Scotte

[SheffieldJane]

All the boys are getting better! It’s not fair!😫

[JulieR2]

Well Mark I hope the new way of reducing “dead quick” works we are all waiting and hoping that positively it does. I am now reducing to 2mg and have often wondered what will happen if I stop!!! But not planning too any time soon I often find that I have to stick it out for at least two weeks as I reduce as I have learnt that it takes at least that time to feel okay! Keep us posted because I am wondering if the pred is helping me right now or just contributing to my dental problems! Another tooth fell out this weekend! At least it’s one they are working on.....,

[markbenjamin57 in reply to JulieR2]

Thanks Julie, me too. As mentioned, DO NOT TRY THIS AT HOME! just in case you have a different (i.e. worse) reaction. That's ironic about your tooth!

[JulieR2 in reply to markbenjamin57]

I won’t but hope it’s all good for you! My tooth has gone back in ( it is a crown) two more normal appointments then I will have an implant to replace the one that got away! Started Weight Watchers! Started reduction to 2.5 of prednisolone. So hopefully I am out of the dip

[Estellemac]

Hi Mark

How's your experiment going? Hope you are managing. I always say don't knock it till you try it but draw the line at cannibalism. XX

[powerwalk]

Ooooh - keep us updated on this. Hope it works out - hope for all of us!!!! Best of luck!!