The Lighter Side: Update from The New South Wing at Benjamin Mansions from your Pred 'Double Agent'.. ;-)

[markbenjamin57]

Greetings All on a Friday Evening in the UK

Well, what to say and where to start..?!

First, Hoping you're all Coping (please forgive the accidental cheesy rhyme). I'm still tuning-in every day to your various Posts and stories: but as a few of You Lot will know, Life's been hectic here with my home move (and all that goes with such things..), so I haven't had the time or energy to contribute and respond here as I would normally like to. 'Cream Krackered' is the best description for how I feel. You non-Brit PMR GCA Lot might be able to work-out the Cockney Rhyming slang. If not, ask Dorset Lady or PMRpro

Here: all's gone well and I'm officially IN at the new Residence. 37 pairs of shoes neatly organised (Imelda Marcos would be proud..), priceless collection of 14 original Van Gogh paintings ('snaffled' at charity shops for a few old fashioned 'English Quid') proudly hung, antique Roman marble statues balanced carefully on the balcony, and the inimitable but devious Tedski now securely chained-up outside, on a curfew and having had the Limo keys confiscated and his passport revoked after his recent escapades with the enigmatic 'Olga' in the Salisbury area of the UK. It's difficult to get good staff nowadays...

More relevant perhaps (?), progress on my Zero Pred Double Agent experience from a few weeks ago. Ok, as I suspected: Club Zero was only a temporary / provisional membership with conditions attached, no guarantees, and in context. Due to the sheer physical 'load' (heavy lifting, shifting, doing, organising etc) for 3 weeks, I confess that I've dipped-back (under cover) into the Pred Club a few times when feeling the need to top-up on Cortisol and the physiological Energy Battery. I trust You Lot not to blow my cover...

By 'dipped back', I mean: when feeling the DF (Deathly Fatigue) after much Humping and / or feeling Very Stiff and Aching in the mornings (no smutty innuendos please, Aunties...), I've taken to 'popping' just a few Mgs of Pred (e.g. 2 / 3 / 4) as appropriate on some days to balance out the worst of the symptoms if and when necessary. It really is a case of Day by Day - and, again, in context.

My (amateur) Conclusion?

At these relatively low (or even Zero?) levels of Pred, my logic / intuition / experience / learning from this trusted Community is that varying degrees of external 'Load / Stress' (physical and / or psychological) can and will still put some strain on a complex and fragile Adrenal / HPA set-up after a long lay-off with PMR (and perhaps GCA). But I acknowledge that with long-term artificial Corticosteroid intervention - and even if we feel that we are 'out of the woods' with these types of AI illnesses and the medication that manage their symptoms, they are so difficult to predict or manage at the best of times.

So, perhaps.. we have to try to exercise some Judgment about what's 'best' to do in terms of Pred dosage / patterns in our personal context at the same time as following even the most respected of tapering regimens? Yes, it's a difficult call for those of Us Lot who like and / or need Predictability and Certainty in Life.

That's my best shot at justifying my (new) Pred Club / Pred Club Zero 'Double Life' from day to day. Although I respect the overall principles and success of the DSNS Pred tapering methodology, I do feel from experience that Context also matters - and that when it comes to the crunch, we have to make informed decisions and judgements about what is best to do / not do in terms of Pred 'toggling' (+/-) in our own context. Confusing or what?! But at least, we have a reliable and trusted sounding-board for our experiences and concerns here.

But there's better news to come (or worse, depending on where you are on the PMR / GCA / Pred Journey, and in your own context). I'll probably be rambling-on about my Double Identity / the PMR Pred Paradox for some time to come. So, for the few (i.e. 5-and-a-half) of my Followers here who miss my Ramblings (Ha ha - as if!), I WILL BE BACK!!!! For those of You Lot who don't know me, all I can say is: count your blessings

Best Wishes to All for a peaceful weekend wherever you are. And, as important, try to keep smiling on the PMR GCA Journey through the Tough Bits

'Uncle' MB

p.s. Pics of the panoramic views from the South Wing of MB Mansions to follow as soon as I have the energy to lift the camera - and also to fight-off an increasingly belligerent Tedski on the balcony...

[SheffieldJane]

Thanks for the update, we were wondering. The judicious use of Pred makes sense. Tedkski is probably using his smart phone to broadcast fake news. Italy has had no government since March. The Spanish premier has been arrested for fraud and been replaced by a vision of a basketball player and Trump is getting cosy with Kim Kardashian and calling it work. He’s been busy, don’t you doubt it.

Hope you are happy in your new home, it sounds splendid!

[Elaine-W in reply to SheffieldJane]

Love the Sheffield Chronicle. Could it be a regular feature please. Hope you are well and the DF is abating xx🌸

[ConventCassie]

It appears from the photo- your new digs are agreeing with you! Why on earth thou, did you pick a time such as your move to jump down to Club Zero?

[Hidden]

Hello MB

Ooh you’ve moved!......

l’m lying awake in a Premier Inn having taken the keys for our Rental House yesterday, the top of our chain has decided to buy a different house & only informed the rest of us as we were about to Exchange Contracts! Oh The Joys of Moving House!

So l took control of the situation & said right, we’ll still Exchange, move to Telford & Rent so that’s what we’ve done.

Yesterday l was shattered & only had a dining chair to sit on so my bed at the Premier Inn is divine!

Off to Supervise the Upgrading of a Storage Unit this morning & the Big Move is next Friday!

I plan to increase my Pred from Thursday to get me through just by 2.5mg x 3days as per the Endocrinologist l’ve seen recently!

Look forward to see photos from the South Wing, l do love a house with a Wing!

Keep Well

Mrs N 💅🏼

Soon to be Glam~Ma 🤱🏻

[Telian in reply to Hidden]

I know it hasn't been as easy but your planning seems to have gone so well around the stresses this move's brought you - I think when you're 'in it' you just have to get on with it which you've done admirably - congratulations! Think the forthcoming baby might have something to do with spurring you on! Good luck for next Friday will be thinking about you..

[Hidden in reply to Telian]

Thanks Terri

Even though l was shattered, it was a successful weekend, tomorrow we’re decanting the garage & shed to my Aunt’s, so it’s all going to plan 🙏🏼 except for the curtains, we borrowed some from our son who has just re done theirs & Baby’s Room but they are about six inches short! 😂 it’s not a good look! I’ll sort it out one way or another!

Hope you’re doing OK?

Thanks for your good wishes.

Angela xx

PS ~ When l say ‘We’ that’s the Royal We, I point & DH does the work! 💁🏻‍♀️

[Telian in reply to Hidden]

The adrenaline will keep you going just allow the rest time when able....short curtains eh! reminds me of the days of Windolene - we'd use that or newspaper as a quick fix when decorating.

The garage - it's like another house the stuff we've got in ours, at least you've got someone to supervise...still doing good you are...so exciting for you both.

I'm doing good thank you - enjoying this glorious weather in the garden.

Terri x

[SheffieldJane in reply to Hidden]

So excited for you MrsNails! You make such sensible decisions. You are going to be a very wise Glam-ma.

[Hidden in reply to SheffieldJane]

Thanks Jane, but it’s all changed now, how we ever brought ours up l’ll never know! I’ve had experience with all the different thinking when our niece had her daughter about what you can & cant do!

Terry calls the Health Visitors etc ‘The Baby Police’ 🤦🏻‍♀️

One needs to be diplomatic saying ‘have you thought of’ or ‘could’ not ‘should’

Looking forward to it all though, had a test drive of the Pram yesterday when we called around to see the Proud Parents to be!

Hope you’re feeling OK?

Speak Soon

Angela xx

[Hidden]

Hi Mark, good to hear how you are getting on. My main concern is that you are "popping" pred as and when to cope with symptoms. Can you be more specific in what your symptoms are which necessitates the 1/2/3mg. For instance, is it pain, if so where is it! Shoulders, buttock, legs etc. Or is it just fatigue ? This might prompt some conclusion as to whether you still have PMR or is it just adrenal fatigue ?

Pete 🙂😎

[PMRpro Ambassador]

We have always said that it takes at least a year to get "back to normal" even after stopping pred altogether. It isn't mechanical like a car - it's a biological system.

I don't know about the South Wing - sounds more like winging it to me...

[Hidden in reply to PMRpro]

I will forgive him because he is a youngster. How's that for being politically incorrect. It should wake him up though 🤣😎

[DorsetLady PMRGCAuk volunteer]

Hi Markus,

Much as I admire your attempt to get to (and stay at) Club Zero, I don’t think your approach is doing, you, your body, or your PMR many favours!

As someone who shoots from the hip first, and then asks questions I have to drag my sensible (boring, boring) and cautious (even more boring) head out of the cupboard/closet and say ‘think you got it wrong!’

As others have said, bit concerned about the ad hoc approach to medication, and your timing to put it politely was rubbish - that’s always assuming the move has been in the offing for some time!

Get thyself back on a sensible dose, 3mg might be good, and then taper in a timely manner. There, said it was going to be boring!

As Pastit says it could be AF or PMR, but I think it might be worth trying whatever. As PMRpro says it does take time for body to get back to ‘normal’ - but this sounds more than that!

[PMRpro Ambassador in reply to DorsetLady]

I've got the same outfit on as DL. Surprise, surprise - I agree with my friend. I nearly said it before but everyone thinks I'm a misery and boring so I was sitting on the fence. I've jumped off again.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

I find it very painful sitting on the fence! 😳

As you well know 😏

[PMRpro Ambassador in reply to DorsetLady]

So did I - so I won't again...

[Hidden in reply to DorsetLady]

"Painful sitting on the fence" I agree, mine has got anti climb spikes on it metaphorically speaking of course

[SheffieldJane in reply to DorsetLady]

That’s you busted Mark. She’s right, you know she is.

[jinasc]

Mark

I would go further than DL and PMRpro, but then I am not such a nice person.

However we do have one thing in common (you can work that one out for yourself).

I expected more sense from you. You know very well that PMR is never cured, it goes into 'remission'. Yesterday when being driven back from a long meeting, my chauffeur who is an ex-Fireman who climbed mountains (Everest at least twice included) who does park runs and raises money for 'Fire and Ice' (you can google that) and raises awareness etc' said I am now two and a half years in remission" followed by "You were so right all those years ago, it does not go away it lurks and when I do too much it lets me know it is around and I put my thinking head back on".

Don't mess around, if it is back, it is back and needs to be dealt with sensibly................if not you well know the consequences one of which could be a longer haul and that you do not want.

Get back to your GP, get bloods done (remembering they are only a guideline to tell you and your GP something is going on............ see if 10mg works and then come down slowly and steadily. In other words, hit it hard and hit it fast before it has time to take a complete hold again.

No, I am not sorry for posting this...............I just want to make you stop and think.

PS: I have sent you a message because my IT guru is not around.

[Sandradsn in reply to jinasc]

I didn't know that! So PMR never really goes away? Oh joy!

[PMRpro Ambassador in reply to Sandradsn]

The underlying cause, the autoimmune part, burns out and goes into remission in anything from 2 to 6 years for 75% of patients. In the majority it stays in remission but a small number may have relapses - and it is said the quicker it seemed to go into remission and you got off pred, the more likely you are to have a relapse. They can happen within a few months or not for several years. A second episode may be nothing like the first - in any sense, how it presents, the dose you need, how long it takes to go away. And in about 5% of patients it never goes into remission.

[Hidden]

Glad you got all moved. It's hard work. I think there is a problem distinguishing between "natural" tiredness when doing hard physical and mental tasks and the onset of fatigue. Or indeed THE deathly fatigue. I am sure DL & PP have said the necessary. I am at 8mg still so have got a lot to do to "catch up" and I hope I can tell the difference between fatigue and tiredness. I was very tired after a family weekend and a med mix up but I decided I was just tired as sleep isnt playing at the moment. My fibro seems to be active at the moment too. I found this out because extra pain killers helped. Get settled in.

Ps I thought tedski had travelled to the Ukraine...turned out to be a hoax!!

[SheffieldJane in reply to Hidden]

Didn’t he falsely claim that he was shot?

[Hidden in reply to SheffieldJane]

Yes. The minxski.

[Hidden in reply to SheffieldJane]

The disguise was excellent.

[PMRpro Ambassador in reply to Hidden]

Brilliant idea to go bald...

[Hidden]

Good to hear from you as always Mark, always love your positive comments. Good luck in your new abode and have a nice weekend. D

[HeronNS]

Further to the extremely sensible comments from the ladies who submit to your "Aunties" term of endearment: When I started pred my doctor told me that many of her patients keep a supply of 1 mg tablets on hand even after they have weaned off. The idea, as I understood it, was that one might need the occasional dose and eventually these occasional doses would become fewer and farther between (like our DSNS taper, only stretched out) and eventually you wouldn't need them any more. It concerns me that you are taking significantly larger doses than a single mg from time to time. If you need 2 or 3 or even 4 mg then you're going to have to admit that the taper isn't properly over. Welcome back to Club Pred!

[Sandy1947]

Nice photo! Enjoy your new digs! Listen to our esteemed aunties!

[karools16]

You look a right cheeky chappie! Like the cat who has the cream?

[Grants148]

Pleased to hear from you again Mark,sorry you have had to take some preds again,l hope you can come off them again soon.looking forward to some photo’s of your new location,hope Tedski does not try to steal the show .