The Lighter Side: LEAVE or REMAIN? The BIG Existential Question...? ;-)

[markbenjamin57]

Greetings All, from Benjamin Mansions

Well, here we are again. November creeps up on us like, er, November always does (funny, isn't it?. The Clocks have gone back (in my case, to 1976 after listening to the classic Bee Gees album 'Saturday Night Fever'), short days close-in on us, and Christmas is around the corner - Yo Ho Ho! And, then, we start all over....

But enough of that seasonal nonsense - as if Us Lot haven't endured it before. The BIG Question - for me, at least? A Question that's dominated my thoughts here in the UK all week. Simply, whether it's best to LEAVE or REMAIN?

Yep, it's a tough one: REMAIN at 2 mgpd Pred (arguably safer?), or LEAVE 2 mgpd and jump-off the recent Pred Plateau precariously to, er, something lower ranging from 1.5 to Zero, or any permutation in between: for any interval, any length of time, and at whatever time of day, and however rapidly (arguably more risky?). Mmmm, a Tough Call, and a tough Negotiation (mainly with self - no-one else seems to be interested).

I've been in heated talks with the Cabinet all day (the Pred Cabinet, that is). No progress - the Cabinet just stares blankly back at me as if to say: "MB, you're on your own with this one". Hummppphhh - but that's cabinets for you. Mine came from IKEA - maybe that's the problem.

As for Tedski? He's now a mere Back-Bencher (in the local park - I dumped him there today after we fell-out over the recent quality of his Boeuf Stroganoff recipe). You just can't get good staff nowadays.... I blame the Vodka.

So, it's a Leap of Faith for me. Into the Unknown, and Alone. After a day off of the Preds and feeling massively better (before you say it - I know, paradoxically) I'm once again Leaving the safety-net of The Known (albeit with its constraints and compromises) of 2mgpd and venturing into the exciting world of the Unknown: something other than '2' - with all of its potential Downsides and Benefits. The term 'Managing Contingencies' comes to mind..?

But, how much other and / or lower than 2 mgpd Pred - and for how long? As before (and heeding the good advice from You Lot - Aunties especially), cautiously does it: but methinks not TOO cautiously. I have previous form for this kind of thing.

My Conclusion?

As with many difficult and major decisions in Life, there are Pros and Cons either way. Such decisions involve making as sound a Judgement as possible in the circumstances - and with reliable, trusted facts and information to support them. But, at some point, we just have to Get On With It! That's my theory, for better or worse..

So, it's a Leap of Faith for me: LEAVE or REMAIN? 'PREXIT*' or NO 'PREXIT'? (*PREXIT = Pred Exit). So much for my week here.

BTW... anyone here know what's been going on in our national News...? The same old political stuff I presume..?

Keep smiling on the Journey - and don't have Nightmares about either BREXIT or PREXIT. All will be ok... so long as you take care in the process.

'Uncle' MB

(p.s. can anyone here lend me £39bn for a few weeks (or maybe a bit longer..?)

[Sandradsn]

Hi Mark,Could you just try 1.5 for a couple of weeks then 1 ,then off it.Thats what my aim is,I'm sick of being on this stuff.Currently on 3 and ok.I could lend you 39p 🙄

[markbenjamin57 in reply to Sandradsn]

Hi Sandra, sensible idea. At low Pred levels I know it's tempting to jump-off the tapering slope to Zero prematurely - but then have some kick-back in terms of a flare and get into a Yo-yo situation. I'll see, as usual ;-).

Thanks for the generous offer of 39p! But can you send it in a plain brown envelope in case Tedski intercepts it?

[Angiejnz]

The beauty of prexit or no prexit is you have the chairman's vote without a referendum where others decide for you. Also you don't have months of brokering a prexit deal - be glad your cabinet has chosen to stay silent! Good luck 😎

[markbenjamin57 in reply to Angiejnz]

Thanks Angie!

[PiersC]

Ah - winter in northern Europe (or not Europe), Prexit and Brexit all at the same time as decisions needing to be made - time for a lie down and calming glass of non-frozen reddish stuff!

I have finally reached the big '2' - 2.0 to be precise and I have those little thoughts creeping in - do a 'MB' or not do a 'MB". I am feeling great, did the lawn yesterday (massive corner block that is going 'mental bonkers' as you northern types would say with a bit of light rain and more and more of the shiny stuff happening) - and did an hours walk as well. Unheard of.

Being a conservative (I think you have those 'up' there as well) I might stick to my rheummies plan to stay on 2 over the dreaded stress filled Xmas period and start again reducing mid January. He has me reducing at an impressive 0.25mg per fortnight - cutting the pills to dust is interesting micro surgery in its own right....

All the best rehabilitated the staff - maybe a few dust cloths on a couple of the mansions wings over the quiet season will give him some relief...

[markbenjamin57 in reply to PiersC]

Ah, Greetings Piers - and nice to hear from you! :-). The Sun's setting in the West here tonight but I'll summon the energy to reply in more detail tomorrow.

[jinasc]

How long have you been on pred?

Put Synacthen Test in your search engine and consider.................

[markbenjamin57 in reply to jinasc]

Answer: Too long (ok, nearly 4 years). But several months ago, whilst stuck at approx. 3-4 mgpd Pred my well respected Rheumy (a Kirwan Protegee) determined that I probably didn't need one. So, at 2mgpd (and on my feet / feeling much better generally) I tend to agree.

And Yep, I know about Synacthen / ACTH tests (from here, mainly). But thanks for the mention

[jinasc in reply to markbenjamin57]

Sami? and you could not be in a better place with them.

[markbenjamin57 in reply to jinasc]

Yep, Sami Zakout - ticks all the boxes for expertise and Consultant / empathetic Patient style

[karools16 in reply to markbenjamin57]

MB, I don't want to be a wet blanket but................. Remember I was on 2mg Pred, last year, felt very well, sent for S Test. Result Addison's. Can't be too careful. Tedski needs Pred. Moonface. Sorry Ted.

[markbenjamin57 in reply to karools16]

Yep karools, I know it's best to err on the cautious side. Tedski... Predski... Ohhh.. not 2 of us?!

[powerwalk in reply to karools16]

Oooh - did you have to increase the Pred then? Or go on something else? How long had you been on the Steroids. My GP said there's no need for a Syn Test unless you have been above 7.5 for a long time!!! Not sure I agree with that.

[markbenjamin57 in reply to powerwalk]

Yes, powerwalk. My PMR started in late 2015 and on 30mgpd Pred. Then the usual helter skelter journey with regular flares, getting 'stuck' for months at various Pred levels, but with increasingly better symptoms overall recently.

I had a total break from PMR symptoms (and the Preds - zero) a few months ago, and felt marvellous for several weeks. But the usual low level pain and stiffness started to creep back, so I reluctantly re-introduced the Preds at about 2 mgpd. My Rheumy didn't advise an alternative to the Preds (Steroid Sparers) because he said they bring varying other potentially more serious risks and side effects. Also, he didn't advise a Synacthen / ACTH test at my current low levels of Pred because his opinion is that my Adrenals are ok - just slow in starting up again. Let's hope he's right. He should be, apparently he's one of the best

[powerwalk in reply to markbenjamin57]

You are lucky to have a good Rheumy! Can't say I've had the same experience. Yes I remember you being off it that time - I was very jealous - in a good way!!! You just never know when you are going to push it just that little bit too far!!! The dis appointment is not good when it doesn't work out. Good luck with your decision.

[markbenjamin57 in reply to powerwalk]

Yep, a good Rheumy and a very good (new) GP. Neither of them dogmatic about getting to Zero Pred asap, and letting me trust my judgement - which helps a lot. I agree, it can be very difficult to judge the optimum level of Preds at any time in the context of all the other variables in the PMR Symptoms mix (e.g. other ailments, changes in the weather, stress levels, physical activity, etc) which can conspire to upset the balance.

And, of course, there's the known Heterogeneity of PMR itself - in other words, it can vary in intensity / wax and wane regardless - as I well know!

Either way, thanks and I'll keep you all posted with progress

[PMRpro Ambassador in reply to markbenjamin57]

That is a not uncommon experience when stopping even a very low dose of pred. A couple of months and the PMR bucket overflows...

[markbenjamin57 in reply to PMRpro]

Yeah yeah, whaadever...

[PMRpro Ambassador in reply to powerwalk]

"My GP said there's no need for a Syn Test unless you have been above 7.5 for a long time!!! "

Which covers almost all of us here!!!!!

[karools16 in reply to powerwalk]

I had to come off Pred immediately and go onto Hydrocortisone. Refused after 3 months of hell! Stomach aches, forgetfulness, mental probs. Endo put me on 4mg Pred. Will be on them for life, and can't taper below 5mg. Suits me. I have had GCA 13 years. Am currently on 7mg Pred. S Test usually 5mg and below.

[powerwalk in reply to karools16]

Gosh sounds rotten. I've heard that before alright about that hydrocotrisone - better off on the pred - bad as they are. Good luck with it.

[Grants148]

Hi Mark,1/2 mg. of Pred for a couple of weeks and if there are no signs of the dreaded PMR returning,reduce by half again,but of course you know all this,just be very careful because 1/2 mg.can make quite a big difference,as l know only too well !Now then Mark,poor Tedski left on a park bench !ls he now homeless,it is going to become much colder next week and he could freeze to death or even become a snow bear ,you will surely never forgive yourself should that happen .lt is only a few weeks until Christmas,the season of goodwill....As for Brexit,l am giving up on that,what a botched up mess it is,l trusted Theresa May,goodness knows where it will all end,makes me feel constantly agitated,or could that be the Pred !

[Grants148]

Meant to say reduce by 1/2 mg. for a couple of weeks at the start of previous post,brain fog again !

[markbenjamin57 in reply to Grants148]

Ahh, no worry Grants, I got your drift ;-). Turning in now (after all of today's excitement) - back tomorrow

[CT-5012]

Sorry this post is so late but I have taken your request for a loan very seriously 😒 and have been searching down the back of the sofa, under the bed etc for any spare cash and have only found eight pence, an old penny, a piece from a jigsaw and a very sticky spangle (remember spangles?) will forward the cash as requested, every little helps. Have you been at the red mood improver again? All the best. 😂

[markbenjamin57 in reply to CT-5012]

CT, IS THAT THE BEST YOU CAN DO??!!! (only joking) ;-). Yep, the RMI is working well...

[Constance13]

Mrs May has a few bn to give away!

[markbenjamin57 in reply to Constance13]

Maybe... ?

[Hidden]

Take a leaf out of Teresa's book, half in half out prexit, come down by a quarter!! Did Tekski resign or is he sending a letter?

[markbenjamin57 in reply to Hidden]

Chris, you should know me by now. I don't usually do things by halves - let alone quarters. That said, with the Preds.... To be honest, Tedski was the subject of a Ministerial Coup - but he thought it was Minestrone Soup. Bless...

[Dewdrop456]

Thank you ,I really enjoy reading your posts.You certainly have the gift of being able to write in such an amusing way.You cheered me up again.

Good luck with your decision.We all really know what we SHOULD do dose-wise but we don't WANT to increase or not reduce ,that's why we have to battle with ourselves when symptoms or past experience are telling us to do so.

I might try the .25mg dose it doesn't seem such a big compromise!

[markbenjamin57 in reply to Dewdrop456]

Thanks Dewdrop Well, it was intended with Tongue firmly in Cheek (as usual). But I agree - a slower / more gentle reduction is usually best.

[Dewdrop456 in reply to markbenjamin57]

Yes I know it was but it an increase is always disappointing however necessary.(I bought a pill cutter today so I can cut quarters ! Great excitement!!)

Are you a professional writer or comedian?

[markbenjamin57 in reply to Dewdrop456]

Ha - surely a bad sign when you get excited about chopping-up Pred pills into tiny fragments?!

Yep, professional writer (see the PMRGCAuk forum / 'Books about' section). And other things too - Yay! As for Comedian? Best to ask the other Lot here about that...

[Dewdrop456 in reply to markbenjamin57]

See! Two new things to do ,pill cutting and looking up your books!!

Actually my days usually last 15 hours or more...might have to stretch them to accommodate my new activities.

[markbenjamin57 in reply to Dewdrop456]

Careful now... remember the Spoons Theory with PMR / GCA?

[Dewdrop456 in reply to markbenjamin57]

I know and thanks for your concern but I only have two speeds ,fast and turbo.I actually feel really lucky,touch wood ,as I am able to work and go to a minimum of 6 exercise classes a week.As well as the rest of my daily responsibilities. I think that's why most of us find PMR so annoying as a lot of us all seem to be 'busy busy 'types of people who are used to getting on with things (usually several things at once ) and it goes against our natures to slow down.Sorry I'll stop talking now!

[markbenjamin57 in reply to Dewdrop456]

Good point about 'most of us seem to be busy types...' etc. I can relate as an Action Man 'type' too, and Us Humans are generally (but not always..?) programmed to be Active rather than Passive. But Fast or Turbo - only 2 speeds? (!) Maybe that's the challenge. What about Slow or Slower to survive and recover from PMR. That said, we are all different..

Either way: chronic illnesses like PMR inevitably slow us-down physically and mentally, like it or not - and whatever age. From personal experience (and also my Psychology studies) I think it's the more 'Action / Driven / Achiever' Personality Types who have greater difficulty in accepting and adapting to slowing-down a bit, compared with more relaxed / laid back Personality Types.

And.. there is some fairly reliable psychological research evidence out there that supports the theory that more 'Driven' Personality Types (typically described as 'Type A') tend to suffer more from what's known as Burn Out syndrome: i.e. Stress-related illness and Breakdown. Although the evidence is slim, I tend to agree with the theory: and from personal experience of driving myself too hard against the odds.

I've written here about how differing Personality Types might perceive, and adapt to / cope with these types of challenges (e.g. whilst 'pressing-on' regardless despite dealing with a chronic illness): and in one of the chapters of my (mainly silly) book. If you want to have a peek, it's listed on the PMRGCAuk website under 'Books about PMR and GCA' with a link to my book website. (N.b. this isn't intended as a promotion - only to signpost you to some more info on a controversial but regular topic here).

MB

[Dewdrop456 in reply to markbenjamin57]

Thank you. Yes it's all true and I do sometimes think I should slow down slightly but really who has the time ,certainly not me.The faster I go the more I can get done.Though I do know that I'm not the same now .

I remember saying to one of my friends ,when we were nurses in our twenties ,"You might as well save money on a holiday and sit by the bath under a sunlight!" As she used to go on holiday and sit by the pool all day and never sight see. Opposite to me needless to say . She took it well. I've always been like this . I will certainly read your book it sounds interesting and helpful. Thank you.

[Longtimer]

Well surely dropping from 2mg to nil, is no different really to me dropping 2mg from 8.5 where I am now....which is far too much....would you not be better still lowering carefully 0.5mg at a time....no hurry to first past the post is there....would hate for you to have to go much higher again if pain kicks in, which I have often read on here it can....even at such a low dose. Tortoise and hare remember!......I wish you well and remember, you have Tedski to look after...., and good luck...keep us posted on whatever you decide....

[markbenjamin57 in reply to Longtimer]

Well, maybe, Lt: the usual Rule of 'Don't drop by more than 10% of the previous periodic dose' should really apply at any level of Pred? See my latest Post for more...

[PMRpro Ambassador in reply to Longtimer]

I think it does - it is a higher percentage of the current dose and a relatively large drop.

[Longtimer in reply to PMRpro]

Sorry I must have been confused with MB posting......thought whatever mg we take we still have to reduce slowly at same rate as if at a higher dose...is that right?.....

I'm attempting to lower myself at the moment...maybe have Pred head...

[markbenjamin57 in reply to Longtimer]

No worry, Lt, it's easy to get confused about this one.

The Guiding Principle with Pred reductions is generally: 'No more than 10% reduction compared with the previous periodic dose'. E.g. at 10 mgpd (say, for a month): reduce to a minimum of 9 mgpd for another month - or until symptoms settle down. At 2 mgpd, reduce to 1.75 (approx.) mgpd - again until you get used to the drop, and so on. At the same time, Pred tapering isn't an exact science: and its success depends on many other things in context.

Of course, at these lower levels of reduction, the 10% increments get more tricky to measure - and that's where any or all of Pill Splitting / alternating daily dosages / the DSNS method come in.

The main (and sensible) idea is that, unless there are other medical reasons to do so, any PMR related Pred reduction is gradual, flexible and judged in terms of prevailing symptoms (or lack of).

Hope this helps..

[PMRpro Ambassador in reply to Longtimer]

Yes - but at the same rate should mean a similar percentage of the current dose and 10% is the figure the experts offer. 2mg at 10mg is 20% (already too high for comfort) but to go from 2mg to zero is 100%!

And MB wouldn't be the first to discover that 1mg every second day was still keeping symptoms at bay! It may not happen - but you never know until you did it slowly, stopped and then nothing reemerges ...

[Longtimer in reply to PMRpro]

Yes, I'm afraid I'm no good at explaining myself...I'll leave it to the experts in future......

[PMRpro Ambassador in reply to Longtimer]

No, not at all - it is the sort thing a lot of new people might think - doctors do all the time after all!!! And it gives an opportunity to mention it.

[11541stella]

Afraid I've no conclusive advice to give, but thank you so much for making me laugh over subjects (both brexit and prexit) that mainly make me want to cry

[Marijo1951 in reply to 11541stella]

Seconded!

[markbenjamin57 in reply to 11541stella]

I can't add much to that, stella...

[Asbeck]

Not an Auntie nor an expert--But there are 2.5 mg. tablets. You can cut one in half for 1.25 and then take 1/2 of one for a total dose of 1 and 3/4. Not such a precipitous drop--closer to 10%. Maybe less chance that the stress of the holidays will derail you As always thank you for your humor.

[markbenjamin57 in reply to Asbeck]

Very sensible advice Asbeck - thank you :-). And especially to adjust or maintain the current Preds to anticipate the demands of Xmas, Colder weather etc...

[Jackoh]

Perhaps you could pretend to leave off the pred, talk about doing it, tell us how wonderful its going to be but in actual fact do the opposite. Funny that reminds me of something else that's going on.....??!

[markbenjamin57 in reply to Jackoh]

Nice to see you on form Jackie - as always

[DorsetLady PMRGCAuk volunteer]

Marcus,

“I have previous form for this sort of thing!”

Yes we know..... so ask yourself a few simple questions -

Did it work last time around?

If not, then is it likely to work this time?

As winter draws on is it likely to be more or less successful?

With the festive season around the corner good or bad idea?

Should I leave or should I remain - well look at the mess and aggravation we’ve got into with leave - do YOU want a repeat performance? Another 2 years before you break with Pred?

As for consulting the Cabinet....NOOOOOOO.......be strong and stable man and listen to Auntie2...... you know she knows best!

If you jump from 2mg to zero you are in danger of losing any goodwill from the Cabinet (if there was any to start with especially as it’s from “over there”)

Should I be saying that with my Viking background?.......maybe not.

As you have fallen out with Tedski, you may need some help from somewhere closer to home. Maybe you should consider a soft Irish boarder who could be cajoled into bringing you a drop of the Black stuff, Irish stew and colcannon - sure much healthier for you than beef stroganoff and Vodka. Plus he/she may also provide a backstop for you, something you may need in your advancing years.

The way forward 2-1.5 -1-0.5-zero ....you know it makes sense!

P.s - send me details of your Nigerian bank account and I’ll see what I can do next pension day.

Freyja......Lady of Dorset.

[markbenjamin57 in reply to DorsetLady]

DL / Freya... I need a clear head to respond to that one in the appropriate comedic style, tone and depth. That said, I get your drift... x

[DorsetLady PMRGCAuk volunteer in reply to markbenjamin57]

No chance of a clear head this time of night!

Drift on......

[markbenjamin57 in reply to DorsetLady]

That's the spirit..

[Mks9558]

You might try part time work...- take every other day off? Is that something that is done?

Best of luck with your decision-

/mk

[markbenjamin57 in reply to Mks9558]

Thanks /mk - yes, another way of tapering the Preds which works for some of Us Lot

Good luck too..

[Suet3942]

Oh Uncle B.. I love reading your posts. PREXIT, priceless...

Now go and rescue Tedski from that park bench or you may find him in a sleeping bag with a can of beer clutched in his paw. !

[markbenjamin57 in reply to Suet3942]

Well Sue, only the pathetic product of a Pred-addled Mind? Sadly, Tedski's gone AWOL again. I think it's the scary prospect of possibly being appointed the 17th Prexit Minister in 2 weeks...?

[Suet3942 in reply to markbenjamin57]

😜😜😜

[coda123]

What about taking 1 mg and giving Tedski 1 mg (once you rescue the poor wee shivering creature)? Regarding your shameless bid for a loan, I checked my bank account and found 32,000,000,000 Pound sterling equals 54,024,304,348.80 Canadian Dollars. Just can't do it this month.. so sorry. Try your Dorset auntie again, she gives good advice and seems to have a soft spot for you.

[DorsetLady PMRGCAuk volunteer in reply to coda123]

Yes a bog in the middle of Ireland! Although Dartmoor would be nearer 😳

[PMRpro Ambassador in reply to DorsetLady]

Why make the Irish suffer?

[markbenjamin57 in reply to coda123]

What, coda?! Share the Preds with Tedski?! He'll only flog them on the black market as something else (e.g. powerful / mood altering). But hang on a minute, isn't that an accurate description of the Preds in the first place? Thanks for the offer of Funds. I'm on the case with 'Freya' in Dorset....

[DorsetLady PMRGCAuk volunteer in reply to markbenjamin57]

The only case you’re likely to be on is claret...although having just watched Ireland beat NZ at rugby perhaps it should be Guinness.

Sorry all Kiwis! Well no I’m not actually😉

[PMRpro Ambassador in reply to DorsetLady]

I have a very upset daughter - I pointed out that at least she hadn't spent a fortune on a ticket...

Ireland looking good for the 6 Nations again

[markbenjamin57 in reply to coda123]

Ok coda..

[Telian]

Seem to recall you've made the leap before and unsuccessfully too? Have another tipple and back to the boardroom before final decision. To assist with your financial request p'rhaps I'll not take my photo loyalties this month - you can keep the change! There will be interest to pay though, we'll agree on that at the next cabinet meeting...

[markbenjamin57 in reply to Telian]

Yep Terri. Late last year, and a very happy / comfortable several weeks of symptoms-free PMR despite Zero Pred. I remember it well - no pain, stiffness or fatigue, marvellous at the time! - even though the PMR symptoms crept back gradually.

But I wouldn't call my Leap (to Pred Club Zero..) unsuccessful as such. Maybe more an indicator / physiological feedback that I'd been a bit impatient. All the same (and despite re-joining The Pred Club - and all that goes with it - ha!), it reminded me how good it feels (physically and mentally, energy-wise), when the PMR goes into remission (if only temporarily) and / or you don't have to rely on the Preds to manage the symptoms.

The cheque's in the post for the photo royalties - thanks (I asked Tedski to post it). As for the next Cabinet Meeting..?

[Telian in reply to markbenjamin57]

Try a slower reduction (not sure how you reduced before) I'm sure you'll get there. ATB

[MamaBeagle]

As you make your decision - all the advice seems to be that if you crash out with a hard prexit, chaos will ensue and result in all sorts of pain, and suffering and any pred supply could be in short supply in she short term to relieve your problem unless of course you have been stockpiling. The only upside would be that you wouldn't need a £39 billion loan from DL and she wouldn't be dragging you off to an Irish bog!

[markbenjamin57 in reply to MamaBeagle]

Ha ha 'MB' (strange.. that's my Monika too). Well, ok: I give in. No Hard Prexit. No Pain. No, er, other Grief (esp from the Aunties). And, yes, no £39bn loan from DL or others. Better not comment on being (q.) 'dragged off to an Irish Bog' though. The Mind Boggles...?

[DorsetLady PMRGCAuk volunteer in reply to markbenjamin57]

Ahh...you should be so lucky!

[markbenjamin57 in reply to DorsetLady]

Ohhh...