Ok You Lot - THIS SILLINESS MUST STOP!!! (triple underlined if I knew how to do it..)
Following my recent post and heartfelt accolade to the Aunties here, a few of you have immediately seized on the opportunity to label me with the rather dubious title of the PMRGCAuk forum's 'Uncle' - presumably in an effort to elevate me to a similar status?
But I have you all sussed. It's only a vain attempt to create some Gender Equality here following the events in the UK's BBC news this week about differential Pay Scales between their M / F 'Celebrities'?
So, this is to put you all on Formal Notice of the following:
1. I have no wish to divert people's attention from the far more serious and important content here - neither should You Lot.
2. I don't get paid for writing this stuff in the first place, I just do it out of a sense of altruism (if you believe that, you'll believe anything).
3. I am not currently, and do not intend at any time in the future to adopt the persona of an 'Uncle' of whatever kind to You Lot, even if to satisfy your bizarre fantasies about me. (That said, I am an uncle to 4 lovely nieces in my 'real' life - bless..!).
4. The last time I wore a cardigan and slippers was in 1974 during a drunken night-out with some school mates when I foolishly attempted to do an impression of Winston Churchill in the main fountain at London's Hyde Park Square to about two thousand eager tourists - and got myself arrested by the Old Bill as a result. But that's all in the past now...
5. I am NOT a Werther's Original addict, nor am I dribbly, bumbling and nostalgia-obsessed fan of the past. All I can say is: Nostalgia isn't what it used to be...
6. If the Site Administrators are following and object to this Post: I've been thrown-out of better places than this in my time. If you chuck me out as a result of this post, things can only get better for all of us...
7. If any of You Lot are questioning my mental health as a result of my posts here: Yes, I DO know about, and have read DSM-V (the American Psychiatric Association's 'bible' of Mental Health Disorders) from cover to cover, but still can't find a classification or recommended treatment for BS (Bonkers Silliness). My conclusion? Better to read the Beano comic (more grins) or, better still, read the current news about political shenanigans in certain countries in the Western World (better not say about who, what, or which for fear of assassination attempts). I rest my case.
My main worry is that You Lot are conspiring to plunge me into an Identity Crisis, as if the Mid-Life Crisis isn't enough to contend with - what are you like?!
But my other concern is that you continue to inflict this Mirth on yourselves co-laterally, by encouraging me to come-up with more of this nonsense :-(. Are you all Pred-induced masochists, or what?!
That said, and to give you the benefit of the doubt (and in an un-characteristic 'Kind Uncle' mode): I just see you as a bunch of Tutti-Frutti-fuelled, Behaviourally 'Naughty' infants in an un-supervised playground punch-up - egging-each other (and me) on in a spirit of 'Upping the Ante' and waiting in the wings for the Action. Enough said.
And, as always, haven't you all got better things to do (Aunties included...)?
Keep smiling and thanks for joining-in with the fun, as always. As they say, 'It takes two (or more?!) to Tango'
Happy Days and best wishes to you all
MB
Written by
markbenjamin57
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I live in Idle - there's an Idle Working Men's Club. I think the late Richard Whiteley was an honorary member - Michael jackson too! Maybe we should nominate you for membership, Mark?
Have no fear Benjamin, some of us are never likely to let you get above your station!
We certainly don't want any of your Tango "tales", thank you very much! The initials may be the same, but I'll hazard a guess you're no Marlon Brando. Have you been watching Loose Women again - heaven forbid 🙈
If I wasn't so tired I'd come up with something cute to say....but alas, it is past time for proper humour. I have a feeling I might be having strange dreams as it is after your recent uncle antics. Or would that be the prednisolone??? Anyway, stay exactly as you are Mark. We love you!
That's great! I'm at 4mg too. I'm on vacation at the moment so will stay on this dose for another week or so because I'm doing a lot of walking and swimming and a bit more tired than usual.
Good idea Marie, it's easy to over-do things when you feel a bit better. I did a lot of house decorating last week (lifting, bending, stretching etc) and needed a couple of days afterwards for my body to catch up.
MB - it's early, I can't find my glasses... What's all this about Upping the Auntie? Have you invented something new?! I'm going back to bed - to dream of PMRP..... zzzzzzz
Mark - my memory isn't what it was - even then, it was pretty poor - what's your current state of play re: Pred?
I'm wrestling with the DSNS, currently at 5.5mg, soon to go to 5.0mg - did you say that you were able to accelerate the drop at this level - or was I actually dreaming - about the wretched condition (rather than anything associated I mean)?
Speaking of the DSNS - I tried to explain it to someone the other day - I didn't succeed.........
Sorry this is a bit long-winded but hope it helps...
I struggled to get below around 6mgpd for about 6 months, with continuing low-level pain, stiffness and regular DF (Deathly Fatigue). Was pretty fed-up with it so increased to 7.5 for a few weeks but actually felt worse (all of the above but + feeling woozy, slightly nauseous too). Even more fed-up, and with a sneaking suspicion that the side-effects of the (increased) preds were worse than the symptoms of the PMR!
So, I thought s*d it and tried an overnight drop to 5mgpd (30-ish% - not usually recommended) to see what would happen. Result? Sudden, miraculous and continuing relief from nearly all of the symptoms, and so I stayed on 5. At the same time, I contacted my Rheumy to ask his advice. He suggested that the PMR had / has gone into remission (partly or totally, after 2-ish years) and so to immediately drop further to 4mgpd and 1mg per month after that, but if 'Relapse related symptoms' return to slow down the reductions a bit.
I'm now holding steady on 4mgpd, feeling pretty good all round, and with only mild PMR symptoms / fatigue etc even though I've been doing a lot more physically.
The Aunties here seemed to think that a couple of things have happened simultaneously: a), the PMR has eased-off a bit (or a lot) and b), the adrenal department is getting back to normal-ish functioning. Either way, the improvement has been quite sudden, dramatic and sustained. Phew..!
It might (and I stress, might) be that the 2 events above mean that I can be more adventurous with the tapering gradient than recommended in DSNS so I'm going to reduce again to 3mgpd (another, whopping 25%) next week for a further 4 weeks and keep my fingers crossed. If I experience a flare I'll slow down a bit or just stay on a plateau for a while.
Yes, DSNS is acknowledged to reduce the risk, incidence and severity of flares, and makes a lot of sense for most PMR (and especially GCA) patients. But I can't help thinking that, with even the best of tapering methods, there is still a big element of trial and error in the process. And, of course, PMR has a mind of its own, regardless.
At the same time, a few of us seem to be fortunate in being able to reduce by more, more quickly - even at the lower, more critical levels of Preds (i.e. <7.5mgpd). Maybe this more likely to be achievable when / if the PMR is subsiding and / or the adrenals are getting their act together again?
So, it's over to you to decide how to proceed, I think!
Hey! We resemble that "political shenanigans" remark. Californians did our best to stop that runaway train, but some people just took the bait, line, and s(t)inker. Many of us are also reading the DSRM manual, wondering if anyone in power is keeping score. Ugh ... And I know stress is bad for PMR ...
Hey too, cctraveler! Greetings to you from here in the UK.
Thank you for your brief reply to my post. Maybe a few things have been 'lost in translation' here (i.e. between American-English and British-English, and vice versa)?!
First, I'm sorry but I don't understand your reference to (q.) 'resemble..' etc. In British-English, the word 'resemble' typically means 'similar to'. In American-English, I think this term perhaps means 'resent' (i.e. to take offence to..)? If so, I apologise for any mis-understanding between us.
My use of the term 'shenanigans' in my post is intended to light-heartedly refer to 'mischievous behaviour' in general: but with no inferences as to political propriety or otherwise and in any context, whether in American or English politics. In British-English, the term 'shenanigans' is usually interpreted as 'naughty' more than anything else. I do not have a view one way or another on the relative propriety and integrity of the UK's, USA's, or any other country's political system - it's all too complicated for me to fathom.
As for the 'DSRM' manual that you mention: I'm sorry, I have no knowledge of this. I refer to 'DSM-V' in my post: again, in a humorous context within the main body of the content.
I can only assume that we have some linguistic and / or cultural crossed-wires (i.e mis-understandings) here too? Again, and if so, I apologise.
Either way, I agree with you - Stress is bad for PMR, regardless of our nationality or language. Maybe that's the main 'takeaway' from this conversation....?
I guess I needed a couple of smileys at the end of my reply. No offense taken; on the contrary, your posts are a bright spot in my day. The "resembling a remark" means that we don't resent it, but it may, in fact, be too spot-on for comfort -- thus, a joke. And calling the actions of our elected person in charge (I can't bring myself to use the "P" word) "shenanigans" is kind at best.
I may have the name of the manual wrong. I was thinking of the big manual of psychiatric disorders, which we jokingly refer to as the afore-mentioned person's playbook. Curious, isn't it, how differently we use the English tongue. I shouldn't attempt across-the-pond humor, I guess. Even across the US, we Californians are sometimes considered the strange ones (can you believe it?). I like to think we're the sensible, thoughtful, balanced Americans. (Insert a couple of smileys here -- I don't know how.)
I know what you mean about British vs American English. There's an old saying: 'England and America, two nations divided by a common language' (or something similar). I'm always aware of this when I start playing with words in my posts, and worry that non-Native English speakers (of any nationality) might think I'm a bit eccentric!
Funnily enough, us Brits are adopting quite a few Americanisms too. The term 'Message me' comes to mind, where the noun is used as a verb.
As for politics (in the UK or the US), I'd better not express an opinion as I know it's a controversial topic and don't want to get myself thrown off the forum. All I can say is that I agree with you, and 'you couldn't make this stuff up'. I like your reference to DSM being a certain person's playbook.. lovely!
Yes, that 'big' manual is DSM. Again, I'd better not express an opinion or I'll have a few psychiatrists on my back..
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What's my next step?
Pain below buttocks both sides. Rheumatologist says could be from PMR but who knows. 
