First, thank you for accepting my rather hasty application for Temporary / Probationary Membership of PCZ. Well, to be more accurate, thank you for allowing me to barge-in recklessly, having not satisfied any of the usual application criteria: i.e. to take several months or years to make a graceful exit from my membership of your sister organisation The Pred Club (TPC) and ensure a seamless transition from one to the other via the often tortuous process of reducing the Preds by miniscule amounts. Before you say it - yes, I am often like the proverbial bull in a china shop, but I do have previous form for these types of things. ;-)
That said, HERE I AM! - for better or worse. From my side, my 7-day PCZ Trial Membership has gone well, so far. Zero Preds, and zero increase in PMR symptoms - or at least no worse than at my previous 4 mgpd whilst a member of the esteemed TPC. Yes, low-level PMR symptoms prevail (a little morning pain and stiffness), but at a tolerable level for me at least. And.. all of this despite having had a relatively busy and active week doing typical MB ‘Action Man’ things like cleaning the Limo, doing DIY projects, wrestling with alligators, picking fights with Teddy and his mates, and tearing 50 metre-high oak trees out of the ground with my bare hands (Warning, do NOT try this if you have PMR and / or GCA - or even if not. It's not sensible or clever).
But I digress. My main reason for writing to you is to confirm my intention to become a Permanent Member of PCZ if all goes well. However, I would like to make a Special Request around this, as follows:
To be honest, although a reluctant member of The Pred Club from the start, I actually became quite fond of the other unfortunate but hardy and spirited PMR and GCA afflicted souls whose company I have enjoyed for 3 long years. They are generally a Nice, Kind and Thoughtful Lot and helped me immensely on my often unpredictable PMR / Pred Journey with their knowledge, wisdom and good humour. They even laughed at my silly ramblings (a sure sign of Bonkers-ness), and more besides.
So, this is my Special Request: I wish to retain my membership of The Pred Club at the same time as (hopefully) establishing myself as a permanent member of Pred Club Zero. I know you will consider this to be unusual, and possibly representing a Conflict of Interests on all sides. But, as you might appreciate, we must get to know each other slowly and surely if our new relationship is to stand the Test of Time.
Also, I want to be careful NOT to be seen to 'walk away into the Zero Pred Sunset' by my trusty (if sometimes Bonkers) ‘old’ Pals in The Pred Club who have warned me in no uncertain terms (q): ‘Ha, MB, you might be back!’. I am not a person who reneges or turns their back on past relationships of Goodwill and Trust. More important, perhaps, That Pred Club Lot are very likely to tease me unmercifully if I do - and subsequently return with my tail between my legs and asking for Forgiveness.
Further to the above, The PMRGCA Aunties, especially, are known for their razor-sharp wit and a ‘We told You So’ response to those of Us Pred Lot who think we know better - and subsequently are proved not to. Such humiliation would be a step too far for my delicate and sensitive psyche to bear. Teddy will be smirking too, since he will have all the more reason to profiteer from my ignominious return to a 'vulnerable' state. Teddy is smart and knows how to exploit an Opportunity - I blame his obscure and murky origins, about which I know little. All I will say is, I know his real name is 'Tedski'.... his strange accent and those piercing ice-blue eyes say it all...
So, in conclusion: I do not want to be perceived as being either ‘One of Them’ or ‘One of Us’ by either The Pred Club (TPC) or Pred Club Zero (PCZ). I am not ‘One of Them’ (no smutty innuendos please), I reserve the right to Swing Both Ways (careful now, I know how some of your mischievous Minds work), and I intend to keep a Foot in both Camps (stop it…!) until or unless I am confident about my ultimate place in these things.
Finally, all I would ask is: how would you advise me in terms of how to get used to the idea that I can function as closely to what I vaguely remember as 'Normal' (whatever that means) in the sudden absence of my 3-year-long daily ritual of taking, and also walking the physiological and psychological tightrope of Pred tapering? This is one of the most confusing (if enjoyable) aspects of joining Pred Club Zero, and I would appreciate your advice accordingly.
In the meantime, and in whichever category I (or any of Us Lot on either side) fall, try to keep smiling on the Journey - it can only help
Yours in appreciation
'Uncle' MB
Double Agent for TPC and PCZ - but don't tell anyone or I will be (q.) 'Toast' according to Teddy
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markbenjamin57
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Well all I can say is that life wouldn't be the same if you went off into the sunset. Besides, we need to know what goes on in Club Zero. It's like having a spy in enemy camp. Keep those missives coming!
Thanks kat :-). Don't worry, no intention of racing off anywhere! I know Club Zero brings no guarantees and it can take some time to adjust to the new 'Normal.. ;-). I'll still be here with updates from 'the other side'..
Not sure that I see myself as “one of them” or even “one of us” - or even a secret agent, more of a “floating voter”- totally even-handed! As you know I happy to tell anyone if they’re being an idiot!
I still remember what being “one of us” felt like, and although I might one be “one of them” now, I’m very much aware that I could become one ‘one of us’ again!
My advice - much the same as always - take each day as it comes, and hope tomorrow will be better!
Welcome Mark to Club Zero and may it last forever.
Now, you once said, goodbye to the Mark you knew 3 years ago and then learned to march to a different drummer in your new unwanted journey which played a different tune.
You are embarking on a 'new' life, but remember it is not the one you knew before those 3 years.
You are now walking on 'un Kent Ground' and until you learn about the new and different journey, not the one you want to really go back too, the one you lived with for a long time, it is just not possible, three years have passed.
Remember when born:
you had to learn and it was small steps and you stumbled and fell many times;
then with PMR you had to learn and again it was small steps;
once again you are starting over and you have to learn.
So take your time and enjoy the new process and just remember 'Tortoise'.
I agree, 3 years have passed and my life has moved forwards in a way I didn't expect. A (big!) tap on the shoulder from PMR that I'm not invulnerable and getting a little older. But without this community things would have seemed much worse
So glad you are staying, really rooting for you unlike Tedski, we are not looking for signs of weakness. You can give us bulletins from Pred Club Zero to encourage us Pred-bound. Especially any nice things you notice, like an intellect or remembering why you went upstairs or ignoring the biscuit barrel/ cookie jar.
Ha Jane, how could I abandon You lovely Lot? It would be like losing a part of myself! ;-). Yep, I look forward to exploring the previously uncharted (for me) territory and wonders of PCZ. More updates to follow..
As for Tedski, he's not a bad type really - just a bit of an opportunist. I blame the fact that he lived in a cardboard box at the side of the Brest-Litovsk Highway before applying for his job here..
I'm a little suspicious of your Teddy. Is he Russian and had he slipped of to Salisbury recently? Just mildly curious. And well done for reaching PredZero. 👍👍👍
Thanks granny :-). As for 'Teddy / Tedski': yes, I believe he has Eastern European origins. But I never let him out of my sight, so I doubt if he was involved - unless he has a Body Double...?
Thanks Patience. Yep, I'll still be making a nuisance of myself with You Lot for some time to come. I don't like to miss out on a bit of fun!
Congratulations Mark, long may it last ! For me however I have returned to 5mg/day from 4mg due to my increased DIY activity biting me in the bum so to speak.
Thanks Pete. To be honest, I'm still reeling (but nicely) from being able to drop from 4 mgpd Pred to Zero so easily and instantly after loitering around from 10 to 4 for about a year. As always, DO NOT TRY THIS AT HOME! Maybe, just maybe it's a combination of the PMR activity waning of its own accord, being relatively young, a bloke, my previous fitness, and who knows what else? Either way, I'm cautiously optimistic but not intending to push things activity-wise in the meantime.
From experience, keep steady at 4/5 mgpd until or unless you feel that you can reduce a bit.
Thanks Mark, no rush to get lower than 5mg at moment. I got to 4mg before I started updating the kitchen and was finding after two weeks at that dose that I was developing a few more pains. So even before I attempted a DIY project 4mg was too low a dose at the moment. The kitchen project confirmed it. At 5mg I'm fairly pain free.
Have fun with your new freedom, but watch out for the Bogee Man.
That's sensible Pete, go at your own pace and I'm sure you'll manage to nudge downwards over time, and when you feel ready. And, of course, you're at a relatively low Pred dose now (< 5mgpd), so it's not all bad news and all the more reason not to rush things.
I'm sure that, even when / if we reach the elusive Pred Club Zero, there's still quite a long process to endure in terms of the body (Adrenal function / HPA Axis set-up?) gradually getting back into some kind of equilibrium after what is in fact quite a long and serious illness - even if the worst symptoms have been controlled by the steroids. The Aunties rattle on about this frequently - and quite rightly
Also, I have a hunch that PMR 'symptoms pain tolerance' will vary from one person to another. I.e. some of us will have a higher / lower ability to tolerate PMR symptoms in parallel with the actual dose at any time.
My conclusion? There SO many variables with PMR (not to mention GCA) in terms of trying to manage the disease course and process. And, many of them seem more a matter of judgement than science... but that's only my opinion
ONLY 3 years? You have been fortunate. Only those already in Club Zero can advise you on the way forward. Enjoy, be kind to Teddy, look forward, not to what was. All the best.
Thanks karools. Yes, I've probably got off lightly relative to many PMR / GCA sufferers. I agree about looking forwards, although the experience of these things doesn't fade quickly and it does leave you a little cautious about the future... hey ho.
As for Pred Club Zero - I'm not sure if there is a community forum for this! So I'll be hanging around with You Lot and sharing experiences for some time to come
Thank Piers As I've always said, for me at least, the DF (Deathly Fatigue) has been the worst aspect of PMR and the Pred Journey physically and mentally. That said, I've picked up on a few people here who report that the DF subsides as you emerge from the PMR tunnel.
Thanks PMRpro. Yep, I'm very aware of still being vulnerable with PMR / a chronic AI illness despite a sudden breakthrough with the (no) Preds. My GP is very interested in the recent developments and suggested in-depth blood tests in view of this and a pattern of AI-related disorders over the years (Viral Myocrditis, Palmoplantar, Bacterial Pneumonia etc) despite no family history of such things. We'll see...
Thanks. I’m much better on the journey! At 9 mgs. Pred, gained a few pounds, which I needed and have more energy. 10 months in and I’m adjusting to new normal, thanks to support and laughter from forum friends!
What wonderful news! So excited for you! I bet it does feel weird to get up in the morning, go to take meds and think ‘what dose am I on?’ only to remember the answer is ‘oh yeah - NONE!’ That has to make you smile.
Just like AA/12-step groups, we need you folks that have gone into remission. You have the experience and knowledge that we desperately need you to share. And you are our inspiration and cheerleaders. (And, in your case, resident comedian.).
Yep, it still feels astonishing after a week of Zero Preds, after 3 years (and having gone from 4 mgpd to zero overnight - NOT recommended). I keep looking at my stock of Pred (with me at all times just in case) and thinking: 'Wow, I don't need this medicine - for now at least!'
As mentioned, my intention was just to delay my Pred dose from the evening to the following morning (12 hours) to see if it made any difference. But since there was no difference in symptoms (pain, stiffness etc) I pushed it forward another 12 hours, and so on - but with great trepidation in case of some nasty 'kickback' from the Adrenal 'Guyz' (they aren't to be messed with..)
In some respects, not much other change at Zero. Still some low level symptoms but quite tolerable and fading during the day. Similarly with energy levels, possibly feeling slightly better all round 'off' the Preds rather than on them. Food for thought...?
Maybe more significant(?) a relative absence of the DF (Deathly Fatigue) that has dogged me on my PMR Journey (and, as I understand from others here, is common). And, of course, the psychological Boost from feeling that I've maybe turned a corner with this nasty illness. That in itself has to be powerful therapeutically..
No worry, I'm not totally out of the woods yet. And, yes, sharing some good news is hopefully helpful to others here in terms of giving some Hope that things CAN get better.
Now the BAD news: with more mental energy, the Chuckle Muscles will probably be very active. So watch out You Lot... more Mirth to follow
Laughing - thanks for the warning that your chuckle muscle might be (further) awoken. (Is it related to your adrenals?) I’ll make sure to buckle-up (tighter) before I start to read your writings.
:-). As my comedy Hero and Word Mangler, the late 'Professor' Stanley Unwin would say:
"When reducingly the cortlodes on the Deadly Slowly Nearly Stoppy methodful, it is commonly to experience symptoles such as deadlyful dire and tiredly, extreme frazzlyness and emoty feelies such as glumly, sadly, badly and greatly ungladly (or even madly)".
"These symptoles can last from a few hourlies to several dahlias and nightshades, and the best adviceful is to resty-resty muchlope flaloppy and do soothyful hobbits such as quietful knittingly - or even pre-meditated.
The goodly, uppy news is that, for manyful PMR sufferlies, the jangleful, sadly badly experilodes will eventually submingle to those of a more brightly, smiley happilode - and excitey thinkies about getting back to normlode (whatever that is when it's at homely!)".
If you have the time (and energy) to trawl through my various, mainly silly Posts here during the past couple of years, you'll find a couple more 'Professor Stanley Unwin'- style ones. 'Prof' Stan's quirky humour and word-mangling was, and still is a great inspiration to me too!
There are also a couple of chapters in my book 'Write Me Funny, Ramblings On The Lighter Side of PMR and GCA..' which are attributed to the late and great Stanley Unwin.
Maybe you answered this in your previous post but when did you start feeling normal? While still at 4/5 or after you were off? When did your brain return? I miss my brain almost more than my physical self! I think it's still here somewhere. I dropped straight from 7 to 6 just to see and no problems. I believe I am thinking BOLD 😊
bunnymom, I think the confusing / subjective bit is getting a reliable reference point on what 'Normal' is - especially with a chronic illness where we psychologically adapt to a new 'Normal' in order to survive it, and possibly forget how we felt pre-illness. I don't know, only my thoughts..
So many of Us Lot here talk about the mental / psychological / emotional collateral damage from PMR / GCA and / or the powerful Preds (or similar) that manage the symptoms.
All I can say from personal experience is that, having learned to roll-with the worst of either PMR symptoms or Pred side-effects (or both at once), when they subside, the difference is Night and Day.
Yep, think BOLD.... but not RECKLESS? Caution should Rule with PMR / GCA and all that goes with it
But PLEASE ALL (triple underlined!) don't try to follow my example - I nearly didn't Post about it here for fear that it might send the wrong message and encourage some of You / Us Lot to do the same. Maybe my experience is exceptional for reasons which are still a bit of a mystery to me, but I thought it might just give some Hope to others that you / we can slowly (or in my case, rapidly!) emerge from the end of the PMR / Pred tunnel at some point.
I stick by, and endorse all I have learned in this great community about the wisdom and safety of SLOW Pred tapering (e.g. DSNS), for good reasons - even at lower dosages (e.g. < 7.5 mgpd). My take on this is that the risks of reducing the Preds too fast and / or by too much outweigh the benefits in most cases. I'm sure The Aunties will have a lot to say about this...
That said, and as I have experienced twice now, maybe some of Us Lot can in fact accelerate the reduction / tapering process depending on our individual health circumstances and context?
I do say repeatedly - you can reduce at ANY rate if it works for you! When a reduction approach doesn't work for you then you have to think again. You have been at a fairly low dose on and off for a while - and your adrenal function has probably woken up during that time. If the PMR has gone and the adrenal glands are working - what more do you want?
Thanks PMRpro - I'll drink to that! (he says, gently glugging the dry red stuff with a confused-looking Tedski at his side) :-D.
I don't know about the PMR having 'gone' as such - does it ever if you have an AI vulnerability? But it DOES feel like the PMR disease activity has decided to give me a break, or is starting to burn itself out (self-limit) at long last.
Day by day I'm feeling better at Pred Club Zero, and hopefully more of the same. So that's good enough for me
The propensity never goes - but it can go into permanent remission. And that can happen overnihgt - just as PMR can appear overnight for some people. Just hope it doesn't wake up...
Thanks PMRpro. That's interesting - especially what you say about PMR disease activity / symptoms possibly also going into remission overnight - in the same way that they often manifest themselves 'overnight' (as often seems to be the case?).
Congratulations 🍾 on reaching pred 0. Must be a wonderful feeling and one that I am certainly looking forward to. Hope you continue to be symptom free & enjoy a long pred free future.
Well, I think 'cautiously wonderful' is the best description - still pinching myself about having made the VERY ambitious (and possibly risky) step of jumping-off the Pred cliff from 4mgpd to Zero in one go -and still feeling pretty good.
Thanks for your lovely thoughts - I'll keep you all posted on my progress (or not!)
Congratulations! How exciting. I hope you stick around to offer advice and keep us non Brits trying to figure out what the heck you are trying to say lol 😂
Yes, I've come to realise that our often obscure / ironic 'Brit' humour and my references to it might be confusing to some non-Brits in a fast-expanding international community. Ohhh..!
But rest assured, I'll always try to explain the linguistic context and intentions behind any Humorous (allegedly) stuff I write here. The main thing is, I just want to help You / Us Lot to smile in between the tough bits of PMR and GCA.
Thanks again for being in touch. And, yes, I'll stick around here (like it or not!).
Finally got round to a replying! Congratulations, and "well done" for getting down to zero!!!
To be totally honest, I am really jealous of you - starting off shortly after me, and beating me to the finishing post by ??? who knows how long. Anyway, I am very pleased for you, and hope there are no comebacks.
Am down to 4.5mg now, and am paying for doing too much gardening yesterday; the weather was just so good.
Good luck, and I have xpecting to continue to see your posts.
Many thanks! To be honest, a bit of a surprise to do the Pred tapering equivalent of an Emergency Stop (i.e. from 4 to zero in 24 hours - n.b. NOT recommended!). But so far, so good, although it does feel (nicely) weird not to be dependent on those little white tabs every day!
But as the Aunties / experts say, joining Club Zero doesn't come with any guarantees - and it's also likely to take several months for the Adrenal / HPA Axis stuff to get back into balance.
So, many of the same Rules apply as in pre-Club Zero: don't overdo things physically, avoid excessive Stress, remember I am not Superman (huggghhh), regular reminders to self that I have had a serious illness for 3 years, and of course I'm a bit older now.
You seem to be doing ok at 4.5 and keeping active, let's all hope for a nice warm Summer which has to be good for PMR!
Wow Mark. Seems like you have broken all the rules, and are getting away with it -at least I hope you are. Don't know what the "aunties" say about such a reduction, but we can both guess!
Anyway, good luck, and long may it last. The good thing is that you certainly have your eyes open.
I'm sure that for many of us, (hopefully) the last bit of the tapering journey, i.e. < say 4mgpd, can be the most frustrating one physiologically and psychologically because we seem to be nearly out of a very long tunnel, but possibly aren't yet.
That said, it's nice to share good news as encouragement for others here - but without appearing to show off!
As PMRpro says, for some of Us Lot, a faster than usually recommended Pred taper might (and I stress, MIGHT) work, depending on our context. But, of course, Symptoms Rule either way, and we are all different..
Keep positive, and keep looking for that light - it's there somewhere
That is amazing news, walk on into the 'Zero Pred Sunset' but return again often at 'Zero Pred Daybreak' with your amazing wit, comical and heart warming contributions. You have cerntainly helped to make my PMR journey more bearable, and I thank you for that.
But now the BAD news: don't think for a minute that I'm going to stop terrorising You Lot with a regular barrage of semi-deranged ramblings, schoolboy humour, Beano style jokes and assorted inane drivel. I see it as my new vocation - and, in any case, I haven't got anything better to do nowadays.
I have a question for you Club 0 members or close to becoming one. As one reduces the prednisone (4.5) does the swelling in the feet & ankles improve? And is it still a good idea to wear anti embolism stockings on a long plane ride if they’re swollen?
And Mark, no worries, I’m all for the slow bit, but you do have a way with words
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