The Lighter Side: Classified Report from Zero Pred Double Agent 'Benjski'... ;-)

[markbenjamin57]

Greetings All

Just a quick-ish update from Benjski Mansions. 'MB...Quick-ish...?!' I can hear you groaning already...

Ok, here goes (Disclaimer: Do Not Try This at Home):

It's exactly 4 weeks since my ambitious (or as some of you might say, reckless) reduction from 4mgpd Preds to Zero by a cunning strategy of progressively delaying my Pred 'fixes' with a cautious 'see how it goes' approach, day by day.

The good-ish news: So far, so good with my provisional / probationary membership of PCZ (Pred Club Zero). First, I am still alive and have not succumbed to an Adrenal Crisis (NOT advised) nor endured any significant Pred withdrawal effects other than those that many of Us Lot typically report, at whatever stage in the tapering process from 20mgpd to even 2mgpd.

Yep, some usual but tolerable low-level morning pain and stiffness and fatigue which must mean that the PMR inflammatory stuff is still lurking around. Boo... :-(. But not so much of the Deathly Fatigue, and feeling incrementally better at Zero, day by day. Still the daily Snakes and Ladders oscillation energy-wise (+/-), but with fewer highs and lows (if you get my drift?).

My Conclusion? I can now cope / function reasonably well at Zero Pred (at last - after 3 long years!). And, although far from 'recovered' from PMR / it having gone into remission, it's encouraging to think that I'm not dependent on the Preds - for now at least. Psychologically, that's a massive boost to the 'system', as I'm sure you will understand.

That said, my main message to You / Us Lot is:

Although I've pushed the boundaries / broken the Rules around the best recommended Pred tapering regimens and got away with it (Ha - Story of my Life!), this is only my experience. Please don't follow my lead unless you are confident about doing so and / or with the (hopefully trusted) advice of your Medics - and in your own Health Context and Circumstances.

I still concur with the Aunties and other experts here that SLOW Pred tapering (e.g. DSNS or its equivalents) is the Best Advice so as to avoid or at least minimise the nasty side-effects of reducing the Preds by too much and / or too quickly. So, Caution should always Rule in the PMR / GCA / Pred reduction equation, for many of us.

On the Positive Side:

Yes, many of us CAN and probably will reach the Goal of the elusive Pred Club Zero-ish with patience and care. But, as I well-know, we have to give it time and learn to roll-with the tough bits along the way.

But, probably the more important Goal is to emotionally survive and cope on the long and often unpredictable Journey either to Pred Club Zero and / or Remission from these truly nasty and Life Changing illnesses. And, if not recovering or likely to recover fully, we still have to learn to survive and cope with whatever Life and Illness throws at us. That's my 'take' on things, for better or worse.

Now, where's Teddy (Tedski)..? Ah, yes, he's out-on-the-town having borrowed my treasured Limo to impress his new girlfriend 'Olesia'. I wish them well, so long as I get the Limo back intact at the end of the evening. We'll see..

Try to keep smiling on the PMR / GCA / Pred Journey

'Uncle' MB

[allykat]

That's encouraging news Mark and long may it continue. There is hope for us all. Very pleased for you!

[markbenjamin57 in reply to allykat]

Thanks kat, although I'm keeping an open mind since we can still go backwards in the process even at Zero...

[Insight329]

Thrilled for you!!!! Hope each day brings you closer to bouncing out of bed without a pain in your head. (If I ever get to the UK, I'd like to borrow that limo.)

[markbenjamin57 in reply to Insight329]

Thanks Joy :-). Well, not exactly bouncing out of bed yet, but at least not taking 10 minutes to crawl / slide / tumble out sideways like at first! It's a deal for the Limo...

[Mitziecat]

So please that it is going well for you. Very encouraging and long may it continue.

[markbenjamin57 in reply to Mitziecat]

Thanks Mitzie I'm not trying to be downbeat but, as mentioned to the others, it's still early days even at Zero. But fingers crossed...

[Sandradsn]

That's great Mark! Does the morning pain wear off by the afternoon?

I've been on 5mg since Jan,upped it from 1mg as in lots of pain.Sunday I took a 1mg instead of a 5mg accidently.On Monday morning I was aching a lot but it wore off.I'm thinking of dropping to 4mg to see what happens.

[markbenjamin57 in reply to Sandradsn]

Hi Sandra. Yep, the daily cycle of pain / stiffness / fatigue is the same as always, just the amplification +/- (if you get my drift?). Even now (at Zero), the pain etc is sometimes 'louder' than at other times - and for no obvious reason. So confusing..! Yep, you could try a cautious drop to 4 and hold your breath...(or not..)?! But that's only my (non-expert) opinion...

[SheffieldJane]

This is so heartening to hear about and even the deathly fatigue is receding! It must be like riding a bike without stabilisers. I can imagine that giving you a huge psychological boost even though your limo has clearly been nicked.

[Patience47 in reply to SheffieldJane]

So very happy for you, Mark. Thanks for update.

[markbenjamin57 in reply to Patience47]

Thanks Patience It's not intended to brag about my progress - more to inform and (hopefully) inspire others of You Lot that there can be positive progress in the long and often un-predictable PMR / GCA Journey.

[Patience47 in reply to markbenjamin57]

Mark, you do inspire and give hope. I appreciate your updates, and hope you will continue with them. Oh, I certainly enjoy the humor you bring as that always makes for a happier day. 😃

[markbenjamin57 in reply to SheffieldJane]

Thanks J Well, yes and no. Yes, it's good psychologically to be 'off' the Preds (well, effectively). On the other hand, once OFF them there isn't the same sudden 'miraculous' improvement that you have when you go ON them at first, and you might expect, (but in reverse - if that makes sense?!).

As mentioned to Sandra, the best way I can describe it is that the amplification ('loudness / strength') of the symptoms decreases overall - but only incrementally. And.. it can still oscillate up and down. So frustrating, but I guess going the right way generally.

As for the Limo / Tedski.. he's been micro-chipped and the Limo has a sophisticated Tracker device. So the Old Bill shouldn't have any probs finding them if they don't report for business as usual tonight

But hang on a minute...! A Limo like mine (gold plated, blacked-out windows, private reg number etc etc) is pulling-up outside my front door. Ohh, false alarm - it's my Plumber coming to fix the boiler...

[SheffieldJane in reply to markbenjamin57]

😂. Yes you kind of expect it to be like a high, but it’s just same old you with aches and pains and very aware that tempus fugit . I suppose work on fitness has to commence. Sigh!

[markbenjamin57 in reply to SheffieldJane]

Yep Jane. Looking back over 3 years of PMR, I agree. Back to more-or-less previous levels of fitness hopefully, but slowly does it. I think I'm fortunate overall because I've tried to keep fairly active throughout ('business as usual' etc) - but am aware that I've pushed myself a bit harder in the PMR context.

[Sandy1947]

Glad your progress continues.

[markbenjamin57 in reply to Sandy1947]

Thanks Sandy, 'cautiously optimistic' How are you...?

[Sandy1947 in reply to markbenjamin57]

Doing well, thanks! Sold my business, exploring new activities, lots of dates, many one and done, enjoying my charity...distributing prom gowns and scholarships to girls in urban areas! It will be a year since diagnosis. On 8mg of Pred so quite pleased with progress. I feel used to PMR and able to live life comfortably. I had a pulled hamstring for 2 weeks so no Zumba, just weights. Going to the city (NYC) for a few days so I’ll simply walk and explore. My 13 year old dog is failing so I am sad about her temporary status on the planet. I push her in a carriage since she’s blind, has arthritis and loves to be out and about!

I appreciate your lightness and mirth!

[jinasc]

"Yep, some usual but tolerable low-level morning pain and stiffness and fatigue which must mean that the PMR inflammatory stuff is still lurking around".

Gan canny Mark..............do not push it at all.............I want YOU to be in 'remission' for ever.

Sunny days are for sitting out and admiring the scenery with a glass of water or you could try making some home made lemonade - delicious.

One Vit D tablet per day please - visit Boots for the maintenance dose package. 90 days for just over a fiver.

Hel.

[markbenjamin57 in reply to jinasc]

Thanks Hel. Yep, sunny days on their way in Somerset. How about high strength Cod Liver Oil for Vit D?

[jinasc in reply to markbenjamin57]

Does it contain 25ug in one bottle or one swig?

1 tablet does. That is the recommended maintenance dose from the medics, not moi :).

I had to get the box out to see what it said.

Which meant you delayed me getting out of this room away from the computer and into the sun with a glass of HM lemonade (no I did not make it) and a fag...............

Hel.

[markbenjamin57 in reply to jinasc]

Vit D 5ug per 10 ml (recommended dose 2 x 5ml teaspoons per day). When you do get outside, light one for me...

[PMRpro Ambassador in reply to markbenjamin57]

FIVE microgrammes? That isn't much.

[jinasc in reply to PMRpro]

Ta Mate and lovely to see you both and chat. I knew you would know about 'thingys' and help me out.

Mark can you drink the full bottle full in a day and does it have 25ug in it. If not, think dosh and health.

[markbenjamin57 in reply to jinasc]

I'm confused now...

[markbenjamin57 in reply to PMRpro]

So how much do I need?

[jinasc in reply to markbenjamin57]

25ug and hope PMRpro can translate that................which I know she can with no problem at all.

I am no good with figures, and I mean all kinds of figures before you ask, one of my many failings.

[PMRpro Ambassador in reply to jinasc]

25 ug is 1000 IU, absolute minimum, and up to 4000 IU is advised for people at risk of low levels - it is said to be the maximum safe dose but actually 10,000 IU is perfectly safe.

[markbenjamin57 in reply to PMRpro]

OMG, thanks PMRpro / Hel - but this IS getting complicated now. Maybe just swig a whole bottle mixed with the Red Stuff..? ;-D

[PMRpro Ambassador in reply to markbenjamin57]

Have you had your blood level checked? And the problem with cod liver oil is that it also has high levels of vit A and it isn't difficult to overdose on vit A.

I take it you took calceos or whatever while on pred? They give you 800 IU per day - so 200 IU/5 ug is barely on the scale...

[markbenjamin57 in reply to jinasc]

Ah, ok then. I'll work-out what that means in terms of the label / instructions on the bottle.

[jinasc in reply to markbenjamin57]

No way, I only give fags away to people who are on the street...............I bribed both my nephews not to smoke and it worked..............

[bunnymom]

This is a very encouraging report. I have been at this for 2 years and 3 months and am feeling better. I am still sick (being tired and pacing myself) but I think my brain is coming around. Hope it continues for you Mark!

[markbenjamin57 in reply to bunnymom]

Thanks bunny, I think for many of Us Lot it's still a 'slow old do' - even at Zero

[Hidden]

Ha Mark, thanks for the update and congratulations, what are you? some sort of super man? By the way, don't touch the handles on the Limo when it comes back, there could be some nasty stuff on them beginning with N, especially with a teddy called Tedski

Pete 😀😎

[markbenjamin57 in reply to Hidden]

Ta Pete Superman? Of course! But only in my fertile imagination :-D. As for the Limo - never thought of that. Tedski did mutter something about a day out in Salisbury though..

Hope you're surviving, keep us posted

[Hidden in reply to markbenjamin57]

Thanks Mark, surviving yes but reducing no. I got down to 4mg by using a modified DSNS but pains started returning. So for a short holiday in Holland I returned to 5mg/day. Felt much better, so I will give it a few more weeks at 5 and I will try another slow reduction. 😶😎

[markbenjamin57 in reply to Hidden]

Good Pete, hang-on in there and I'm sure you'll get a break when the PMR decides to give you one! And don't forget.. you're now down to a relatively low level of Pred, so that's good news all considered

[Hidden in reply to markbenjamin57]

☺️

[Grants148]

Thanks Mark,well done to have reached zero preds,l hope that the nasty PMR never comes back.