Question for markBenjamin

[JoanJo]

Hello MB - I went through the Popular posts searching for your description of dropping to 5mg pred, after first upping the dose, with worsened symptoms resulting. Then dropping to 5 and feeling pretty fantastic (If I am recalling correctly). A similar thing happened to me this weekend. how may I find that posting of yours?I'd like to re-read what you experienced (a couple months ago, was it?)

[markbenjamin57]

Hello JoanJo

That sounds promising. The post / thread you're looking for is titled:

'The Lighter Side of PMR - Feeling strangely GOOD.. urgent advice please?! ;-)' from 3 months ago. You'll find some interesting replies from the Aunties there too.

Good luck and keep us posted?

MB

[JoanJo in reply to markbenjamin57]

Thanks MarkB for info. It was so great to initially read of your successes Thanks SJane for encouragement. Good luck with the emotional fallout of family moving away. Not easy I'm sure. Will look up and Mb thread and read with great anticipation and hope that this applies to what is happening to me. I had previously been alternating between 7 per day, plus 1/2mg, or 1/4 mg or even 3/4 mg if I was in really rough shape by 10 pm (my shift at work ends at 10 pm) so gauge the need depending how I feel during work hours.

The jump to 7 and 3/4 didn't do its work the last time round, (feeling especially sore/stiff in shoulders and legs that whole day and next a.m.) So the following day, I said to myself "I'll start with my early a.m. dose at a lowered amount of 5mg (usually I'd start the day with a "base" of 6 ) and gradually keep adding as the day progresses to no more than 7 to 7-3/4, as my body demands more.

Well, lo and behold, after my 5mg at 7 am, my body was not complaining at all (s in not begging for more pred) throughout the bulk of the morning and rest of the day. I was sure it'd be screaming for more!. I couldn't believe how I was getting up and down from sitting with ease, doing multiple stairs (knees bending properly), reaching for high items in the cupboards, bending low and weeding the garden for over an hour, walking the neighbor dog --feeling no pain or stiffness --only the slight ache here and there (just to remind me I still have PMR). I did add 1mg at midnight (total 6 mg for the whole day) due to feeling leg pain start up at that time (from added stress of admitting a family member to the hospital, I think. )

But am trying this 7 am 5mg "base" dose route again today and seeing if I need to add another mg . So far, so good!

"The sun coming out from behind the clouds" is a good metaphor for suddenly feeling amazing when one shouldn't be feeling amazing, SJane! I pray that you and Bonnie Q can stay strong for the day when the sun is out around the clock!! MarkB being our inspiration helps us to keep on keeping on. (Love the humorous postings too!)

JoanJo

[SheffieldJane]

I am glad you posted this joanjo, it prompted me to read all the posts following mark's " feeling strangely good" post of 3 months ago and all the responses. It felt encouraging for me at the moment stuck between 7 and 6 mgs feeling utterly exhausted , quite generally ill in the mornings, constant headaches and knife like low back pain. Yet in many ways stronger than I have been for years with good stamina. I usually manage around 7000 steps a day according to my Fitbit. On a bad day, usually low morale type day, I only do about 3,500 steps. It is really hard to read my symptoms. I am pausing reduction because of the emotional stress of my daughter, husband a grandchildren going to Australia for a year on Saturday!

I think my problems might well be stemming from low Adrenaline. I occasionally get the sun coming out from behind the clouds sensation,enough to make me believe that recovery will be amazing.

I expect the advice is sit tight, do nothing, let the storm pass. Fight or flight feelings with broken wings.

[BonnyQuine in reply to SheffieldJane]

I haven't got my Pred down as low as you yet, but identify with 'exhausted', 'generally ill in the mornings', 'really hard to read my symptoms'. Also identify with beloved offspring needing to live their own lives and flying off into the blue. Takes some getting used to. But take heart - a year isn't long.

Not sure I can remember what I used to feel like before, but definitely not knackered like this. No stamina left, in my case. Envy your walking capability. It's the unpredictability that gets to me most. And the hair loss really knocks my confidence. But guess your last sentence is spot on.

Lets hope for enough patience and stoicism, and for the sun to come out from behind the clouds increasingly often.

[SheffieldJane in reply to BonnyQuine]

It really sucks! ☹️

[BonnyQuine in reply to SheffieldJane]

Yeah - especially when not sleeping in the middle of the night.

[Sandy1947 in reply to SheffieldJane]

Thanks for saying it like it is, girlfriend!

[Sandy1947 in reply to SheffieldJane]

Thanks for saying it like it is, girlfriend!🎈😀

[JoanJo in reply to SheffieldJane]

Hi SJane-

Un-techy JoanJo here wondering (still!) how to locate that thread we're discussing put out by MarkB "feeling strangely good ". I tried under "posts " view by "newest", by "popular" and no matter how much I scroll , I cannot locate it. Any tips? He says it was 3 months old. As you said you had recently read it. I just haven't been able to figure out how to access it!! Any help is appreciated! JJ

[SheffieldJane in reply to JoanJo]

Tap on uncle Mark's name then all his posts will appear in a list, then scroll down about 12 posts and look for the words " feeling strangely good" in the title and bob or Mark's your uncle.

Not that I'm stalking him or anything.🙄

Or click the cursor if it's not an IPAD.

[markbenjamin57 in reply to SheffieldJane]

Blimey Jane!

Never been stalked before, but there's a first time for anything!

Many thanks

'Uncle' MB

[markbenjamin57 in reply to SheffieldJane]

Yep, the Post was about 3 months ago and entitled: 'Feeling Strangely Good.. etc..' as Jane says.

[markbenjamin57]

Dear JoanJo / all following this thread

First, sincere thanks for your post - and comparing notes. It's what this forum is all about!

I'm sorry if this reply is rather long, but I hope it helps. I've repeated it as a New Post to all here if you think it's relevant. You tell me..?!

Well, first: I think the moral of the story / verdict for many of Us Lot is that, yes, PMR (if not GCA) CAN burn out (or at least threaten to..) as we get to lower doses of the Preds and / or The Adrenal 'Guyz' (gender neutral) start to get their act together again after a long lay-off. The difference is Night and Day symptoms-wise.. Yay..!

That said, and as I'm still learning after 2-ish years of PMR - and despite a recent, miraculous 'break' in symptoms (!), we're still not out of the woods even when feeling better / more like our normal selves. After my account of 'Upping the Preds to 7.5mgpd and feeling worse / then thinking S*d it, I'll try dropping to 5mgpd out of sheer defiance / then getting a sudden, paradoxical (?) break from all symptoms etc' episode, it's back to business as usual with some of the familiar pain, stiffness and occasional DF (Deathly Fatigue) whilst holding steady - now at 4mgpd and with gritted teeth. Hey Ho, this is PMR after all! ;-/

That said:

Both my Rheumy and my GP, independently of one another, seem hell-bent on me reducing the Preds by 1mgpd every 4 weeks to Club Zero: which, of course, defies of all of the best wisdom here (i.e. 'maximum recommended reduction of 10% of the previous periodic daily dose at any time, etc). A familiar story for others here..?! As the (now) famous DJT***P would say: 'What the H*ll's going on here?!'

And, interestingly (the plot thickens?):

My (ok, respected but obviously very busy) Rheumy expressed surprise that I wasn't off-of the preds when he signed me-off about 6 months ago - barely 2 years from first dx. He went on to say, in writing, that (q.) 'for the vast majority of patients, PMR goes into remission in 2-3 years' and that I shouldn't stay at 5mgpd any longer, whatever. Mmm.... really... and why, exactly?

My (new) GP was recently also quite emphatic that (sic.): 'She gets ALL of her patients off-of the Preds within 2 years'. Wow! Again, Mmmm.. I chose not to get into an argument with her about my very different understanding of these things. I'll keep my powder dry for now..

Neither my Rheumy nor my GP seemed interested in discussing or explaining the possible causes of the notorious DF (Deathly Fatigue - mentally and physically) that often goes with both PMR and / or steroid tapering - and the reasons for it - nor the concept of DSNS (or its equivalents) especially when tapering at those critically important doses (i.e. < approx. 7.5mgpd) of the Preds where 'slower = safer / better'. Mmm.. x 3 now..

Reading between the lines (?):

I can't help wondering if (at least) some medics are maybe NOT so ignorant / un-informed about PMR and steroid tapering etc. as is often suggested here. But some are maybe more aware of the consequences of 'spilling the beans' (i.e. detailed and full disclosure) about what they really know about the process from their medical training, and choose not to confuse or scare their patients un-necessarily - and / or, maybe to cover their backs in terms of normal medical protocols. The thorny topic of whether to To / Not to advocate controversial bisphosphonates (Alendronic Acid) for possible osteoporosis comes to mind as an example...

Surely, any qualified Medic will know Chapter and Verse about the often silent, co-lateral damage caused by the ubiquitous Preds whilst prescribing them to manage the worst of PMR symptoms for their patients, in most contexts? (I appreciate that GCA is a different matter clinically, for obvious reasons). So, maybe their strategy is: 'encourage the typical PMR patient to get off-of the Preds asap at the same time as recommending precautionary / compensatory drugs (e.g AA) and kick-the-can-down-the-road in terms of any consequences later'? You tell me...

From what I've learned as an amateur on this Journey, PMR management via corticosteroids (or their equivalents) is a very complex multi-dimensional Physiological and Psychological trade-off, as many of us already know from bitter, personal experience. A case of Snakes and Ladders, or what?! :-?

But, maybe, with PMR at least, there is an equal paradox for some Health Professionals too: i.e. 'managing contingencies' around how much (or little?) to reveal to their patients about the potentially nasty physical and psychological side-effects of the cheap-to-adminster, generally effective and easily available Preds - at the same time as allocating their time and clinical expertise to more 'serious' (e.g. Life threatening) health conditions - and with limited resources all round (in the UK, at least)?

My conclusion, for better or worse?:

I'm certainly not excusing or advocating bad manners, ignorance and poor Patient Care by ANY health professional. But I do wonder if many Medics nowadays are so stretched in terms of their time and 'Performance Managed' resources that many struggle to prioritise which of their patients get the most urgent, focused attention and referrals to specialists - and which, too, places them in a difficult position all around.

As PMR sufferers, I'm certain that we're not at the bottom of the pile on the daily Priority List of many medics. At the same time, we're probably not at the top, either. Food for thought - and all the more reason to keep close to this forum as a reality-check and source of trusted advice and research?

As always, I bow to the greater wisdom and experience of the various experts and Aunties here. I'm sure this one will run and run...!

In the meantime: try to stay positive, keep smiling, and remember that 'This, too, will Pass' - even if we don't quite understand why, when, or how.

That's it. Brain over-heated after such long and intellectual ramblings. Wine open (dry red - as usual). Dinner in Wardrobe - again! That 'Witty' (allegedly) book making progress for publication pre-Christmas, if I have the energy.

Ohh, another day with PolyMyGodlyRoomInTheAtticUghh! ;-D

MB

[BonnyQuine in reply to markbenjamin57]

Mustn't overdo it, but in pursuit of 'staying positive', I find an occasional dram of single malt can be quite helpful at times. Sip slowly, savour and smile.

[JoanJo in reply to markbenjamin57]

Hi MarkB (a.k.a. "Uncle Mark ") - thanks for your thoughtful (and funny!) reply. Couldn't agree more re: some of these health professionals trying to move us on through as quickly as possible. Feel like I'm involved in THEIR own agendas vs what is best for me. I'm so grateful for this forum. Appreciate your re-explaining what happened to you. (Still attempting site navigation --appreciate SJane's and others helping me learn the ropes).

It's so crazy to fathom how your GP and Rheumy want you to zip right down to zero. (Hoping you can get the needed refills from them? If that's the case) My own rheumy said "you'll be off pred within a year" --she had visions of zero's dancing in her head by Christmas! The positive thinking is nice but not quite based in reality , as I've learned on this site, and from experience. I agree that it boils down to a time management/ triage/ prioritizing sort of thing for them with their patients. And then with PMR not being exactly the Disease of the Year --or the one with great noteriety deserving all their research and attention, we are in a minority group in the medical world. All the more that we do need to stick together and learn from each other, and support each other!! I don't plan on going any where any time soon!! This is my lifeline right now.

Glad you're sticking around, even with the good tapering successes as of late. 4 sounds like a dream😊😊 -- break out that red and celebrate!! You've got that right! Every pred taper is a huge success in our world.

It's funny how I get these blank stares/ cross eyes after being asked "how are you doing Joan?" (meaning "how's your poly-whatever-a-you -call-it?" ) and my happy reply as of late is "I'm in the upper 7's but amazingly, yesterday, I flirted with 5, felt wonderful, and went to bed with 6. Woke up feeling fine!" I forget who's PMR savvy and spout off way too often.

Can't wait for your book! The humor really works to lift my spirits! 😁😁😁

Many thanks to you and others. I enjoy your "Un..... " (can't recall the spelling) silly language postings (previously unfamiliar with it, but I get it --for the most part and reading yours and everyone's back-and-forth banter. Very reassuring that in the middle of the night, when I can't sleep, I can always go to this site for relevant, helpful information ----and a good laugh!😀

JoanJo

[markbenjamin57 in reply to JoanJo]

No worry Joan, all part of the service

I agree with you about (some..) GPs, and I think the others have said it all.

I like your take on how to answer people who ask how you are - I bet that confuses them! Well, I suppose 4 IS pretty good considering, but with PMR and the Preds you learn to never quite trust what's going on. Such a Snakes & Ladders process..

I've been working on the book today - it's really just a collection of my witty (allegedly) posts with a few added bits to tease You Lot, but it's surprising how much time and mental energy it takes to format it for the printer. Oh well..!

As for being called 'Uncle' Mark, I still worry that it conjures-up images of me shuffling around here in a soup-stained cardigan and slippers, sucking Werther's Originals all day, endlessly listening to the shipping forecast on the BBC without really understanding what it means, and tut-tutting under my breath about 'the state of the world nowadays' and the price of Broccoli. And, oh yes, polishing my medals. If you only knew..?!

But that's ok if it gives You Lot a therapeutic giggle or two

Thanks for the lovely feedback all, back soon (if you're not careful..)

MB

[JoanJo in reply to markbenjamin57]

Hilarious! Your book can't come out soon enough. JJ all smiles!