The Lighter Side: On the Up, after being so Down ... - PMRGCAuk

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The Lighter Side: On the Up, after being so Down - The 'Toggle' Factor..? ;-)

markbenjamin57 profile image
20 Replies

New Year's Greetings to Fellow Poly-my-Lingerers, Friends and Pred Playmates in this great and supportive Community.. :-)

[Disclaimer 1: the following is NOT intended as any kind of Medical or Professional advice, it's only my recent experience and narrative].

[Disclaimer 2: On the Brighter Side (?), in reading one of my typically long-winded Narratives, you might nod-off whilst doing so. In which case, I take full credit for helping you get a good night's sleep :-D ].

Ok ok ok. So, some of my 5 and-a-half (clearly deranged) Official Followers amongst You Lot know about my PMR story and have ill-advisedly followed my precarious progress on the Journey towards the elusive Pred Club Zero and hopes for an eventual remission from PMR. More worrying still, a few of you have even bought my recently published book - 'Write Me Funny, Ramblings on The Lighter Side of PMR and GCA' - probably in a futile effort to distract you from the realities of PMR, and Life in General. Don't some of You Lot ever Learn?! ;-)

At the same time, I appreciate that there's a continuous input of Newbies here who might NOT have tuned-in to my often silly ramblings on my PMR Journey, or who are reading this (or my other Posts) for the first time.

Either way, and for all here, my recent experience of 'Toggling' the Preds might be of interest. It's nothing new, but maybe just to add something from personal experience and to support the expert wisdom from the Venerable and respected Aunties here. It reminds me of the ancient (Chinese?) saying, 'Experience is a Great Teacher'...

First, my background / context:

Age 60 now. Gender: Male (no jokes from the Aunties please). Previously fit, strong, relatively healthy and athletic 'Action Man' type. Dx PMR early 2015 after onset and crippling symptoms concurrent with a stressful time occupationally and a bout of Bacterial Pneumonia (the type you 'catch'). A long story but it's all in the book....

Back to the Plot..

Pneumonia quickly sorted, but started on 30mgpd Preds for PMR with the usual 'miracle' relief from symptoms - and then the often precarious Roller-Coaster Journey of tapering- down despite the highly recommended DSNS-style approach, with many periods of DF (Deathly Fatigue) along the way. The term 'Heterogeneity (i.e. variability) in Disease Course' comes to mind. Could that explain a lot of the supposed mysteries around PMR symptoms Cause and Effect that are often discussed here..?

More recently:

'Down' to a Low 2mgpd Preds in November 2017 and feeling relatively good up to December. BUT.. the relatively cold and damp UK weather (and the rigours of Christmas?!) resulted in returning and increased PMR stiffness, pain and general feeling of PMR-related Malaise. Hummmphhhh, a Dilemma :-(. So: to tough-it-out, or Toggle-up' (increase) the Preds a little to see what happens? By 'Dilemma', I mean the disappointing feeling of needing to go 'backwards' with the Pred dosage when all seemed to be going so well, and seemingly so close to Club Zero. So, I decide to 'bite the bullet' - or to be more precise, reluctantly gulp-down the increased Pred dosage for a couple of days. By 'increased', I mean from 2 mgpd to 5 mgpd. Glug, glug....

Result?

Almost instant respite (!) from the PMR symptoms that were incrementally returning like the proverbial 'dripping tap into an overflowing bucket' (q. PMRpro - thanks). Better, more relaxed sleep, feeling less Quasi Modo-like and cranky in the mornings, more mental and physical energy all round. Nice... :-)

My Conclusions (from experience)?

1. With PMR, 'Toggling' the Preds up / down a little, within reason, can work for some of us. As the Aunties and others here often say, 'Symptoms Rule' - and despite the sometimes ill-informed 'off the shelf' advice around steroid tapering from Medics, or even some Rheumies to relentlessly 'get-off them' asap (!).

2. Context is All: there are SO many underlying variables that can conspire to influence PMR course and symptom presentation / management, including:

Age, gender, racial and / or genetic pre-disposition, weather conditions, contextual emotional / Stress factors (and our individual ability to cope them depending on our Personality Type), co-morbidities, Lifestyle and dietary choices, following possibly unreliable or medically validated advice from (some) medics. I could go on and on....

That said: my account here is of 'Straight' PMR and symptoms / Pred dosage management in my personal health context. With GCA symptoms (actual or suspected), the Rules are very different - as are the consequences of experimentation with Pred dosages either way, up or down. So, if this is You, don't take chances and get expert advice quickly - just in case.

Hope this helps, and thanks for reading this Post. More Silly Stuff soon, if you're not careful ;-) :-D

'Uncle' MB :-)

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markbenjamin57 profile image
markbenjamin57
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20 Replies
JanetGarrettN profile image
JanetGarrettN

Good evening Mark from across the pond. Yes I am a newbie here though be coming quickly unfortunately well acquainted with this PMR mess. Diagnosed October 2017 after many many months of symptoms and Agony my doctor just continue to a tribute to a Fibromyalgia flare only because I've had that for 20 years. So then I went looking for my own answers. I very much enjoy your humor. I have a big meeting coming up with my new rheumatologist only the second meeting since October on February 9th so I'm expecting a lot of information to flow hopefully both ways. Thanks for the chuckle this evening. Be well.

Janet

USA Virginia

markbenjamin57 profile image
markbenjamin57 in reply to JanetGarrettN

Greetings Janet, thanks for your kind reply.

Yes, I can relate to you 'Newbies' - having once been one myself and faced with the mysteries of this pesky illness! It's nice to know that a bit of humour helps in the process too. Good luck with your Rheumy - and keep us all posted ;-)

Best wishes

MB :-)

JulianJ profile image
JulianJ

I wish I head read this last night, I just couldn't seem to get to sleep ;)

I'm heading towards 7mg on the DSNS taper, I'm planning on staying there for a bit, I just need a rest.

Keep up the good work, it's good to see comments like yours, just as it's good to see all the good advice from the wonderful Aunties on here.

PMR is bad enough, we need to have a laugh.

Well off to work for me, will try and stay awake, at least for the drive in :)

markbenjamin57 profile image
markbenjamin57 in reply to JulianJ

Thanks Julian, much appreciated :-)

Maybe you need a 'driverless' / autonomous car just in case?! :-D

MB :-)

JulianJ profile image
JulianJ in reply to markbenjamin57

Well my Jeep is automatic, does that count?

markbenjamin57 profile image
markbenjamin57 in reply to JulianJ

:-D Julian, it's part way there as long as you can keep your eyes open for some of the stressed-out and impatient / careless drivers on our roads nowadays!

JulianJ profile image
JulianJ in reply to markbenjamin57

I leave the house at 6:30 and leave work about 15:00, not to busy so I can have a little nap as I drive along!

markbenjamin57 profile image
markbenjamin57 in reply to JulianJ

OMG, what are you like! :-/ As a (former) Police-associated Speed and Road Safety Awareness trainer, I should tell you that's VERY BAD and NAUGHTY :-(

On the other hand, I know you're joking - so that's ok ;-) :-D

JulianJ profile image
JulianJ in reply to markbenjamin57

I had to drive to Aberystwyth a few months back.

I've done the return journey before no problems, but now, I have to have a nap before the return trip.

It's only just over 100 miles, but about 2.5 hours. Even a good break between journeys isn't good enough. Last time I made sure I had another driver with me so we did half and half, much safer.

This PMR hits you in places you just don't think about.

markbenjamin57 profile image
markbenjamin57 in reply to JulianJ

So true, Julian.

AND.. with our increasingly busy roads in the UK, watching-out for speed cameras, etc. I know what you mean - 100 miles / 2-3 hours driving on country roads + poor weather conditions + time of year + PMR mental fatigue can all add-up to a massively greater risk of things going 'wrong'. I learned a lot about 'traffic accident' cause stats whilst in my previous role. I.e, 95% of reported RTCs (Road Traffic Collisions) are caused by Human Error - Misjudgement / fatigue / distraction etc. A sobering thought...?

Many years ago, and pre-PMR, I would think nothing of doing a 250 mile fast drive in a 'good' car without a rest break. Nowadays, 150 is enough!

JulianJ profile image
JulianJ in reply to markbenjamin57

When I found out I couldn't do the round trip with no problems was a bit scary! Driving down a nice A road. Suddenly I noticed the car in front was slowing and I had to break hard, not dangerous, but a couple of seconds later and it would have been. Had my son with me, who hasn't passed his test. Made him talk to me whilst I looked for a place to stop and have a sleep. Not something I want to repeat.

On Sunday I was heading West on the M4. Three lanes very slow moving, SatNav showed nothing, then went orange before going red. Slowly head towards Jnt 35, car on its roof up the embankment on the other side, keep going and a motorway patrol car pointing off the road on the hard shoulder. he'd lost it trying to get to the other accident. Road conditions, very poor had been raining all night and was still raining. My journey out was at a little over 50mph, plenty fast enough, but so many cars passing me like I'm going backwards.

Last year I went to Peterborough and back, for work, in a day, stopped after about 2 hrs each way, not a problem. Now I would ask for an overnight stay.

So easy for changes to happen and we don't know about them. Now if it's a total drive of over 2 hours, I take another driver to share the load.

markbenjamin57 profile image
markbenjamin57 in reply to JulianJ

I can imagine! Driver distraction / not being 100% alert (for whatever reason) and 'inappropriate speed for the conditions' are the most common causes of near misses and RTCs. We used to advise drivers to drop the car window(s) a couple of inches to increase a sense of 'connection' with the world outside - especially in modern, quiet vehicles - in poor conditions or if tired. I haven't driven on the M4 South Wales for a while but I do remember it being a very busy stretch of motorway due to the volume of traffic AND lots of junctions / variation in average speeds.

I think you're right to share the drive if you're worried about nodding-off at the wheel - PMR really does drain your mental energy as well as physically - and of course driving takes a lot of that!

Irldino profile image
Irldino

Hi Mark

Very similar experience. Was on 1.25 at beginning of Dec. Issues were one sided. Right shoulder and right knee so wasn't sure if it was PMR itself

. Very tired all through Nov and feeling way below par but had a lot of stress at work so that didn't help. Upped to 5 for few days over Christmas. Felt normal again. Knee cleared up and shoulder too. Still have a weakness in shoulder that physio is helping with. Now back at 2 and feeling ok. It's a very slow journey from 2.5 down. Spent 6 months dropping 1.25 that's how careful and slow I was and my PMR has been very straightforward. Obviously it's still simmering.

markbenjamin57 profile image
markbenjamin57 in reply to Irldino

Hi Irldino, thanks, it's always good to compare notes! :-)

Jackoh profile image
Jackoh

Thanks for sharing Mark- you're able to verbalise your experiences quite succinctly which many can relate to - especially the experience of having to increase without the feeling that somewhere along the line we've "failed" No it's because we need it at that particular time. I'm still in the highs as far as dose is concerned but I'm sure this is the case wherever on the scale you're on. So thanks for sharing positively.

markbenjamin57 profile image
markbenjamin57 in reply to Jackoh

All part of the service Jackie ;-). I agree, from some sides (e.g. some GPs and even Rheumies) there is pressure to get to Pred Club Zero asap. That's why this forum is so useful to get people's real experiences in the process!

Sandradsn profile image
Sandradsn

Hi Mark,

Sorry to hear you have had to toggle up to 5mg just as I have.Although I felt okish on 2mg I was starting to get aches and 'battle fatigue' as I call it.

The drop to 1mg pushed me over the edge!

It just proves we still have PMR

Don't forget there's nothing wrong with an afternoon nap..especially in the morning!!I love this.(a funny line out of Marks Write me funny book)

markbenjamin57 profile image
markbenjamin57 in reply to Sandradsn

Hi Sandra

Thanks, but my decision was based on all I've learned from You Lot (esp the Venerable Aunties), and so without much feeling of 'failing', more of doing the right thing in context. I agree with you, a bit of Toggling (titration?) is a sure way to find out where we are with PMR.

As for the afternoon nap in the morning.... :-D

Glad you got a positive result with your GP :-)

Nitrobunny profile image
Nitrobunny

Yep, yep, definitely learned that lesson over the years. It’s far better to “toggle” up as you so eloquently put it, by two or even five mg and follow the symptoms that to try and stubbornly ride it out only to realize I’m in pain, I’m tired and there’s an easy fix to this. Fortunately I can usually get right back down to where I was rather quickly. I never cease to be amazed at how such a seemingly small dose change can make a world of difference. The love/hate affair with the little while pill continues....😊

markbenjamin57 profile image
markbenjamin57 in reply to Nitrobunny

Many thanks, Nitrobunny! :-)

I agree, just a relatively small (% wise) adjustment either-way with the Preds can make a big difference to PMR symptoms management - and the relief that goes with it.

I like your analogy of a continuing Love / Hate affair with the 'magic' little white Preds. So true! ;-)

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