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 ].
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
'Uncle' MB