Greetings to All here - Veterans, Newbies, Men, Women, Young, Not-so-young, Confused.coms and 'Aunties' alike
As I write this, I'm very aware that, for some PMR / GCA sufferers, this horrible Auto Immune condition might never abate, let alone burn-out. And, yes, PMR / GCA is Life Changing - whether in the short (at best, 2-ish years?), mild, severe, long term or permanently. And so, I write less from a sense of celebrating / appearing to brag about my good fortune: more to share my recent experience with any or all who might be at a similar stage on their PMR /GCA Journey and clinging-on to some Hope that 'things will, or can get better'. No guarantees, but here goes:
I posted recently about a sudden (literally, within 24 hours), dramatic and very positive reversal of my PMR symptoms after struggling to reduce the Preds below 6mgpd for 6 months without continuing pain, stiffness and DF (Deathly Fatigue) - then 'upping' the dosage to 7.5 mgpd for a couple of weeks, but with adverse effects (usual PMR symptoms + nausea, dizziness, you name it!) - then taking the adventurous (well, ok, I thought 'S*D it') step of experimenting with an overnight dropping of the Pred dosage to 5 mgpd (far more than the usually recommended 10% of previous) to test-to-destruction the cause of my dilemma around the often confusing PMR symptoms / steroid reduction side-effects.
Result? An astonishing and continuing return to my usual Action Man / Business as Usual self, an absence of almost all of the symptoms and a return to 'Normal' energy-wise, both mentally and physically - despite being 2 years older than at the onset of PMR. Phe... !
Sincere thanks to all here who responded to my last post, your replies were incredibly helpful. At the same time, I wrote to my trusted local Rheumy with a synopsis of the above, and asking for his opinion as to my reducing dilemma. I've just received his reply and will paraphrase it to save time...
..."Mr Benjamin, you have now completed 2 years of steroid treatment... PMR is a self-limiting illness which dies-out in the vast majority of patients within 2-3 years... in your situation, I would now recommend a reduction of 1 mgpd each month... if this proves difficult in terms of relapse-related symptoms, then I would suggest a slower plan of 1 mgpd every 2 months, but NOT any slower... now B****r off and don't bother me again". (N.B. I made-up the last bit just to keep YOU LOT on your toes ).
So, my conclusion(s)?
1. Yes, at age 58 I was relatively young to 'catch' PMR 2 years ago.
2. As a male, I'm in also a relative minority of PMR patients (although my Rheumy suggests otherwise..). Either way, I consider myself incredibly fortunate to be (hopefully) reaching the end of a long, dark, painful, debilitating and often depressing (yes, depressing) and scary tunnel health-wise.
3. (As some research studies suggest?) PMR / GCA can be triggered by viral / bacterial infections and other genetic / environmental factors (e.g. nationality and / or pre-disposition to Stress), and / or as the ageing process.
4. The 'best case' in the possible remission of PMR, in my case at least, seems to fit a predictable pattern - if (and a big IF..) it continues. Aiming for 'Pred Club Zero' in 4 months: but, as always, we'll see.
5. With PMR / GCA, and the probable underlying AI (Auto-Immune?) vulnerabilities that can trigger it, you / we will will always have a potential 'weakness' - and so make the most of feeling well / better in the meantime, or even if feeling 'out of the woods'?
6. Try to make the most of every day, regardless of your battle with PMR / GCA. There are so many other, more serious tragedies that can beset even the most careful, healthy and well-intentioned of us. Some of the terrible and tragic events in the National and International News recently might put our PMR / GCA troubles into perspective... ?
7. For better or worse, Life can sometimes throw us a 'curved-ball' - and, sometimes Life events don't, and will never make rational sense. But, this is Life, for all of its twists and turns.
8. It's often said that Coping is the Key to survival in adversity. Hope, laughter and good friends / N&D are key to this, and YOU LOT are part of the equation too. Don't forget to support each other - at the same time as comparing notes / debating the facts / issues.
That's it PMR / GCA Amigos, hope this is useful to some of YOU LOT at least. Try to keep smiling in the meantime, and, if you think this is the last you will hear from me you are seriously mistaken. Be warned...
Back soon, happy days
MB