RECURRING PMR SYMPTOMS OR ANOTHER CONDITION?

[Admiral06]

I began weekly depo-medrol injections for PMR on August 25, 2016, and have been tapering since November 15. Two weeks ago my daily dose dropped to an estimated 2.0 mg and I experienced 4 consecutive days with stiffness in my hands and mild-moderate shoulder pain. When I went back up to 2.5 mg, the symptoms became less frequent, and at 3.0 mg they improved once again. Over the past 6 weeks, I had experienced occasional pain or stiffness (mostly in the morning) that lasted a short time and then passed. I wrote this off to old age pains that were returning, or a consequence of physical activity performed on the previous day. I am now guessing all of these events were PMR symptoms recurring as steroid levels fell, and they became more acute at 2.0 mg. Moreover, I am afraid that if I ignore them they will get continually worse and eventually become a flare. Is it possible I am experiencing pain and stiffness from another condition related to steroid withdrawal? If it is PMR, how long should I stay at the present dose before testing lower levels once again?

[PMRpro Ambassador]

When reducing the dose you are NOT reducing relentlessly to zero. You are reducing looking for the lowest dose that manages the symptoms as well as the initial starting dose did. At a guess for you this is 3mg - and it makes sense to stick there for a couple of months at least before trying a small step down. If that still results in increased symptoms you stay at the 3mg level for another couple of months. Rinse and repeat.

At this stage you are also looking for adequate adrenal gland function. This isn't a race and you are at a very low dose - patience is the key now.

[Admiral06 in reply to PMRpro]

Thanks for the advice

[markbenjamin57]

Hi Admiral06, nice to see you here again.

Maybe you've sort-of answered you own question here?!

By my logic (and from painful experience!), the 'Diabolical Triangle' of the often unpredictable nature of the course of PMR symptoms (due the underlying auto-immune illness), the often equally unpredictable results of even the 'best' steroid tapering methods, and the relative degree of physical / mental pacing in the meantime are all inter-linked / dependent.

Yes, you can reduce the meds according to a sensible 'plan' and get some subjective sense of relief from the symptoms. But if you then 'up' activity / stress levels dis-proportionately in relation to your (still lower) physiological tolerance, there will inevitably be some kick-back symptoms-wise.

Equally (and if I'm right), if the PMR symptoms are in fact waxing and waning in intensity (of their own accord), this can throw the best of the usual 'Inputs / Results' metrics out of the window!

And, for good measure, yes, PMR is set of symptoms of a chronic AI illness which does take its toll physically and mentally - and at a time in life when none (or few) of us are as fit and resilient as we once were. No wonder confusion and desperation reign sometimes (often?) ...

My conclusion?

Try to adopt a philosophy - and coping strategy - that embraces a bit of everything. Yes, keep an eye on the metrics of meds dosages etc. and regularly monitor progress. Also, look at the Bigger Picture / context in terms of Cause and Effect - and the possible interlinking patterns.

But... ultimately, try not to over-analyse and find 'fixes' for what is a very complex set of AI Causes and Effects over some of which we have little or no control - and may never be fully understood by medical science. From my experience, over-analysis can in itself be a cause of psychological / emotional Stress - and Stress seems to be a well-known factor in increasing or contributing to PMR / AI symptoms vulnerability.

This reminds me of Robert Pirsig's 'Zen' philosophy (as in his 1974 best-seller book, Zen and the Art of Motorcycle Maintenance - and Enquiry into Values), where he compares the pros and cons of either analysing (to gain a sense control of?), or simply accepting a Life situation or event. His basic message (I think) was about trying to enjoy the 'Quality' and experience of Life, and not constantly striving to chase the improbable illusion that we can become Masters of it.

Food for thought for some of us maybe, especially when struggling to make sense of PMR and / or all that it brings?!

MB

[Admiral06 in reply to markbenjamin57]

Greetings markbenjamin57, and thank you for a comprehensive answer which brought me smiles of acknowledgment.

As you may recall, my educational background is in engineering, so over-analyzing is a way of life for me. Additionally, depo-medrol is a non-traditional treatment for PMR and consequently there is very little information on dosing, and nothing on tapering. Its pulse dynamic, however, combined with a plasma half-life of 69.3 hours, (compared to 2-4 hours for oral pred), reduced cumulative total steroid use and provided me with very powerful anti inflammatory activity that I believe enabled a very rapid initial recovery.

In summary, pain and stiffness were completely controlled on my initial maintenance dose, my CRP dropped from 48 to 7.1 in one week, adrenal recovery began 10 weeks after tapering began, and I was able to reduce my dose from an estimated daily average of 11.4 mg to 3.0 mg in less than 7 months. To accomplish this, however, I had to plan a tapering strategy based on weekly depo-medrol pulses smoothed with daily spikes of oral methylprednisalone. I then made continual adjustments to perfect my chart, based on any negative physical response I associated with each decrement.

This definitely fits your profile of generating stress by over analyzing and trying to fix a complex set of causes and effects that may be impossible to understand. The shoulder and hand pain also brought the sudden realization that the PMR was not gone (as I had hoped), but might be around for a very long time.

Interestingly, my symptoms arrived just after I planted a large garden (in my weakened condition) and turned a very scary 70 years old. Although I usually have a very positive outlook, these have been difficult and depressing times for me.

[markbenjamin57]

That's interesting Admiral06

You're obviously taking quite a scientific approach to your tapering / symptoms monitoring. Nothing wrong with that at all, and maybe some of us should be a little more analytical to make some sense of what's going on - and why..!

Like you, I have an engineering / analytically-minded side. It can come in very useful when taking a rational approach to problem solving. That said, at one time I was becoming more and more analytical about my own tapering / symptoms / causes equation and endlessly number-crunching to make sense of things - combined with doggedly sticking to a detailed tapering 'plan' (my equivalent to DSNS) and dosage reduction target.

The result? I recently looked back at my meticulously drawn up 6 month dosage reduction plan / progress chart and realised that it hadn't made any significant difference. Hummphhh! LIke many here, I've struggled symptoms-wise with reductions below 7 mgpd and have now 'upped' back to 7.5. I then also realised that I've been doing quite a lot more physically, and so it makes some sense in the overall equation. Reflection can be a wonderful thing..

There are also many paradoxes with this illness. Sometimes, any or all of the pain, stiffness and 'deathly' fatigue can take you over for no obvious reason. But for the past couple of days (and a few times before) I've been miraculously symptoms-free for several days at a time despite (last week) NOT taking the Preds overnight - and feeling so good that the temptation is to chuck them away. The difference between 'worst and best' symptoms really is like Night and Day. But before I get told off by the experts here, I don't intend to, or advocate doing that - I'll just drop the dose a little and keep my fingers crossed!).

As for 'over' analysing (and the potential downfalls!), you might be interested to read my post from about a year ago - 'PMR / GCA - Personality Types, The Journey of Change, and Coping Strategies' - which broadly (I stress broadly..) describes different 'Types' and how they / we might experience / adapt our coping strategies with a chronic illness - or other Life changing experiences for that matter. It's based on my work with people in Change over many years, and seemed to resonate with a few people here.

I think your last para. sums things up, and I can relate. The clock ticking, crossing an age threshold ('big' birthday), and trying to get on with Business as Usual - all whilst battling with a complex and serious (if invisible to others) illness. Yes, it's challenging and, in my books, quite natural to feel quite down as a result of staring Reality in the eye. It's good that we can talk about these very personal and sensitive things here...

On the positive side, things can get better (as well as worse..) with PMR, and it's good to read posts from those who are on the mend and / or can see light at the end of the PMR tunnel. One of the lessons I've learned with PMR is Patience (not usually my greatest strength!), and to roll-with-it during the tough bits / accept that I don't ultimately have control over some elements of the PMR / steroid tapering process, both physically and psychologically.

And, not forgetting the power of Laughter in helping to relieve the equally debilitating symptoms of Stress and Depression. That must be good for the Mind, as well as the body...

Keep smiling, and remember the Art of Zen...

MB

[Admiral06 in reply to markbenjamin57]

Well said Markbenjamin57, One of my biggest problems is trying to explain every change or symptom that comes along and always assuming it is PMR related. I think staying busy gets my mind off they way I feel and helps in the long run.

[markbenjamin57 in reply to Admiral06]

Yep Admiral06

I think the challenge for some of us 'over-thinkers / analysts' is to let-go a little and get immersed in something enjoyable / relaxing / creative (?) that distracts us from our sometimes self-limiting thoughts.

Keep practising - you'll get there!

MB