I’ve had PMR for nearly 7 years. In that period, I’ve tapered prednisone many times, occasionally reaching dosage of 2 mg. Each time, circumstances and situations have caused the dreaded “flares”, necessitating increase of my pred dose. Currently I am at 6.5 mg.
As I undertake the current taper, I realize I don’t know what is going on. I started this taper at 10 mg. Pred, where I had been for several months. I started the slow half mg. Taper, giving myself weeks at each level, before dropping the next half mg.
Now, the confusing part....The only symptoms of pred withdrawal have been some brief periods of fatigue, a little more tiredness, and some sluggishness around daily activities. Otherwise, no returning pains, which I have previously experienced as I tapered to new doses.
I am wondering what is different this time....not that I’m questioning my good fortune, ...but it seems like this is being easier than ever before...!
So, Forum wise ones,...can I actually be tapering out of Active PMR?! I guess only time will answer the question,...but I am beginning to feel optimistic about finally reaching a point of remission of the active stage of PMR.
I think it’s important to say that as I ease through my PMR stages, I find more and more evidence of aging that has continued to develop alongside PMR issues. Recent MRI showed significant level of arthritis in spine, which is much worse than in 2013. Well, Duh,...as the anti inflammatory effects of prednisone reduce, I expect to discover “normal” aches and pains which had been masked by the drug.
So, I keep my fingers crossed that I am finally seeing the end of this wretched disorder...time will tell...
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Purplecrow
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I am quite sure that the disease activity swings up and down right from fairly early on in PMR - for some it remains relatively high for some months and then starts to fade a bit while for others it may fade more quickly. While it is on a downward phase you may be able to reduce the dose but then it may ramp up a bit and if you have gone too low for the new level you have to retreat for a bit. On the whole though the maximum level of activity falls over time. And eventually it sort of collapses - and then you are able to get to really low doses or even off pred.
You could well be getting close to the end of Active PMR , or your PMR level has reduced from severe , to moderate and now mild overtime and this slow taper is just what it needs to be managed successfully until it is entirely done. Fingers crossed!
Your withdrawals use effects are also telling too , and it's good that you have already learnt to see the difference between what you are feeling now and an actual Flare in PMR symptoms.
Your at the Edge of a new Phase at 6.5 mg . Things can get confusing because the symptoms and the Pain that you feel can be because you are reaching a point when the Adrenals have not begun to function normally and taken over the role that the Steroids have been playing.
It's a time when it's good to note differences as you have begun to do , and Fatigue definitely plays a much bigger role. This phase involves the need to care for your body and pace yourself even more than before in the hope that as you drop to doses below 3 mg you can reduce the impact that Adrenal Deficiency has on your recovery.
Steroids also don't mask the Pain that may not be part of PMR but other Pain or Body issues that may have increased during your time with PMR with its effects on your movement and your muscles and nerves.
It's a good time to use gentle exercise and stretching each day , as you will see , not necessarily the impact of aging on your abilities , Pain and stiffness but which muscles and ligaments feel tight or weak . A little exercise within your comfort zone each day helps the Pain but also helps control the Fatigue in this phase.
A light nutrient rich diet , fluids and plenty of balance in your rest and activities , both Mental and Physical , will also improve your chance of success. Using standard painkillers like Paracetamol, and adjusting your activity if you feel an increase in Pain becomes a big part of finding the right balance and gauging if you are dealing with a Flare , A PMR warning or another form of Pain that doesn't require you to reach for the Pred bottle.
It can be a tiring time and staying positive and being Patient during this phase is the key. Finding those silver linings and celebrating the tiniest of achievements is as important now as it was when you were first diagnosed. But it is also a time filled with even more possibilities and a big dollop of Hope.
Love yourself , look after yourself and lots of luck , Bee xx
Interesting to hear how you are getting on and wish you all the best. I got to 2.5 after 6 years but after 2 weeks the leg stiffness got so bad I could hardly walk. I upped back to 3mg and 2 days later I’m walking fine.... I’ll try again soon
I've been on prednisone for almost 6 years and have managed to get to 10 mg more than once (started at 40 mg). The only symptom I experienced from about 13 mg downward was fatigue, often debilitating, which I put down to my adrenals (I believe I'm one of the few that only absorb 50 or 60% of prednisone). Unfortunately, I have had flares each time and only once got to 9.5.
I wish you all the luck in the world and hope you succeed in dealing with the fatigue and no flares!
That's a nice explanation and one I'll hold on to. I'm almost at year 4 so expecting this next year to show more improvement pain wise. I can't believe I just said that so matter of factly! Acceptance I guess. Best wishes to you ❤️
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