18 months in now. Down to 2mgs and more than ready to slow taper to 1.5. My PMR pain is fair in my fingers and minimal in wrists, shoulders and thighs.
I’ve twice now forgotten to take the steroid in recent weeks, the first time I felt like the pain was actually lower than other mornings but I dismissed that and took my meds AM. I did it again and I definitely felt less PMR stiffness upon wakening (& swallowed the pills anyway).
Can I read anything into this? I don’t intend to waiver from slow wary tapering learned from this site but it seems inconsistent with most other experiences.
I was very active before and I’ve kept it high (and went keto) with gym, loads of steps and even managing multiple 18 holes of golf per week Ok now (could not manage that at in between around 9 to 6 mgs strangely).
I know folks will question if this is PMR but the early months showed classic symptoms.
Mildish PMR seems rare but do I react to my body liking no pred at this stage? Obviously the important thing is hoping that the disease just stops the fight with my immune system but that’s another matter!
Loving the site education!
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Actually, males do seem to get through PMR easier than ladies, and it is often discussed on here that there are various forms of the disease.
Fingers crossed 🤞that you are one of the lucky ones, and have got away fairly lightly compared to others.
Wise to continue reducing slowly, and the acid test with be in the future when you’ve been off the Pred for a few months, and no return of any symptoms.
Ditto to what DL said - but don't get overconfident and do keep reducing slowly. 2mg can be plenty to keep the daily dose of inflammation under wraps and the only way to be sure that less works is to continue as you have done. 2mg pred is also enough for adrenal function for day to day so that last bit can be tricky too. However - if what has happened is that the adrenal function part has settled down at these low doses, that would also help you feel better in the morning when the biggest dollop of cortisol would be shed under normal conditions. The end may well be in sight but it may also be that you are going to be great on a very low dose - which is the usual hope. It is what happens to the majority of patients according to my rheumy here and these very low doses of pred are safe longterm too so there is no rush.
My experience with PMR sounds fairly similar to yours. It took me a year to get from the starting dose of 15mg down to 5mg but then 1½ years to get from 5mg to zero. I've been pred free for4 months now and am doing all the things that I did before without pain and stiffness (physical work, lots of walking, etc).
So don't rush this last bit. I stayed at 2mg for a long time until I was absolutely sure that I was ready to taper - mentally, physically, emotionally, etc. And then the same at 1½mg, 1mg and again at ½ mg.
I like to think that, with a very slow taper and staying at the lower dose for a long time, my body realises that it needs to compensate for the loss of the pred and slowly adjusts to make good the difference. My belief is that it can't do this if the reduction is too quick; it can't react fast enough so the PMR overcomes my natural defence mechanisms.
Thanks for the replies and I will certainly be taking my time going below 1.5mgs if I do at all until the PMY extinguishes itself.
I don't think there is any link between the pred rate of reduction and the recovery from the PMR disease so I'm not going to focus too much on the steroid now that I am down to a level where my adrenals may be chipping in.
The only link is that if your PMR is fairly low activity, you are likely to be able to reduce faster than if it were more active - but it does vary over time too.
It's good to know that I have learned to understand the illness correctly which is 100% down to this site and your knowledge - this is despite the fact that I have had no input from GP's, no referral to rheumatologists and a refusal when I asked for an adrenal function test.
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