Diagnosed in April 2019, with excruciating pain, classic very high inflammatory markers, no response to prescribed NSAID's, and a "miraculous" 8 hour response to Pred. I have been lucky and have managed a steady and flare-free reduction (using DSNS and 2am doses) with temporary stalling for a month or two at 7.5mg and 3.5 mg but never any need to raise the dose, just repeat the DSNS reduction scheme a couple of times before moving on. If I listen carefully, my body seems to tell me when I can reduce further and when I need to stand still for a few extra weeks. My GP trusts me to keep reducing but at my own speed, and not according to her textbook !!
I have now reached 1.5mg and am attempting the reduction to 1mg. This is a 33% reduction and my body seems to be objecting........... How can I tell when to "push through" the relatively mild aches and pains? How will I know when 1mg is enough and when to try to move down to 0.5mg? I really don't want to risk a flare at this stage but would (of course) love to reach zero Pred and know that my PMR is in remission.
Many thanks
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I think you are doing very well. Here is a cautionary tale. I got to zero last year (after five years on pred) by doing each step of DSNS twice, thus taking 3 months to do each half mg taper. One year to go from 2 mg to zero. Sadly, after a month at zero, I had to start taking pred again and now am taking a higher dose than I had done for years. So, what I am trying to say is, DO NOT TRY TO PUSH THROUGH, I wish I had stayed at 1 mg for longer than the three months I was tapering. I should have stayed on each of those final very small doses for a month without further tapering, even if it meant four months for each tiny step. I believe this would have helped prevent this very serious (and unprecedented for me) flare. I have always said the lower the slower, and PMRpro "It isn't slow if it works" and honestly thought no one could go any slower than I was. I was wrong. This probably won't happen to you, but do be very careful. Don't push through niggles. Be well.
Thank you Heron. I know you are right, but I find myself wondering whether 1mg can actually do anything significant - it is such a tiny dose. And I am now 73 years old, with some osteoarthritis, a Dexa scan showing osteopenia verging on osteoporosis (a family trait), type 2 diabetes etc., and I find it harder than ever to distinguish residual PMR pains from generally growing older..............
But I do thank my lucky stars that while 2½ years ago I could not even dress myself or lift the kettle, I can now garden for a few hours and walk the dog.........
I've just turned 74 and have extensive osteoarthritis and have had my own battles dealing with bone thinning. I agree, sometimes you think, oh, it's the arthritis. Or, one mg can't be doing anything, This is why I wrote my reply. I have to stop sometimes and give myself a sort of mental scan, checking for where and why there is pain. I'm a lot better than I was, got my dose back down from 10 where I had to go (to my horror and dismay, believe me) and am now at 4 occasionally prodding to see if I can get to 3.5. Given that for most of my now six years on pred I was usually at or around 2 mg you can imagine how I feel about this. I felt better in myelf once I got back down to 5, but this has been going on for several months so it hasn't been easy. I can tell the difference on the day I take 3.5 but it might be pred withdrawal so I've reverted to the DSNS method again, usually not necessary when dealing with a flare, and hope eventually my body will accept that 3.5 is enough, and then I'll take a stab at 3!
Btw I may have had a similar first two years to your two years. I got to 3 from 15 in the first year, then took another year to get to 1,5. But that really wasn't quite enough so I was mostly at 2 or 2.5 for the next few years. Last year was my real push to finally get off pred, with somewhat disastrous results!
Well maybe that’s your body telling you you have reached your lowest dose achievable - at least for the time being.
You have said you listen to your body,and reduce when you feel able, and stay at current level when you can’t……so why is now different?
You are not reducing relentlessly to zero, and you seem to have had an easy ride so far, so be grateful for that (many would love to be in your situation)….so why rush things and risk a flare when you are so low?
You may well find in a month’s time you can reduce, it may take longer, but to be honest at just about 2 years in there is no great rush.
You will get to zero, but when your illness is ready to let you, don’t spoil things by trying to “push through”.
Thank you DorsetLady. I know you are right and that the tortoise wins the race. I have had so much excellent advice over the past 2 years from this site. I am lucky to have a sensible GP and I have not needed a referral to a rheumatologist. I have not even had my blood markers checked since that first diagnosis, and both my GP and I have simply relied on "how I feel". It is just hard that the final 1mg of Pred seems to take so long to get through.
As I’ve said many times, it took me as long to get from 10mg to zero as it did to get from 80mg to 10mg…slightly different I know because GCA not PMR, but like you no flares and no hassle from GP. So, no way was I going to ruin it by trying to rush the final hurdle - and fall flat on my face!
Just do what you’ve done all along, and trust your instincts 🌸
I’m now down to 3mgm, diagnosed December, 2019. My gp has said when I get to 2mgm I’m to remain there for about a year. This avoids the likelihood of flares and gives the adrenals a chance to get working. It’s a very small dose & worth putting up with to have a better chance of being off pred for good.
But as I found it still doesn't necessarily mean you are then ready to taper off completely, although it is certainly lovely to have a doctor who appreciates the problems of tapering off pred and the vagaries of PMR!
Hi, Just to endorse what has already been said! It took me approx four years to get from 5mg to zero, so I guess it would be sensible to reduce expectations - PMR doesn't listen to expectations; it does what it wants!
You really have done well, and you have done much the same as me insofar as I listened to my body, and was left by my GP to follow my instincts. I learned that even a half mg could make a big difference.
Take it easy, and you will get there. Took me six years in all to reach zero.
I have to confess - if it were me (I wish!) then I'd stick ...
I know of several people for whom 1mg was loads to keep things under wraps - but zero wasn't and after times varying between 2 and 6 months the inflammation had built up enough to cause symptoms again. Prof Dasgupta told us last summer that he often keeps people on 2-3mg indefinitely as it reduces the risk of relapses.
I assume you are using the DSNS approach? Have you tried starting with 1 day new dose, 10+ days old dose? It doesn't matter how long those first steps take each time but pushing through at this stage would be silly ...
After 7+ years I'm soooo envious. I'd be happy to get to 5 mg and would stay there for some time before even thinking of reducing.
You've done incredibly well! Congratulations. As others have indicated don't rush it now. I like 123 Mossie's approach, and like even more that she has a sensible GP.
Like you , I am one of the lucky ones so far. Diagnosed in June 2020 I am currently doing well on 5mgs and have been left to manage my steroid dose without any hassle from my GP.I have a telephone consult every now and then but have never been pressured to follow the
'guidelines'.
Reading your post I can only agree with all the other responses and I plan to stay on 5mgs for at least a month or longer before I wean any more and then only if I am completely pain free.
I expect to be on steroids for at least another year as even the smallest amount seems to keep PMR under control.
Such a low dose as you are on is not going to cause significant problems so dont rush or push through this last hurdle.
I hope your journey will continue successfully and wish you well !
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