I was diagnosed with PMR in April 2019, with all the characteristic pains and high blood readings. 15mg Pred gave me almost immediate and miraculous relief. I have tapered slowly but steadily since then, mainly using the DSNS system. It took a while to establish 7mg reliably, and again at 3.5mg, but I have never had a "proper" flare nor had to increase the Pred dose, just repeat the reduction several times to reach stability at the new reduced dose. I am now at 2mg, trying to get down to 1.5mg. However, despite three attempts at a DSNS reduction, I find I cannot stick at 1.5mg, and need to take 2mg and 1.5 mg on almost alternate days to keep feeling pain-free and active. I know that some rheumies recommend staying at 2mg for some time (or even for ever). My GP is leaving it up to me at this stage and I am under no pressure from her to reduce to zero. What advice would you offer? While I would love to be "Pred-free", it seems that there are very few adverse effects from such a low dose as 2mg.
Stay at 2mg or reduce further?: I was diagnosed... - PMRGCAuk
Stay at 2mg or reduce further?
Honestly, I would just stick at 2 mgs for now. Something may shift in the future but I’d say that you are in a pretty enviable position. I wouldn’t want to fall at the final fence having had such a smooth journey. It would be gutting to flare now. This tiny dose is doing something that you need.
Stay at 2mg for a while longer - as you have implied no adverse effects, and doing you more good than harm.
To be that low in 2 years is very good, so be pleased with that at the moment, many would be ecstatic!
You will get lower, but not just yet....you body is telling you it needs 2mg at the moment, so don’t push it and risk a proper flare.
Sounds like you’ve had an almost text book reduction up to now , I would be happy to stay at 2 mg, last thing you want to do is destroy all that good work you’ve done best of luck for the future and getting rid of that 2 mg, just remember the hare and the tortoise.
Yes, I agree totally with Jane. Don't be in any rush to get off 2mg. I too am envious. Like you I was also diagnosed in 2019, but Dec for me, although I knew I had something going on during the summer. I was started on 15mg too, but by the time I'd reduced to 8mg (now realising the rheumys reduction he gave me was far too quick) unfortunately for me GCA kicked in so was put up to 40mg. Since reaching 10mg I've started to do the dead slow and stop. Before that though I remained on each mg for a month. I'd love to get down to 2mg and would be happy to stay on that to remain out of pain. No major flares for me either, but I take heed due to GCA as that disease concerns me a lot.
Good luck
Anne
Sounds like I've had a very similar journey to you (although just 0.5mg reductions not DSNS) and I seem to be sticking at 3mg to 2.5mg drop. I had a single visit to a Rheumatologist and I just came across his letter back to my GP. Despite my text book symptoms and pred response he still held my age, 54, against a definitive diagnosis! He said that if I got stuck between 2 and 3mg to be sent for ultrasounds and MRI scans to look at various bursitis type things with funny names. It isn't clear what that is all about and I've never seen reference to that on this forum but I wonder if there is a thing there?
Have you got the names? Mind you, bursitis is a pathology in PMR so why look at it differently?
Ultrasound for shoulders - glenohumeral synovitis, biceps tenosynovitis, subacromial and sub deltoid bursitis. MRI for pelvis for synovitis and trochanteric bursitis.
All recognised as part of PMR! All mentioned in the first paragraph of this:
jrheum.org/content/jrheum/4...
Ah that's interesting. I wonder whether his thinking is that if you cant reduce around the 2 to 3mg mark the scans would confirm PMR rather than adrenal problems. And if adrenal indicated send you for a syntacin test
Possibly I suppose - but Prof Dasgupta says he keeps patients at 2-3mg long term as it avoids relapses. What he didn't say was whether that is in patients who have relapsed a few times below that sort of dose - but I do take it as a tacit admission that PMR can last a lot longer than they are willing to admit to patients who are only too well aware it can last a lot longer than their doctors say.
I do know my own rheumy says he has quite a few patients on pred for a long time, but usually at low doses he doesn't worry about.
I would be delighted to be on such a low dose , and would be happy to stay at that forever
Me too; diagnosed PMR Jan 2020 and I’m now stuck on 9mg after my doctor told me not to reduce any further due to very high inflammation markers. That was a month ago but fresh blood taken a few days since and I’m hoping for the all clear to restart the DSNS. 2mg would be a dream, like touching a rainbow. So envious!
If I ever get to 5mg again I'm staying there!!! I would stick with 2mg for now - and every few months try for 1.5mg and see what happens.
I have a friend who got off pred a few years ago but the stiffness and pain was back in a few months. She went straight back on pred, got down to really low and waited it out - and within a couple of years was totally off pred. It doesn't mean you won't get off - just not yet.
Lots of great advice from some very experienced people. It took me about 4 years to get to 1.5mg. I don’t know why but I tried at 1 and the pains and tiredness returned. After some toing and froing I found 5mg worked. I have settled at 4.5 and I am happy to stay at this level.
Hi,It's a no brainier to me. You stay at 2 mg for a while yet. If you get symptoms at 1.5mg, it's your PMR telling you it's not ready to go away.
I first got to 2mg in July 2019, and am now at a half mg. that doesn't mean it will be the same for you, but it just shows what many say on this forum - that the last reductions can be very difficult!
You've done really well so far. As they are telling us about Covid " don't spoil it now!!!"
Good luck
Paddy
My gp want to keep me on 2mgm for a year, if I get there. Tapering to 4 at the moment. I'd be ok with that.
Thank you so much to everyone who has replied today to my post. I know that I have been very fortunate to reach 2mg within 2 years of diagnosis and without a flare or any other major problems. I don't post very often but I read the posts every day and I have learnt so much from all the wisdom and shared experience on this forum. Without you all, I would have worried so much more about temporary side effects such as the hamster face, hair loss, sleeplessness, etc. etc. I must also give credit to my OH who has urged caution and slow reductions throughout, and has been willing and able to talk to my GP on my behalf at times. As a result, I have been able to stick with my kind and "listening" GP and have not needed to go the "rheumatologist route" at all. I will stick at 2mg for the next two months, and try a DSNS reduction to 1.5mg again in June. "Summer is acomin' in" and lockdown is easing. A very Happy Easter to you all.
Stay at 2 mg for a while, the plan you mention, to defer a further taper until summer, is sensible. And please don't expect the taper to remain at the same rate you've managed so far. I had a pretty uneventful taper down to 2 mg and actually stuck there, with the occasional attempt to get lower, for a while. I did get lower, even a brief flirtation with zero about a year ago. Had a bad flare since the new year and only now beginning to feel better, but just starting to taper from 7 to 6.5! I don't expect this taper to be as slow as last time around, but now I know that I almost certainly will have to stop at a low dose again and just wait it out. Two mg was where I had no side effects to speak of, and I'll be very happy if I get there again .
Not what you're looking for?
You may also like...
Reduced from 2mg Pred to 1.5
Is there any point reducing my Prednisolone further?
Reduced prednisone from 25mgs to 2mg
2mg Pred a disaster :(
Reduce or Not Reduce Prednisone
2mg to 1mg
Slowly reducing from 2.5-2mg need some advice please 
Hives and reducing pred
