Hi, after a massive flare up of pain in hips, I went up from 5.5mg to 10, then 12mg. I've been on 10 or 12 for 5 weeks and feel on top of the flare up now. I assume I won't be able to drop quickly to a lower dose having been up for this length of time? But can I drop more rapidly than 1 mg a month?
Thanks.
You may be able to.
Might be worth trying 12-10-8 at monthly intervals and then back to 1mg per month - but it’s up to you.
Do you know what caused your flare up - anything outside your illness?
If you say it was massive- it may have been building for some time, so I wouldn’t suggest you try and get back down to previous level too quickly. Ease off a bit when you get to 7or 8mg and re-evaluate.
Yeah I think there's more going on as well as PMR. Waiting a scan on hips and I've been referred to a rheumatologist...mixed feelings about this after what I read on here. I've been to a private physio who has helped a lot...I can walk better! He ironed out lots of lumps and bumps and I think he said nerves were affected, and the tingling in thighs has reduced. A GP I saw pretty much dismissed my concerns about the pins and needles. I'm recently struggling with anxiety and panics as well. I'm trying the headspace app which is helping.
Thank you, appreciate your reply
Hi Lynda, the pros have answered most of the technical parts of your question, but I have a comment about your anxiety and panic.
I have never been prone to anxiety and panic, however, after a severe flare last summer, I began to have what I recognized as Panic attacks. My pred dose was below 9 mg. I recognized the anxious feelings were associated with my PMR/pred, so could let them go. Eventually they did quit, but it was an uncomfortable time in my journey. It lasted for about 6 months or so.
Mostly, I am reassuring you that this aspect is also very likely associated with your PMR journey. I discovered a cup of valerian root tea was soothing, and helped me relax.
Kind regards, Jerri
PMR diagnosed 2013, currently 3 mg pred.
Thank you for your thoughtful reply Jerri. Since this recent debilitating pain, my thoughts have become ones of panic...not knowing what it is and why, is it PMR or not, when will I feel better, will it get worse, why is no one helping me etc I find I'm suffering what I now recognise as high anxiety. I don't feel in control of anything any more. One GP did say...don't underestimate the power of the mind...which I rightly or wrongly took to mean she didn't believe the pain and pins and needles etc were real!
I'm going to ask for a referral to the mental health team.
I will also get some of the tea you suggest!
I'm glad your anxiety has subsided....it's a tough journey isn't it.
It's so nice to have support on here, means a lot...many thanks Jerri
Personally, I wouldn’t risk it, especially as you experienced a bad flare before. I would creep down at half a mg using DSNS. It is better than risking another flare that might take longer to control.
Thanks Jane, always appreciate your support. See my reply to DL. I won't go too fast 
The trouble is that this sounds more like an increase in disease activity than a flare because you overshot the dose you need to manage the daily dose of new inflammation. If that happens you just need to take a higher dose for a short time and then you can go lower again though often not quite a low as you had been.
But when the disease activity ramps up you don't know what dose you might need so a slower reduction may well be needed - for the moment you could still need as much as 10mg or even more. Since it has taken 5 weeks to feel on top of it - my guess would be there is a high chance of that being the case.
Has the physio mentioned myofascial pain syndrome or a piriformis muscle involvement? Both can lead to nerve problems in the legs.
I think you have something about the activity going up recently. Some days I feel like I did at the start of PMR. I'll make my way down to 11mg and see how that goes, then try 10.
I mentioned the piriformis muscle to the physio and he showed me how to work on that and other areas. I'm back to see him in 2 weeks and I'll ask him about myofacial pain syndrome. The pins and needles seem to come on in the morning. I have this strange "need" to stretch my legs out when I'm waking up, which seems to start them off.
Along with all this I've no appetite, losing weight and a dodgy tummy. Im fed up of trying to work out what's going on and the latest doc is putting some of it down to anxiety... rightly so!
Once again thanks for your thoughts
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