I find this forum invaluable. I was diagnosed with PMR last April. My ESR was high so doctor prescribed 20mg pred as a test for PMR. I wasn't completely convinced it was PMR though as I didn't have severe pain or stiffness - my main symptom was extreme tiredness. However I felt a lot better once i started the pred. After a couple of weeks I was so high and not sleeping so i reduced the dose to 15mg. On doctors advice went down to 10 but symptoms came back and ESR went up so went back to 15 for a bit then tried 12.5. Was OK on 12.5 until a point in October when I overdid things and had a slight flare. With hindsight I probably should have stuck it out but, without consulting doctor, went back up to 15 and then started reducing again following Dorset Lady's plan. Saw the doctor end November and said I was on 13.5 by that stage and he looked rather shocked! Just after Christmas I was on 12, ESR was low and I felt fine. I was hoping to keep reducing to 10 and then go back to GP. However since then I have dropped to 11 and after 3 weeks on 11 feel worse than I did pre diagnosis. I'd been seeing the doctor on and off over a few years about tiredness and by August 2016 was beginning to suspect Fibromyalgia. At that point all my bloods were normal. 6 months later ESR was high so i suspect the PMR was diagnosed in fairly early stages which may be why symptoms seem worse now. Also I think I had put things like aches in my upper back after walking a short distance down to general lack of fitness. These aches disappeared on pred so now I realise it was part of the PMR.
I have a phone consultation with my GP on Wednesday and am hoping he will order a blood test so I'm sticking it out on 11 until I've had that. I'm really fed up because I had started to lead a normal life again and now I'm back to square one. I don't have any nasty side effects on the Prednisolone, just feel better than i have for years as it gives me a bit more get up and go!
I've got a busy day tomorrow, 25 mile drive plus 5 minute presentation as part of an 11 to 3 meeting! I'm tempted to take a higher dose to see if it will get me through the day but don't want to affect results of any blood test
Is 12mg a high dose to be on for nearly a year?
Written by
Louisepenygraig
To view profiles and participate in discussions please or .
On the whole, yes, but I would say not really when you have been messing/messed about and ending up yoyoing the dose - it always ends up causing problems. And you are still working and that almost always means someone needs more pred to be able to cope than the older lady who is retired and can say sod it - I'm staying home today and resting.
The back problems COULD be myofascial pain syndrome, not directly PMR but often found alongside it and it responds to higher doses of pred, returning as you reduce the dose. That can be better dealt with directly - manual mobilisation of the trigger points (which happen to coincide with some of the fibro trigger points), massage and, for some people, Bowen therapy. All are accessible without having to beg from a GP. Once mine is sorted out I manage the PMR well on a lower dose of pred.
Thanks PMRpro. I'm not actually working - I've been retired now about 12 years. No way could I work. At the start of this journey there were times when I was too tired to cook dinner, even putting a frozen pizza in the oven then getting it out and dishing it up could feel a bit much! That hadn't been a problem for a while though until the last couple of weeks. I'll look into the Bowen technique. I know someone who does it but not sure how far I'd have to travel
In that case, my personal feeling is that you need to find the dose that works at present - which sounds like 12mg - and get stable. Then try reducing 0.5mg at a time - and even slower than DL's basic plan. And don't panic and go back up - rest instead and see if that works. If it doesn't, stick at the doBut big drops and doing them too often just ask for trouble.
I've posted somewhere else today - it took me over 4 years to get reliably to below 10mg. If you don't absorb more than 50% of the dose you take then obviously you need a higher apparent dose than someone who absorbs 70 or 90%.
Regarding extra pains, heed PMRpro's words. I had such bad hip pain for a couple of years before diagnosis that I thought I was heading towards needing a new hip, but an x-ray showed no bone problems. This pain vanished after PMR diagnosis and pred, and returned as my dose reduced. But a physiotherapist did various procedures, especially "dry needling" but also a little gentle (emphasis on gentle, do not go to a chiropractor) manipulation, and I used to lie on a hot water bottle at night. It didn't take long for this pain to go, and it hasn't returned, three years now
Arguably the fact that you still require 12 mg after a year makes you atypical and as such it needs investigated as per the clinical guidelines.
What you have to ask is were all the PMR mimics reliably excluded at diagnosis and do you have large vessel involvement which is only found when Dr’s go actively looking for it.
I started at 20mg last April too. My G.P. had me drop to 15 after 4 days! I stuck it out for a month, but things were clearly creeping back. I returned to 20 for about 3 weeks (GP threw hands up in horror!) Both GP and rheumie have wanted me to drop by 2.5, I tried to 15 it failed. I tried to 12.5, it failed. I flared again at 10. I was at 12 again mid December when I saw rheum, she did another raft of blood tests to rule stuff in/out and I had a CT scan (all clear). By Christmas I was so ticked off that I gave myself a holiday! 15 for 4 days, 13 for 4 days, then back to 12. Then 1st January dropped to 11. Now two weeks into 10mg.
If I’d dropped by 1mg per 4 weeks right from the beginning, I’d be in the same place I am now (more or less), but I would have avoided steroid withdrawal pain, flares, frustration and tears! And my poor body wouldn’t have suffered all that yoyoing.
When I have a busier day ahead I try to build in a prior compensation, such as a long lie in if I’ve got to do something in the evening, or even a duvet day before lunch out the next day. That also gives me the opportunity of resting the day after as well. I have found that there must be rest days in between activity days. I don’t want to mess about with my pred dose anymore than I have to.
I’ve never had raised ESR/CRP, so I am classed as atypical too. But it does mean that any pred reduction is controlled by me, as I’m the only one that feels the stiffness/pain. Took me a while to appreciate this fully. But at least my rheum has verbalised that everyone’s reduction is personal to them, which I find supportive, and she actually told me to slow down my reductions after my flare at 10.
So your 11mg isn’t a million miles away from my 10mg if that’s any comfort? Hope you settle and don’t have to go back up again, but if you do, you do. No point suffering pred side effects if the PMR is rearing it’s ugly head again.
I also get relief from using a hot-water bottle across my upper back, wedged between myself and the sofa back. By the time it's cooled down the pain has practically gone and usually doesn't return for quite a few hours, sometimes all day. I bought a heat pad but cannot get comfy with it.
Good luck for tomorrow - It's good to keep yourself busy - but not too much to cause stress!
I'm so glad I am part of this forum and even more glad I read this today. I've had a rough few days physically which, in turn, triggered my depression as it felt like I was going backwards instead of improving/stabilising but now I realise that I had simply been overdoing it. I know I should know this but sometimes I forget and need reminding. Feeling much better now. Thanks
Thank you every one, it was all very helpful. I went to the event today and it all went very well. I've not had much in the way of aches and pains today and, if anything, feel slightly less tired than I did this time yesterday! Maybe I'd just been overdoing things. I don't do a lot anyway but maybe I got over optimistic and forgot that I still needed to rest! Like purplegirl70 when I get rough days I start to feel I'm going backwards when it might just be part of the normal ups and downs of life. I do have SAD as well and I've had spells of aches and pains and low energy for years so it can be difficult untangling everything some times.
Hi I’m on 13mg after 11 months. Have got down to 10 mgs at one point but had a flare. Every time I got to 10mgs seem to flare. So this time I’m going down 0.5mgs at a time. May be slow but if it prevents problems that’s how it will be. I work as well so don’t get much time to rest as I would like. My ESR remains raised even now. All be it not as high as it was. Good luck and hope you feel better soon
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Burning scalp
After another opinion from the experts here ...
Flare has subsided--now what?
Update on possible COPD diagnosis 
GCA flare, or not?
