I’d been on prednisolone since 15mg prescribed in 2018 until I managed to wean myself off them after 3 years, but only for 5 months when my symptoms returned and I had to go back on them at 15mg again.
Last August I'd weaned myself off them again and came off them, but think I was over optimistic again! By October I developed more pain in my hips, upper legs, upper arms and shoulders, but the GP wasn’t sure if it was PMR again as my bloods were clear, or arthritis or my prolapsed disc. (Btw I’d had the Moderna Covid booster in September).
The GP said best to try paracetamol x 8/day rather than rush into steroids again, while I have some scans and get referred to rheumatology. I have but minimal effect.
It’s now January, I’ve had blood tests, X-rays, ultrasound and physio, and there’s a 10 week delay in getting results in a letter from the rheumatologist! Meanwhile, walking is very painful and I still also have pain in my arms and shoulders so I’m convinced it’s PMR so I started preds 4 days ago, and regret not going back on them sooner!
I’m on 5mg and the symptoms are slightly better. But wondering, should I have gone back up to 15mg to start and then wean down again?
Sorry, long story!
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you need your doctor on side, but honestly I would. There is little point in under treating PMR, the inflammation just builds up again. Pred is a wonderful drug used properly, and you end up having less of an overall steroid burden if you take a proper dose and taper down gradually. There are examples of tried and tested taper programmes in FAQs on this website.
You may need longer on 5mg to get a grip of returned built up inflammation -perhaps give it another week or so.... ..if not, then you may more...maybe 7.5mg or 10mg...
Obviously you want more than necessary...but you do need to give it a fair crack of the whip - and I would say 4 days isn't that. so at least 2 week, and then re-evaluate...
..and as SheffieldJane says, GP needs to be contacted.
thank you , that’s useful. 2 weeks to get a phone appointment with GP, 10 weeks to get a typed letter from the rheumatologist (apparently they’re short of typists so I did offer to go in and type it up myself but they refused!). I’m going on holiday in 11 days so I’ve taken the bull by the horns and started them anyway. I will talk to the GP eventually but both GP and rheumatologist said they thought PMR was still there but that preds would mask any other cause of the pain so to try and wait until results received. That’s ok when there’s no time lag. I’ll give it a week and see if I need to increase, thanks for the advice.
No - if the 5mg is enough, no need to go up to 15mg, If the 5mg is slow you could take 10mg for a few days, drop back to 5mg and then even try 2mg - you were fine at those low levels before you stopped.
It is a very familiar story - 5 months is a common time for inflammation to build up enough to cause symptoms in PMR that is at a very low level of activity. That's partly why we encourage a VERY slow taper especially at the end. Then you catch it quickly when 1mg or even 1/2mg is enough to mop up tiny amounts of inflammation every day but zero lets it out of the bag. Once the accumulated inflammation is cleared out you will be back to where you were at well under 5mg - and it may well be you get away with only 1 or 2mg at most. If you are good at 1mg I;d be very tempted to just stay there. Prof Dasgupta told us he often keeps patients at 2-3mg long term as it reduces the risk of relapses.
thank you, that’s really useful, I’ve always felt pressured to get off steroids asap by the GPs, it’s good to get advice from someone who’s been through PMR.
This is all great advice! I was considered by my rheum to be resolved of PMR in '18, but then I got the covid booster in fall 2021 and it came back as neck/shoulder pain shortly after that. Been on smaller doses of pred for a few months until feeling better. Then, I fell and tore rotator cuff and bicep in Sept 2022 and had surgery November 15th. Within a month, both legs, hips and calves aching and my other (non injured) shoulder aching. My niece is a rheum in Florida and she said relapses are common after surgery,injury, vaccines etc. and to take 5 mg until I go to my Dr. The 5mg only helped a little and a month later, my own dr put me on a big dose pack and then down to 10 mg, where I am now, to blast it out (his words). This hopefully, will work. Will try the slow taper method as that worked for me years ago. These relapses make moving and life, in general, pretty miserable. NO more boosters for me!
You may be like some of us on this forum who have found that even a miniscule dose of pred is necessary for a lot longer than you'd expect. I only managed six weeks at pred zero back in 2020! After my initial taper, which took about two years, I've been at mostly 2 mg (sometimes a bit higher or lower) for most of the time I've been on pred. I started pred in 2015. Tapered by .5 decrements every three months that year when I tapered to zero, and even doing that, and thinking all was well, it wasn't. I did not, however, need to go back to the initial 15 mg. Took 10 mg for three days then dropped rapidly to about 7 and took many months to get back to 2 again.
I have been fighting this for 4.1/2 years and have unfortunately not had good experiences caused medics getting me to reduce prednisolone by too much too quickly. since joining the forum last year I have been following the advice to reduce reduce by only 10 o/o at a time every 2/4 weeks unfortunately for me after getting down to 7.5mg I very recently had another flare up and am now back up to 20mg which cross fingers seems to be working. Sorry I do not have a better story but from very many contributors they have had MUCH MORE SUCCESS and that I have resigned myself to the fact that especially in view of my age (78) I am unlikely to be free of PMR, therefore my ambition is to find the lowest sustained dosage that will keep me free from pain.
As an aside I had Covid last July at the time my symptoms were very mild. The give away was that for 7 days I tested BLACK indicating that I was carrying a very heavy viral load. A week later I thought I had got away with it but then things went wrong big time, with many of the Long Covid problems kicking in, some of which I am still battling with. The important thing I know is that the extra vaccinations I had due to my suppressed immune system SAVED MY Life. So when I meet anti vaca's I tell them VACINATIONS SAVED MY LIFE.
So listen to the voices on this forum They really do know what they are talking about and follow their advice on coping with PMR.
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