hello I’ve just joined this group in the hope that I can get some advice or at least some understanding of my situation! I was diagnosed with PMR nearly 2 years ago when I was 58. I’ve been on Prednisolone ever since, starting on 20mg which resulted in the usual miraculous sense of relief, and have managed to get down to 5mg. However, I just can’t get any lower. I’ve tapered and tapered, over several months, and was down to 2mg last week, but I have been in so much pain once again around my shoulders. It was making me feel really ill and fed up!
So, despite my consultant saying I’d be off it altogether by this August, I’ve just today decided to go back to 5mg. What a relief! I feel so much better.
I still work part time as a primary school teacher as well as being a single mum to a 22 year old young man with severe learning disability and I really struggle with both these jobs when I feel so stiff and achey. But I’m worried that I’ll never be able to get off the steroids! Any advice please? I’d be very grateful.
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Hi and welcome! You will certainly get advice here - and from people who have been there and got the t-shirt at least! Some made the film ...
Unfortunately your rheumy made a claim/promise that wasn't in his power to make. PMR is a chronic disorder and it takes as long as it takes to burn out and go into remission. About a third get off pred in 2 years - and the ones who get off sooner are at a higher risk of relapse than others. That means the majority need longer - sometimes a bit longer but sometimes a LOT longer. We reckon 4 to 5 years is a much more likely duration of pred management. This isn't necessarily because PMR lasts that long but because after the PMR goes into remission - and that doesn't happen in 2 years - your adrenal function which has been in hibernation while you were at higher doses of pred then has to wake up again and that doesn't always happen without a few hiccups! So there are 2 aspects to the last 6mg or so - is it enough to manage the inflammation AND have your adrenals woken up.
You are never reducing the dose relentlessly to zero - you are tapering the dose slowly to find the LOWEST EFFECTIVE DOSE at any given time. In the earlier stages of PMR you need more, over time the amount you need usually decreases and you are able to reduce the dose without symptoms returning. Half of patients take about 18 months to get to 5mg - so half take longer. You seem to me to be about average on the curve. And in addition to that - you are in a pretty stressful situation. We tend to notice that anyone who works tends to need a higher dose and you have two demanding jobs.
Quality of Life is the primary aim - both from the pain and disability aspect and the mental health aspect. At present you need 5mg - and that isn't a failure or an outlier. You are doing pretty well I'd say.
Thank you so much for your detailed reply. It’s so good to hear from someone who knows what they’re talking about from personal experience instead of just a health professional. What you said makes perfect sense- so I’m not necessarily aiming to get off it altogether yet, but to find the lowest dose that is appropriate for me to enable me to function pain free. 😊
PMRpro has given you good information and advice…and I’d agree return to 5mg…. and stay there for a while., a. to get your PMR under control, and b, to help adrenals.
Obviously you’re not ready to reduce. It’s not a race. I went thru same thing and my rheumatologist was always rushing me to go lower. After many flares from reducing prednisone too fast I realized I need to stay on the dose where I have no pain. Then after I had no pain for a month then I reduce only 1 mg
I only reduced dosage after 4-6 weeks of no pain
I’m now on 1mg with no pmr pain. I go completely off In January.,,,,my biggest problem was I was soooooo exhausted from adrenals trying to wake up. Wow I thought I would never have strength again but my strength finally came back. So I hate to say it but don’t listen to rheumatologists who want to rush you. I know my body and followed my pain level. I had a 2.6 year battle but now feel almost normal and hope it lasts!
I’ve been back up to 5mg twice in past year, & slowly made it back down. Suffered a lot of adrenal problems, & PMR obviously not giving up! I’ve had some shoulder problems for a week now, & may go to 3mg for a few weeks. I’m trying not to go back to 5mg for a fourth time, but don’t regret going back up & slowly down again. Patience is needed, & I will win! I’ve been stable on 2mg for months now, until a week ago, but I’ve been too busy, no rest, lots of medical stress with other diseases. It’s not a race, & quality of life is important, I believe. Good luck!
I was diagnosed 2 and a half years ago aged 60. After reducing fairly comfortably at first I plateaued at 3.5mg forover a year - I couldn't get below no matter how slowly I reduced. I realised (despite all the excellent wisdom & advice on here, it took experience for the penny to truly drop) that PMR was setting the pace, not me. Eventually I was able to lower the dose more - I try steps of 0.5 mg over about 2 months - and am currently reducing from 2 to 1.5mg. Managing my own expectations has been a steep learning curve. If I am down to zero by Christmas 24 I'll be delighted but it might not happen. I'm a lot more chilled about PMR since having cancer last year - it really stopped me fretting about pred doses!
Sorry to hear of your difficulties, but you’re not alone. Many of us have been on pred for some years and the 5mg point is a real tester for some. I got past it once, last year and tapered to zero. Ignored the aches and pains and within two months it was back with a vengeance and I had to start again. I’m down to 5mg again, but stuck. Had a flare after a covid booster last month and had to increase dose for 10 days then drop to 5mg again. I’m staying at 5mg and when I start to drop it’ll be very, very slowly over many months at half a mg a time. Even that half mg can make a big difference.
PMR is the beast that keeps on giving. It has a mind if its own and won’t be tamed. Your body will tell you if the inflammation is active because you’ll ache. Don’t worry about timescales; they’re different for everyone and it’s not one size fits all. Accepting that it’s a bit of a bumpy road helps manage expectations. A relatively pain free quality of life is important, especially with your caring and working needs. Good luck and best wishes.
Sometimes Rheumatologists can make us feel as though we're failing if we don't reduce pred in their accelerated rates of time. I know mine harps at me. Quality of life is extremely important and you've done well with two very important jobs. If 5mg is your number, then so be it. All the best Apple.
I was diagnosed April 2019, lots of ups and downs, but now tapering to 4mg.I am currently tapering by a quarter of a mg which is working well. Prednisolone is available in 5mg, 2.5mg and 1mg uncoated tablets. You can half any of those to cover any combination you might need.
Is 5mg so bad? If it buys you being able to move, without pain, to do your exhausting but rewarding (I'm guessing) job and look after your son in a fulfilling way? You're actually doing quite well. Maybe if you could get a DEXA scan you might feel reassured that your bones are in a reasonable state and rest more easily with the Pred, then try tapering to 4.5mg in a few months? (I'm on 3.5mg now, of course I aim to get off the steroids but I don't feel rushed.). Keep well.
My daughter in law developed Lupus at 16. The disease has many similarities to PMR and the treatment is the same,steroids. She went into remission in her mid thirties,she’s 44 now, and is still seen by her specialist yearly but has had no flares since. He gradually reduced her doses but increased them whenever it was necessary to keep the inflammation at bay. She still has dexa scans and blood tests but everything seems fine. So when my rheumatologist tries to tell me I’ll be pain free in 2 years I think I’ll have to be exceptionally lucky. The fact I’m taking steroids will hopefully one day lead me to remission,but if it takes time I’ll stay patient. Taking meds for any length of time is scary but if it’s the way forward I feel we need to embrace it and if I have to stick with a low dose for the rest of my life so be it.
I don't have mush else to add other than to say, after six years I'm still here! Don't let the Rheumies push you along too fast. Easier said than done I know because for me, even the low level of anxiety I experience before impending consultation can upset me. Everyone's PMR is slightly different. Better to chug along slowly than yo-yo your Pred dose up and down.
thank you everyone for taking the time out of your busy lives to reply to my query. It means such a lot as I’ve never met anyone who even knows what PMR is, never mind who actually has the condition. I didn’t realise it was going to be such an up and down condition but am now understanding that I don’t have to be in pain- that’s what the steroids are for! I got the strong impression from the rheumatologist that I should be steadily decreasing the dose and I shouldn’t still be on them almost 2 years later. Nor did I think about splitting a 1mg tablet to decrease more slowly. This forum is much appreciated 😊
I got the strong impression from the rheumatologist that I should be steadily decreasing the dose and I shouldn’t still be on them almost 2 years later.
Unfortunately that’s not an unusual response - and not only is it wrong for some people [although correct for others ] it puts pressure on the patient from the get go - and if they cannot comply they begin to feel disheartened and a failure.
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