Hi all. I was diagnosed with PMR in November after feeling more achy and sore than usual over a few weeks. It gradually progressed until I was in severe pain in my bed at night, could not turn over etc. Dressing was painful, was hard to brush hair, get in the shower, having a bath was a total no go, as there was no way I could get back out!!!. I just thought I was getting old (I am 62, and very active) and was horrified by the fact that this was how I was going to be for the rest of my life. I got a very quick appointment with my GP after speaking to them, who took bloods and suggested starting steroids, which I was initially hesitant about (I am a retired pharmacist), but ESR came back raised so I started on 15mg which had an immediate effect. I have been reducing prednisolone gradually since then and am now on 8mg/day. When I reduced from 9mg to 8mg a couple of weeks ago I started to feel some slight pain coming back again and felt rubbish for a few days, but I was possibly overdoing things physically. I then started looking at some of the threads in this forum and realised that I had not really understood all the implications of having PMR or reducing steroids (despite my profession I had never heard of PMR or appreciated, in full, the challenges of reducing steroids in practice ). I have ordered Kate Gilberts book and want to find out as much as I can before my next scheduled dose reduction in a week or so as I am beginning to think I may need to have a chat with my GP about reducing more slowly.
I am a coastal rower, and am in training for the world championships in June/July so am a bit worried about symptoms returning. I go to the gym and in addition attend Pilates classes. All this has been fantastic recently as I experienced the euphoria and lack of pain courtesy of the steroids, but I am now getting worried that managing my PMR may not be as easy as I initially thought and was lead to believe.
Thanks for reading and thank you to everyone who contributes to this very helpful forum.
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Rowergirl
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The drop from 9mg to 8mg was too much for me. I had to go back up to 10mg for 2 months. I am now sliding down again in 0.5mg increments and finding that hard enough.
I slightly question your hope of being able to keep up with your sporting activites at this stage of your illness? I hope that I am wrong.
Hello, like seacat30 I do worry about the intensity of your physical activity. Sadly steroids can make you feel so much more capable than you are whilst simultaneously making your muscles less resilient to tough and repetitive strain, as does PMR. I didn’t realise my tendons were very unhappy until I got well below 10mg and came out of the steroid lala land. Luckily, in a way, I started on much higher doses for GCA so by the time I got to where you are I was fairly knackered and normal sporty anything was already obviously impossible. It is possible you had a bit of withdrawal but when niggles start up, you really do need to listen. I totally get that part of your life is so important, it was for me when I was diagnosed aged 54. However, you may have to decide whether this event is worth potentially spending your future musculoskeletal health on or whether you pull back this year and go into the boat house, weep and then regroup. As you’ll likely find, the lower doses are no walk in the park either if your adrenal function doesn’t return seamlessly as they don’t for many. Listen very hard to your body and don’t assume pains are the same breed as those before you got I’ll and can’t be toughed out. We do have a legendary forum user to whom we refer who went from wheelchair back to climbing major world peaks. It’s not necessarily all a miserable decline from here, but make sure to give your body a fighting chance and play the long game.
You should have been prescribed a VitD/Calcium supplement by your GP when he started the steroids. Please ask for them - it’s recommended in guidelines.
Hi and welcome - there is nothing for me to add to Snazzy's analysis. You will get back to it - but maybe not this year. Skinnyjonny was training for races and had climbed in the Himalayas when he was stuck in a wheelchair with PMR. He climbed Annapurna IV just before Covid.
Hi rower girl. Sorry you’ve had to come onto this forum, but it’s full of expert knowledge (& I don’t mean me!).
Since my diagnosis of PMR 2 years ago, I’ve lost quite a bit of strength but still manage to do my fitness classes etc without too much trouble. Your rowing sounds way, way more strenuous, so just listen to your body - and take notice.
It seems that everyone on this site was previously very active. Maybe that is a contributory factor. I hope you make it to your championships but sorry, that needs to be priority too. You can't boss PMR/GCA about, and it will always have the last laugh. On the other hand, I think you have done fantastically well to reduce so far in just 4 months.😀
I would also suggest you need to avoid too strenuous exercise unfortunately as you have experienced, steroids mask all pain at higher doses so we continue with our pre PMR activity levels without realising what long term damage we may be doing. My PMR pain kicked in again around 8-10 mg and has never gone away. Now I'm near 0 I really suffer with leg pain when walking - don't know whether that's PMR or muscle damage due to over exercising at higher doses of steroids. Extremely frustrating and depressing as, like so many of us, was active and loved long walks - you never know what to do for the best and everyone is different - awful disease
But you have continued to reduce despite the pain? You were never aiming relentlessly for zero - it is a process called titration where you are looking for the lowest effect dose, for YOU and YOUR PMR. Everyone is a bit different so there can't be a fixed "right" dose.
Welcome! As you have read, we are a supportive bunch who share our lived experience with PMR/GCA. We “get it” more than most others who don’t have these conditions.
Making adjustments with your activity and rest levels may be necessary to avoids the dreaded DOMS (delayed onset muscle soreness). In the beginning when I was at higher pred dose, I was so thrilled to jump back in a “normal” life that I immediately started in with house renovations, pickleball, swimming and walking. WRONG! Suffered after such activity and had to learn to slowly increase and rest days in between.
Due to nature of your training and future competition, finding a routine that would work for you is key. Given your last drop, I don’t think I would be lowering further until you get you abilities sorted out. Then again, because your re-emgence of symptoms were short lasting and at the beginning of your drop in dosage, it could be more pred withdrawal related. Paying attention to those symptoms/niggles is important. As someone who has flared 5 times in 4 years, I have learned to identify the “warning signs”
I commend you on your athletic endeavours and welcome your input on the forum given your work as a pharmacist. We all come from different places and spaces which adds to the benefit of this forum. Hope you will find “us” helpful.
I had the same effect when dropping from 10 to 9. I went back to 10 for a couple of weeks then started using a slow taper plan. Once I got to 8 I started to taper by only half a mg at a time. At first I was able to taper one mg, then half a mg per month, but as I got lower I tapered by half a mg every six weeks or so. (I was using the Dead Slow Nearly Stop plan, there are others but the principle is the same). I was able to taper to 3 mg by the end of the first year.
In your situation I'd reckon you need to be careful to keep your symptoms in check. You will also have to watch your activity level, maybe not doing some regular day to day things so you have the energy and muscle power to compete, or maybe only to keep training while you watch yourself closely to see how things are going to go. Prioritize what's most important and let other things go.
I know the others have warned you against competing. I'm certainly no athlete. However I personally did not find any problems with either physical activity or fatigue until much further along in my PMR/pred journey. Because I felt so much better I was able to start doing household tasks I'd pretty much given up, like vacuuming and lawn mowing (reel mower) and walking 10,000 steps a day. You know your body best, so pace yourself and see how it goes. But please don't push so that you injure yourself. If you had broken your arm you would have to pull back for a while to let it heal. PMR may turn out to be much like that for you. Best wishes.
Oh, one other thing, I mentioned fatigue coming later. With me it was really at about 4 mg, although I had some "adrenals returning" effects at about 7. If you carry on with training, whether or not you feel up to actually competing, you may have to adjust your taper schedule to avoid hitting a fatigue level just when you want to be at your best.
Hello Everyone,I am also new to this forum, I was just diagnosed with PMR in February 2022 by my Primary
Doctor, I was referred to a Rheumatologist and finally saw him in March 2022. He started me
on 15mg prednisone, stayed on it for one month, and in the last week have tapered down to 10mg. I started getting neck pain, headaches, fatigue and discomfort in my right eye. I
also started feeling some of my back pain and shoulder pain come back. I too was pretty active before I was diagnosed with PMR. I've tried to reach my Rheumatologist to see if maybe I should go up from the 10mg. to either 15mg or something else. Thank You to all who post. I truly take it one day at a time now. I had my Covid -19 booster shot in December 2021, and three weeks later I started with severe groin pain, then knee pain, back pain,
shoulder pain, I became basically crippled overnight, and eventually after getting an
in person appointment with my primary doctor, diagnosed with PMR.
If you’ve tapered from 15mg to 10mg in one step that’s much too quickly … is that what what happened?Sensible to stay on 15mg for a month, but then all that undone with reducing too quickly.
Recognised taper is 15-12.5-10mg -but even that’s too quick for some -so they only go 1mg a time (preferably a month).
Would be sensible to go back to 15mg -and then a slower taper.
As you’re new you might like to have a look at this -
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Newbie PMR here in the US with tapering questions 
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Wee update - still a newbie
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