Just joined this site tonight after reading some of your stories.
I’ve just been diagnosed with PMR and this has been a valuable insight into what to expect next.
I have been on steroids now for 7 weeks, having gone from 15mgs down to 10mgs this week.
Starting to get a few aches and pains but going to persevere and hopefully get through this knowing how I’m feeling is normal.
I woke up in February with neck pain and from then it’s just been a downhill struggle. I am an active 53 year old with 3 boys the youngest of which is 15. I’m totally into fitness so when this hit me I really didn’t know what had happened and couldn’t explain how I was feeling.
It got so bad I could hardly walk and getting in and out of the car and doing normal day to day things was unbearable.
I have also suffered from brain fog for some time now so not sure if it has been there for longer but just put it down to age and stress at work.
After three days on prednisone I was back to normal. I was really scared and wary about taking steroids however I am so glad I did. The pain was just getting to much and I was starting to feel really down so the benefits for me outweigh the possible side effects.
My eyes have felt strange and blurry however I have had them checked out at the opticians and they are fine so not sure if this is normal or I am just imagining things.
Hopefully things will keep going the way they have been but it’s good to know I have abit of support as when I speak to my husband about it he just says is that not how most people feel?
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Charliegirl123
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I am so sorry you have been diagnosed with PMR, but you seem to be coping well. One thing I have discovered with PMR if you start getting PMR pain don't try and live through it, the PMR will win.
I agree with Piglette. You need the dose you need. It doesn’t work to power down through the doses and’’live with’ pain/discomfort. It will just get worse. You should always have the same relief you had at the highest dose. If you continue to fight the PMR the inflammation will keep on building up and you will eventually need a much higher dose to zap the inflammation. What was the last dose at which you got the same relief as you had at 15mg?
The other possibility is going down from 15 mg to 10 mg means you will suffer steroid withdrawal ( similar to PMR pain). This pain usually settles in a few days.
I think the most likely scenario is that in going down by 5 mg you have overshot the dose which deals with the inflammation.
It is really hard at the beginning to come to terms with the fact you have a serious illness. Harder even for those of us who are fit/sporty. We feel we can ‘beat it’. It doesn’t work like that ...I wish!
The wisdom I have gleaned from this forum is never to reduce by more than 10% dose.
I am 4 years in to PMR now, and am a bit stuck on 6.5mg, but feeling much better than I used to. Back to a more normal life.
Your story so rings a bell for me! I am 54, very active and my youngest is 19. Life was becoming impossible without the steroids and really there was no option. I was diagnosed in July but went from 15 to 12.5 to 10mg and am currently on 9mg. Last month I did a bike packing tour with something like 250 miles and 30,000 ft of climbing... on an e-bike in eco mode to make sure I didn't hold the others up.
I have kept a detailed diary and I relate to anxiety over those aches and pains and whether they are meaningful and whether it is the PMR coming back. I would more say my aches and pains are twinges or deep hot scratchy feelings, in my hips usually, that come and go quickly. Not stiffness. (My hips were where my PMR first presented, with bursitis/ tendinopathy, and then shoulders and then neck so I may be back to front to where you get your aches and pains).
Feeling those twinges and pains I have almost abandoned dose changes but in the end ploughed on through because my ESR and CRP had dropped so low (ESR 2 or 4 and CRP <1 from a starting point at diagnosis of 36 and 17). I think for me that has been right because my feelings are so variable. I seem to get a period a week or two after a dose change when I feel amazing and bursting with energy and then the twinges start to build up again. I get a blood test and it is so low I drop anyway and then a week or two later I feel amazing again!
I'm surprised you didn't go via a 12.5mg dose though. All the guidelines seem to have that in. I sometimes feel a bit shaky after my dose changes so dread to think how I would feel with quite such a big drop all at once.
I think one thing to remember is that everyone has slightly different experiences and you are on a mission to work out what is right for you. I am still early on my journey so I probably have a lot to learn. I'll be interested to hear how your experiences pan out.
Could your blurry eyes be dry eyes? Is it like mucus blur that goes away? I think I have started getting that recently.
Hello, I was 54 when diagnosed with GCA so I know what it’s like having family stuff and work that keeps on going demanding whatever. I also understand what it’s like having fitness clobbered too. I would however, caution against keeping going with the Pred as a prop as most likely you’ll hit the skids again. A taper that fast is also a bit risky if your body isn’t ready it isn’t ready. From 15mg I did 0.5mg every 2 weeks until I got to 10mg and only if I felt well after withdrawal symptoms had gone. This isn’t about being a domestic warrior powering through bravely to keep your life going and not letting others down. Something has to give, preferably not your body as you risk GCA and inflammation in larger vessels. Time for everyone else to step up to the plate. Oh yes, your eyes. Pred does affect the muscles that focus and you may find that keeps changing. Also, it can dry out your tear film so you might need some drops.
"After three days on prednisone I was back to normal"
And that is your guide - you shouldn't start to feel any worse than that as you reduce at this level at least. There is no rush - and you are being rushed. In tapering no reduction should be more than 10% of the current dose - because it isn't the same as reducing to get off pred. You are looking for the lowest dose that manages the symptoms as well as that starting dose did - and in the early stages of PMR that is likely to be a lot higher than it will be later. By reducing in small steps you will find that dose more accurately - 10mg may not be enough but even 11mg be plenty. By dropping 5mg at a time you may have missed that.
Welcome to the forum. I’m so glad you’ve found us, and that pred is helping your symptoms.
In the early days there are so many emotions we experience related to our diagnosis and what’s happening to our bodies (symptoms, medication side effects), and our mental state (dealing with a diagnosis, less abilities physically, how others relate to us post-diagnosis).
I was just 55 when I was diagnosed with PMR. I had been through 6 terrifying painful months prior to diagnosis. I had also just gotten married, retired and moved and was very angry this was happening. I denied I had PMR thinking the Dr. May have gotten it wrong. I was sad to learn I’d be dealing with this for years, not days or months.
Acceptance came and so did peace! Remember that you can make adjustments in lifestyle and slowly work up to more physical activity. As well, a slow taper of your pred dose, guided by your symptoms will serve you well.
Wishing you the best moving forward. Raising teens can be challenging at the best of times 🙂, however now you must be kind to yourself and hopefully you can chat openly and honestly with them, about your condition and how they can help you best to cope, while assuring them it will be ok. And I believe it will.....I feel SO much better almost 2 years into my journey.
I was young when I first got PMR (51) and people just didn't understand. They thought I was a whingeing hypochondriac 'laying it on', even though somehow I managed to continue to work. If I said I was tired I'd just get 'we all are at our age'. Keep going, things will get better., and come on here for support, we get you!
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