I'm currently on 6.5mg Prednisolone, I've been gradually reducing from 15mg a year ago, but seem to be stuck here. My question is, after looking at the NICE guidelines, what is the definition of 'managed' pain? I am in pain, shoulders, neck, ribs, occasionally hips, but it's not stopping me doing things; work, cycling, walking etc. I want to get off steroids, but I'm unsure if the pain means my adrenal glands are not kicking in. Do I have to be more or less pain free before I can drop the dose, or can I drop until I can't cope with the pain? I'm in the UK and I've had PMR for 2 years.
Thanks 😊
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Madcatlady7
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To me, your symptoms means the pain is not ‘managed’.
Whether it’s totally PMR not sure, could be DOMS (delayed onset muscle symptoms) if you are not taking enough rest between your activities.
Your muscles are compromised with PMR - so need time to recover.
“I want to get off steroids” - doesn’t everyone? But if your illness is still active (and at 2 years that’s extremely likely) - you need the steroids - and more importantly the correct to manage the inflammation/pain. That, plus maybe amend your activities, and see if that makes any difference.
I have had my PMR diagnosis for almost 4 years. My criteria has been stricter than yours and I remain at 4 mgs. I have been looking for signs that my pain and mobility is relieved at least by 70%. You are lucky being able to manage such a range of activities. With me, I expect that other conditions come in to play as well as well as age and general fitness. Is your pain linked to physical activity at all? It is unusual but not unheard of for PMR to go into remission in 2 years. The median duration is 5.9 years. I have had a Synacthen Test for my Adrenal function and failed it. Once I got to 4 mgs another test showed a normal capability for functioning. I have struggled with fatigue since 7 mgs where I stayed for a year with several failed attempts to reduce. It has been the hardest time apart from the beginning ( I started on 20 mgs and may have gone undiagnosed for some months). Ideally Adrenal function should be tested at around 3 mgs for a more accurate reading. In your shoes I would taper very gradually to that point and perhaps seek a test if you don’t feel right. I would stop if your symptoms seem to be worsening and wouldn’t drop by more than 0.5 mgs. at a time. It is important to pace activity at this stage. Good luck! It is looking hopeful.
The pain is MUCH more likely to be due to the fact you have reduced to to low a dose to manage the inflammation. Whatever the status you managed to achieve at your starting dose - which should be well above a 70% global improvement in symptoms - is what you are aiming to maintain during the tapering to find the lowest dose that manages the symptoms. You should never feel worse at the end of a taper than at the beginning. You may not be totally free from pain but it shouldn't get worse just because of a reduction. Overdoing it will also cause pain - but that is a lifestyle adaptation, you have to do your bit too.
If you drop the dose until you can't bear the pain then within a short time you will be back to where you were at the start and were put on steroids. That almost inevitably means starting from scratch and it is often harder to get the inflammation under control again for some reason.
We would all like to be off pred - but you have to strike a balance: do I want to be in constant pain and limited in what I can do? Because that is the inevitable result of stopping pred before the underlying cause of the symptoms we call PMR has gone into remission. Untreated PMR is said to be 7 times more likely to progress to full-blown GCA and then the choice is stark: take high dose pred (40mg/day is the starting dose, anyhting up to 80mg may be required) or risk losing your sight.
I don’t have PMR and would describe my adrenal/withdrawal pain as a cloud of non specific pain rather than stiffness or focussed on particular muscle groups. If my experience is anything to go by (it may not be) your pain sounds a bit PMRish judging by others’ descriptions. Pain means inflammation with PMR, so it isn’t a case of pushing through as much as possible in order to get rid of Pred, you need to be reducing inflammation and pain is your measure.
That's a good description of withdrawal pain for me. I just feel "bad" , grouchy, irritable for a day and then it passes but not every time. I find PMR hard to get a handle on, even after almost 4 years.
During most of the course of my PMR/pred journey I have used as a criterion that my pain had to be controlled, i.e., gone, for at least part of each 24 hour period. I was willing to put up with "niggles" for part of the time. I believed that this was keeping my dose at the lowest possible level at which it would be effective and prevent flares.
It certainly sounds to me that you are not taking enough pred at this time. In the end if you control the symptoms properly you will almost certainly end up taking less pred.
Me: 15 mg 2015, now at one half mg, with one relatively minor flare in 2017 caused by tapering too soon below a necessary maintenance dose.
Thanks so much to everyone who replied. I see the idea now and I realise I mustn't rush it. I'll go back up a bit and maybe use one of the DSNS plans in the link.
It sounds as if the PMR is taking over as you are on too low a dose. If you try and put up with the pain PMR will surely win. I have been suffering with adrenal problems and the main thing is deadly fatigue, I also feel whoozy when I walk anywhere and have actually fainted a couple of times. The symptoms are not really like PMR. We all want to get off steroids but PMR will stop you until it is ready for you to get to zero.
After 2½ years of PMR, I am down to 2½ mg pred. But like you, I was stuck a year between 7 and 7½ mg, when dropping a little lower brought back PMR symptoms with a vengeance!
Since then I have dropped ½ mg every 3 weeks. I have been entirely pain free once I sorted out my dose at 24 mg, 2 years ago, except for forgetting a tablet or tapering too quickly. I can exercise to my heart's content...and I do.
Thanks so much Joydeck. It brightened my day to see your message. I'm certainly also stuck around the same dosage. I struggled at 6.5 for 3 weeks and finally gave in after all the messages here; GCA scares me somewhat. I find excercise loosens me up a great deal. I also swim when my shoulders aren't too bad. I'm hoping the 2mg increase I've given myself will allow me to get back to swimming. I'm determined to keep active, at 54 I don't want to go downhill and not be able to get back up if the PMR goes into remission.
Don't ever struggle! Whenever I tapered too low, causing PMR symptoms in the outer shoulders, I immediately took an extra 4, 3, 2 and, just, 1 mg on consecutive days, leaving me entirely symptom-free once again. For two years, I have been without PMR symptoms 99 % of the time.
In the last six months, I have been pleasantly surprised that tapering, from 7 down to 2½ mg pred, has been trouble free.
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