I posted on here a bit ago and got some great advice.
I’ve now got a diagnosis of PMR and had started on 20mg of Prednisolone and am now down to 9mg and tapering down 1mg every three weeks.
My question is, will PMR ever completely go away? I’m 48 and can’t believe how this has affected me so much. Is there anything I need to be aware of or do? I’ve not got much in terms of answers from my rheumatologist or GP to be honest.
they just tell me to take pills and things will be alright.
I will say that when I started the steroids the pain went away pretty quickly but I’ve noticed I’m now getting stiff again and a bit of pain returning.
Any advice/ suggestions would be greatly appreciated
☺️
Written by
Margiepargie
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Maybe have a look at this link - hopefully will answer some of your questions - but would say, you probably need to slow down your tapering as it sounds as if you have gone too low.
You aren’t reducing relentlessly to zero, you are tapering down to find the lowest dose that gives you the same relief as the initial dose did. You have overshot that point.
I’d suggest you go back to the dose you last felt okay at.. if you know what that was. If you can’t recall, then maybe to 12mg. Then still reducing by 1mg a time for now, but every 4 weeks… and once you have got into single figures the recommendation is 1mg every 4-8 weeks.
As for your question will PMR go away - the answer is yes for the vast majority of people, it’s known as a self-limiting disease. But not one can say when.. might be 2 years, might be 4 years, might be longer… all you can do is manage it until such time as it does.
Have a look at the FAQs - you can see link under your post and in the pinned posts - and please join the charity -
From what my GP hinted at I assumed that I’d be completely off steroids by May next year. How can I get my GP to up my dose? They said my bloods have come back ok and to keep lowering every 3 weeks. They are not the sort to listen to be honest. Or should I just up my dose myself? I’ve done that in the past with my levo ( I have Hashimotos) might be easier than trying the GP.
I’m so much better than I was but I’m so tried and still achy.
Maybe they think that that will encourage us - it might, until the stuff hits the fan with a return of symptoms!
Having Hashimotos may well confuse the issue since pred can mask its state by having an effect on TSH and your numbers LOOK OK when you aren't as good as they suggest.
From what my GP hinted at I assumed that I’d be completely off steroids by May next year.
Unfortunately we hear that time and time again... and virtually all the guidelines/ information around keep repeating/re-inforcing the 2 year myth. There are some Rheumies/GPs who are more open-minded and there is info on the charity site challenging that view, but it's entrenched in too many minds.
Just to endorse what DorsetLady says, I was told by my GP at time of diagnosis that pmr “could last for two years, could be longer, and could be chronic”. From all I’ve read on this Forum over the last ten years or so, it seems that was a pretty accurate forecast!
In my case, I was on steroids for seven years and nine months, but, by very slow tapering down, and, by listening to my body ( no reduction if I felt any symptoms of pmr, and reducing by only half an mg at a time when below ten mg), I managed to avoid any flares.
Hi there, Margiepargie, I've had PMR for 7 and a half years and, to be honest, during that time, I have had more help from here than from my (very good) GP who was quick to initially diagnose me but she's become very hard to get into. This forum has been a lifesaver. The two or three Rheumies that I have seen have been (apart from the first one who went back to Jordan) a complete waste of time and money. You obviously need a GP to monitor you and to do scripts but I would say, trust this forum and your own intelligence. All the very best.......
Hi - sorry you have to join us but there are worse places to be with PMR than on this forum!
"they just tell me to take pills and things will be alright"
They do have such touching faith in their pills don't they? I'm afraid it isn't always as straightforward as they seem to think. But we have all been there and have learned a lot of wrinkles on the way.
But to be clear, the pred has cured nothing, it is a management strategy to combat the inflammation that is created by an underlying ongoing autoimmune disorder and is what causes the symptoms. It burns out eventually for the vast majority of patients but the timeline is unknown. The inflammatory substances are shed in the body on a daily basis in the early morning, renewing the inflammation unless you are taking enough pred to clear it out. If any is left over, then it will build up slowly over time until there is enough to cause symptoms again. As DL has said - you aren't heading relentlessly to zero - you are looking for the lowest effective dose, the dose that deals with the daily inflammation as well as the starting dose did, and that can be a very different thing. You start at a dose that will be too high - and taper slowly to find the right dose for you at any given time.
The way WE suggest going about it really isn't that difficult providing you remember that at some point the dose won't work as well and that is the sign you are around your right dose and a rejig is needed, it might mean going back to the previous dose. But that is FOR NOW. It doesn't mean you won't get lower, just not yet. Patience is required. You can't force a reduction in dose - PMR will always win. If you aren't on enough pred and the autoimmune bit is still active - there will be left over inflammation and like a dripping tap eventually fills a bucket if left, that inflammation will build up until you are back where you started.
I was 51 when mine started so not much different to you. But I wasn't diagnosed for 5 years which seems to have left its mark. The version younger patients develop can be a bit stubborn, often needs more pred and tapering to low doses can be harder. I took over 4 years to reliably get under 10mg. Needing more pred may be linked to us still having to work and being expected to do more as we are still young. And the expectations we and families set of ourselves don't help!
Thank you so much for your support. I just wish I didn’t feel so knackered all the time. Whenever I try to do something my heart feels like it’s pounding out of my chest and I’m done for a few hours. Now I’m not sure if this is the PMR or the Hashi’s or the effects of the steroids. My GP says to do moderate exercise and some weights. I was really very fit( kick boxing, fencing, cold water swimming , daily yoga and meditation) but doing the basic things is too much I feel. I have put on 8lbs in the last couple of months and really don’t want to put in any more. Is this normal?? 😞
On pred you mean? Not uncommon because pred changes how your body deals with carbs. Cutting carbs drastically often helps with weight gain as well as reducing the risk of developing steroid induced diabetes. Cut carbs - especially processed carbs (which also cuts salt intake as with pred that can lead to fluid retention, fluid is weight too) and added sugar. Limit root veg, most fruit, and cut bakery, even homemade.
Funny you should say that, I'm having another go with a CGM as I haven't lost weight for ages and I actually put a bit on over summer and I was curious why the weight loss has stalled. I thought having a little bit of carbs in the evening would be OK, but last night I had a little bit of brown rice, prob only about 3 or 4 oz and veg curry and my BS shot up into the amber zone very quickly. I can see now how the 'odd' sandwich, ice-cream, bag of chips etc over the summer months have all caused weight gain. Today I haven't eaten anything yet apart from a splash of milk in my tea but my BS has gone up from a starting point of about 5.4 to 7 and is rising so that must be due to the steroids
Wow, it’s funny how the steroids can have such a reaction isn’t it. I’ve never eaten in the mornings, just not me, but because I’m taking the steroids first thing I was advised to eat something before hand. So I’m now finding I’m eating quite a bit first thing, my appetite has increased so much.
Yes that's the problem, especially if you eat carbs. Steroids cause your blood sugar to spike, which creates hunger, so if you have carbs or sugar it spikes even more. See if you have somethng non carby eg a bit of cheese or egg or meat if that works better. Or nuts. For me personally, it might be different for you, I have to be careful in the 3 hours after taking pred, or 3-6 hour window if I put the Pred in gastro-resistant gel capsules as they have a delayed effect.
I’m usually pretty good to be honest. But since starting on Pred I just want to eat all the time and I don’t care what it is ( which isn’t like me at alll)
Unfortunately steroids increase your appetite so yes I'm afraid you're going to have to be careful what you eat. As PMRPro said, manyof us find that doing low carb eating helps control both appetite and blood sugar spikes, which cause more hunger. If you do a search in the FAQs I'm sure it will come up with relevant posts including many of mine probably. If you find that willpower please send me some because I struggle.
It does help if you cut the carbs - eating non-carb snacks won't raise the BS so much, won't trigger insulin production that makes the BS level crash - which is what creates the craving for carbs, and so the process starts again. Break the cycle and it will get easier.
Just reading through the comments , I know exactly how you feel, when i first started pred i thought it was in my head at first , i was starving all the time .I just could not stop thinking about or eating constantly ! I put on a stone in weeks , i was then on 20mgs. It was so hard as the cravings were constant, good news is as i dropped lower the cravings got less. I sadly have not been able to lose the weight as ive had 2 hip replacements in just over a year so my walking is minimal. Good luck ,when you see other people in the same boat it helps.
Ah - that's interesting. I was going to ask about fruit. My bs has just shot up into the diabetic range (well, I think it has been steadily rising actually, but I hadn't been warned of that!!). I'm 5ft 1 and 8st 2lbs, so hadn't seen myself as potentially diabetic (thanks preds!!) I had put myself on a low carb / low sugar diet about 10 days ago, when I read so much about that on this forum (should have been when I started the preds, but there had been no mention of that from the GP when PMR was diagnosed!!) We do eat a lot of fruit though, and I had wondered about fruit, and root veg (and it's roast parsnip time of year!!😋😏)
So any more advice on diet would be welcome. I have to go back to the surgery for more blood tests next week and then an apptm with the diabetic nurse the following week, when she'll have the results of the latest blood tests.
You don't need to join anything or pay anything for the basic information and you get some recipes includes, you can joint and get more I think but there are low carb recipe ideas all over the place on the internet. I think their visual guides are so easy to remember!
It is indeed roast parsnip time - roast parsnips are at least slightly better than spuds!!!!
It will take a couple of months to make much of a dent in that Hba1c as that reflects the average BS levels over the last 3 months. But it can be done. Koalajane reversed her Type 2 diabetes with low carb and restricting eating at specific times.
Hi MargiePargie. Studies show only 25% come of and remain off pred within 2 years. 30% come off but 5% are back on within 2yr timescale. The medical prof tells us what they think should be the norm (the balance between the benefits and harms of steroids). I am reducing at a quicker rate than advised but I am on a rigorous anti-inflamatory diet, I exercise and take supplements (in my case curcumin and Omega 3). Psychologically, feeling in some control is important for me. I haven't cracked sleep (3.30am wake up) at all (so risks there) and I've yet to be seriously tested with stress; you will read on here that this is a major trigger for a flare but I am practising breathing now to be more ready. There are many different views about what works on here but everyone is clear, it is about what works for YOU. I find this site v helpful and feel people are travelling with me on this journey. Good luck.
Thank you so much for your reply. This really is a bit of a minefield isn’t it. This all the people on this site have been amazing . Thank you again 🙏🏻😊
As everyone else has said, that tapering regime is much too quick. My GP was very happy to let me take charge of my own tapering plan and I was off steroids after three years with no issues. I did a 10% reduction every four to five weeks, slowing down towards the end. She never questioned my prescription requests. I am also on levothyroxine for an underactive thyroid. Follow all the advice here and fingers crossed you’ll be one of the lucky ones for whom PMR goes into remission and life gets back to normal - but take it slowly. Good luck xx
I had the same problem recently. My GP (who thankfully was hoping to find a level that would control my symptoms) had gone off for a month. I had to consult a younger doctor who turned out to be very anti steroids. He wanted me to get to zero ASAP, but the symptoms returned a few days later. Thankfully my own GP is back now, so the nonsense has ended thankfully. We all know the potential for side effects of steroids, but as of now, they are the only thing we have to help us function
Hope the young doctor has been educated on the role of steroids in PMR and GCA, He can be as anti- as he likes but they are the only option for PMRGCA and that matters when it is GCA in particular.
It sounds like you have reached the dose that no longer contains your symptoms. Try going up 1mg and see if things stabilize. 10mg is a common place to get stuck. Stay there for 4 weeks if it settles things. Then try again but slower… 1/2 mg and if the pain comes back after a week or two, your body is not ready. Also look into the Dead Slow taper pinned in this forum.
I found the steroid symptoms were much improved under 7mg and you are close so be patient!
The bit about PMR burning out by May is rubbish. Every person is different and while there are some who are off in 1 year or 2 just as many of us are still here years later. In fact some of the experts in PMR keep patients on low dose prednisone for life. In the US they are not so kind about allowing us to manage our dosing or even being diagnosed under age 50 unfortunately. I was diagnosed just shy of 49 and am down to 1.5mg now… 5 years later.
I will say well you've reached a great site to begin with! This forum was a life saver for me when I started out with PMR 6 years ago. I think you may be tapering a little too quickly but will let the others add their thoughts. I am still learning more and more about PMR. The other thing I did at the beginning was purchase the book from Amazon Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition. Paperback – May 29 2016
by Kate Gilbert PhD (Author) Good luck with your journey!
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Newly diagnosed PMR, tapering regime 
Newly diagnosed PMR
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Newly diagnosed with PMR and thank you for all the info here
