Hi, I was diagnosed with PMR about a month ago. First dose of Prednisolone was 20 mg for 2 weeks, then 15 mg for 2 weeks and I am now a few days into a daily dose of 10 mg (been told by my GP to stay on 10mg for 2-3 weeks). I can feel the fatigue and aches are creeping back in my life again. Had a rubbish nights sleep last night, feeling exhausted today and my elbows and knees ache. I am glad I have found all you lovely people here in this forum, it helps to know I’m not alone! 😊
New to PMR: Hi, I was diagnosed with PMR about a... - PMRGCAuk
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BellaBoo61
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Welcome to the forum BellaBoo61 I’m guessing you’re 56/57? (Born in 1961? A year younger than me)
GP’s eh? Funny lot 
Hmmm, a few days into 10mg. How many days? There’s a difference between being on too low a dose, and your body reacting to a lower dose. Usually STEROID WITHDRAWAL happens in the first few days ( for me days 1-3) This is when your body screams HEY! Where’s my pred? Problem is those SW pains are virtually indistinguishable from PMR pains. SW pains do dissipate though, but PMR pains due to too low a dose tend to build gradually over time, from maybe day 7 onwards. Sometimes later. So you need to try and decide which it is and whether a few more days at 10 will calm things down.
That said.....a drop from 20/15 to 10 after only one month is probably a drop too far and too fast. Were you ok at 15? You might need to go back there, wait a while, then drop to 12.5 or even 14. I couldn’t even do the drop from 20 to 15, and had to go via 17.5 & 16. Were all different, you have to ‘listen’ to your body and work out the way forwards, hopefully with your GP’s help, but often not! (My GP’s plan would have had me off steroids in 43 weeks I think it was. Currently a year on pred and down to 9mg.) By using smaller drops, and taking 4 weeks between drops, you get less SW pain, and can more easily identify the level which is working for you. Galloping through the reductions means you have no idea what your ideal dose is, and have to go right back up to high doses and start again. Truly it doesn’t get you anywhere, just causes pain and anguish. Take it from me, I’ve got the T shirt.
Have you been referred to a rheumatologist? If you’re under 60 you should be in theory. But you know what theory did
Thank you Soraya_PMR! Yes, I’m 56 - was initially told by my GP that I was “too young” to have PMR, but after numerous tests (to exclude all the other sinister illnesses it might be) the conclusion was that it must be PMR (in addition to the pains and aches I have had for some time, I also lost a lot of weight - almost 30 kg, and I think this is what worried my GP) Anyway, have been on 10 mg since Friday last week so this is my 6th day. Will give it a few more days, as I have a feeling (hoping) that it’s just my body trying to adjust to lower dose. Have not seen a rheumatologist, no. Going for blood test and GP in week or so, so will ask my GP about referral.. Thank you very much again, you have been very helpful, I’m so glad I found you all here 😘
6th day. I’d lay odds on you being on too low a dose TBH. SW would have gone or reduced by now. If you do have to increase, don’t fret. There’s a feeling of having ‘failed’. But this is not so, PMR is in charge, not your GP, not you unfortunately, so don’t beat yourself up! You might want to discuss with GP prior to the planned appt. before pains run away with themselves.
‘Too young’ yeah they don’t like admitting PMR, but tell doc to read the guidelines
Hi,
With three and a half years experience with PMR, I'm inclined to think you have tapered down to too low a level too quickly.
I think that normally, one would have expected you to remain at your 20mg starting dose for some four weeks to get the inflammation hopefully under control. Thereafter the perceived wisdom is to reduce by no more than 10% provided you feel OK to do so. So, 20mg to 17.5mg in the first instance, and again leave it that level for three to four weeks before tapering further down
I hasten to add that I am not medically qualified in any way, but I do have some knowledge about how PMR works. Perhaps you should consult further with your GP.
Finally, as you are new to this illness, you will need to take it easy, and give yourself plenty of rest. PMR does change your lifestyle, and if you try to do too much, then I suspect you will have cause to regret it; that has certainly been my experience!
Good luck
Paddy
Thank you Paddy, you certainly have long experience with PMR! I hear what you’re saying about taking it easy, I found that I had lots of energy on the higher dose of Prednisolone (which I quite enjoyed..) but this has slowed down now. I still work, but finding this harder now as I tire easily. I’m guessing this will sort itself out once I’ve managed to control the symptoms and find a dose that my body is happy with.. Fingers crossed this will happen soon. Thanks again 👍
If you are working you will almost certainly require a higher dose of pred to manage than if you weren't. And whatever dose of pred you end up on - your muscles remain intolerant of acute exercise. That must be managed by pacing and resting appropriately:
Hi Bellaboo61 and welcome to the site. It will help honestly- so much.
I started on 20 mgs Pred in March 2016 and stayed on it for about 6 weeks because nobody told me squat diddly about tapering. I learned everything on here and did a very slow, slow taper to get to 10 mgs, where I rested for at least a month. I have crept down to 7 mgs and for the first time I feel stuck, even going down by 0.5. Reductions should never be more that 10%. I have stopped again because I really thought I was going to have a flare and end up right back where I started.
I suspect that you gone too low, too quickly and if I were you I’d go back to 15, let things settle, then taper down using tiny drops of 0.5 mgs.
This disease can be active for several years. We are seeking the lowest dose we can manage on, not racing to zero. There is no virtue in taking a dose that doesn’t control the inflammation, it just gets worse.
Thank you for your reply SheffieldJane! So glad I have found you. You might be right about the too low too quickly theory, I was happy on 15 mg, the side effects weren’t too bad and had no pain. I’m keeping an eye on things in the coming days, if the pain gets worse I will contact my GP, I’m hoping it’s just my body adjusting to a lower dose (although this didn’t happen when I moved from 20 to 15mg) Hey ho..
PMRproAmbassador
Um - is this the way your GP intends to continue? Because he's already gone too fast - and probably too far.
Recommended starting approaches are 4 to 6 weeks at the starting dose until ESR/CRP are low and stable and symptoms well improved. Then you need another month at least at the next dose down. Taking you from 20 to 10mg in a month is what you might do in an acute inflammation to reduce your dose to zero relatively comfortably after the steroids had done their job. You would do that in rheumatoid arthritis too, take out the inflammation and then reduce the pred once your DMARD or other RA medication had taken over again.
PMR is not RA nor an acute inflammation - it is a chronic condition where the inflammation is renewed every morning, caused by an autoimmune process that continues for, on average, about 6 years. As long as that is active you will need some pred to manage it and prevent the inflammation building up to a level that will cause symptoms. You are reducing to find the lowest dose that gives the same result as the starting dose - and while some of the guidelines will give the impression that you can reduce rapidly to 10mg/day, that only ever works when the starting doses were high enough and used for long enough to really clear out all accumulated inflammation, if the patient's disease activity is relatively low and they absorb a high proportion of the dose they take. Some people absorb 90% - others only 50%. The 50% people will need a higher oral dose than the 90% people. There are so many variables that it really does pay to reduce more slowly - or the poor patient develops a flare and the doctor panics and goes back to the beginning. Going more slowly in the first place avoids flares and the patient ends up taking more pred, not less because the reduction was OTT - but many doctors think they are inevitable. They aren't.
This may help
rcpe.ac.uk/sites/default/fi...
I think it is still a bit fast - but it is probably far more realistic than what your GP is aiming for. It is aimed at your GP.
The current Recommendations say a starting dose of 12.5 - 25mg, and they do say repeatedly that both the starting dose and the taper rate MUST be adjusted for the individual patient. But somehow - that escapes their notice.
rheumatology.org/Portals/0/...
Thank you so much for very helpful websites PMRpro, I shall read and learn! My gut feeling is that the reduction was OTT. Having a new blood test next week, will be interesting to see if ESR has gone down (well above 100 a month ago) Thanks again 👍
If you had an ESR of over 100 then he should have kept you at the starting dose until it was in normal range. Just because it is falling doesn't mean it will continue to fall. And 2-weekly tests would have been sensible to be sure of that and so he could then see trends.
Patience - seldom found in women, never in a man (and it wasn't me that coined THAT saying either!).
DorsetLadyPMRGCAuk volunteer
Hi, and welcome,
As others have said too fast a reduction in time and dose!
You may have felt alright from 20mg to 15mg, but I bet if you’d stayed on 15mg for longer than 2 weeks you would have got the feelings you’ve got now.
Have a read of attached, and try and persuade GP to reduce at monthly intervals - 2 weeks is not always long enough to know you are okay at that level before you drop again.
healthunlocked.com/pmrgcauk...
Thank you DorsetLady! I will definitely have a chat with my GP regarding reducing at monthly intervals. Feeling rubbish and weak as a kitten at the moment. Making me realise how well the Prednisolone worked (when it did work...) Thanks again!
Good luck with that chat!
I was on 20mg for 4 days! Yup! Then told to drop to 15mg and it all came creeping back 
so off to the GP I go...
Dr: well I don’t think you have PMR then.
Me: I think I have. I think I’m on a sub-therapeutic dose of pred which is not controlling the inflammation (I learnt this on the forums )
Dr: <throwing hands up in horror> (He did literally do that!) “Oh do what you like!”
So I did 
back to 20mg
Jeez... I was on 20mg for a whole week before I started to feel any better; felt spacey and weird but pain didn’t go until the 7th day. Felt best on 15mg (pain free, felt less spacey/weird)
Think my GP is slightly better informed than yours when it comes to PMR... 😐I mean, 4 days on 20mg does not sound good!
Have told her my biggest fear is the dreaded moonface and putting on weight, so think she is trying to help me avoid this by starting me on a low dose....
Discipline and cutting carbs is probably a better option!
I had a 3-4 hour miracle with pred (first dose 2pm, running upstairs by 6pm) and by next morning and second dose there was no stopping me!
Oh I feel sure, absolutely 100% sure that your GP is better informed than mine. Your supposition is bang on! And I’m not sure we’re only talking about PMR.
My rheum is more sensible though
20mg is not particularly low for PMR. Anything between 12.5 and 30 is suggested as a starting point. The reduction she’s prescribed is a bit dodgy though, and may not (probably won’t) get you to lower doses quickly as there’s always the chance of a flare. But little by little we try to educate our GP’s.
Best way to avoid weight gain is to cut carbs, not cut pred.
Me diagnosed 2 weeks ago. It has shattered my life restricting me so much. I am on 20 mg tried to reduce 2 days ago to 15mg couldn't move yesterday. Back up to 20mg. Really good to read your posts thank you
Hi Valentina1 I hope you feel better now that you’re back on 20 mg. I am new to this as well, and just trying to find a way to live with PMR that causes the least amount of stress (and pain). I think I will have to go back on a higher dose as well, as I’m getting breakthrough pains now after being on a lower dose for a week. I hate being on medication but realise that this is the only way forward. Good luck 😘
It will get better and if you reduce in smaller steps so will that!
In a few months you will look back and see how far you have come already and in a year it will be much much better. Providing you are sensible and your GP doesn't force you to reduce like that in future.
Show him this and ask him nicely to read it please:
rcpe.ac.uk/sites/default/fi...
Because it does sound as if he's trying to use pred as he uses it for anything else and that doesn't work in PMR. You need to be at 20mg for AT LEAST a month and 2.5mg reductions MIGHT work.
Your pain yesterday was probably more steroid withdrawal reaction than the PMR. But also you need to pace and rest, especially when youa re trying to reduce your dose.
Hi Bella
I did 20 to 15 to 10 in a month ( last December ) so maybe that's their current thinking ? ( I'm also 56). Sorry to hear the pains have returned especially if they are disrupting your sleep.
I think you should report back and ask them about tapering slower...
Saw the doctor yesterday and started new dose of 13 mg today, plan is (if well on 13mg) to reduce to 12 next week. Fingers crossed.. Had a much better sleep last night, so I’m hoping that things are looking up! How are you doing, are you still on 10mg?
We are all different. I was able to reduce (after a month at start) from 15 to 10 in once a week 1 mg steps. But when I tried to go to 9 I realized I had to move much more slowly. This is when I started the dead slow taper, which at least initially allowed me to taper by 1 mg per month. I may have reached my current best lowest dose (2.5) after nearly three years with a bit of a hiccup last year. When you reach the stage when you feel a slight return of your original symptoms, that's when you'll know it's time to slow down. Good luck!
Thank you HeronNS - I’m starting to realise that the whole key to wellness is a very slow taper as so many have problems when this is done too quickly. I will try to be patient and listen to my body! Thanks again 😊
If nothing else the PMR journey teaches us patience!
Have your docs told you whether long term use is okay below a certain dosage ?
My doctor told me when I got to 3 mg (the first time) she was happy with me at that level. She also said that 2.5 where I am now is fine. No worries at all. Yes I think it is generally accepted now that once you've got to the level which the body would normally make (of cortisol) the side effects become negligible. That said, bone thinning effects can still occur at very low levels, but as we know it's possible to prevent bone thinning through our diet, a few supplements when indicated, and appropriate exercise. Certainly it's nice to be below 5 mg. I didn't really begin to feel "myself" until I reached that magic 3 mg level, but I'm quite a small build.
what supplements did they tell you to take ? All I have is Vit D ! I do resistance training in the gym and feel much better for it
Here is probably more than you ever wanted to know:
Calcium and vit D I hope? And you have had both blood levels checked beforehand?
I've been reducing 1mg every four weeks so just started on 4mgs . Slight stiffness returning to my fingers in the morning but I can just flex it away so I'm not too bothered.My big sleep disrupting pains haven't returned altho I sleep less presumably because of Pred ?
Looking forward to being on a lower dose I must admit. Feeling a bit jittery and spacey on this med, and yes - I definitely sleep less on Pred.. But I suppose it’s the price we pay,at least the pain is (mostly) gone!
I listen to the radio from about 4:00 am. I'm very well briefed by the time I get out bed ! and then I try not to listen to any more news all day
"I did 20 to 15 to 10 in a month ( last December ) so maybe that's their current thinking ?"
Not in any medical literature I've read. Unless they making it up as they go along!
You might use that sort of reduction for any other use of pred, bronchitis, asthma, possibly an RA flare, but you haven't GOT "bronchitis, asthma, possibly an RA flare", you have PMR. And in PMR the pred is the medication that provides the symptom control and disease management - there isn't an antibiotic, asthma drug or DMARD to get things under control.
good point ! My consultant gave me the Pred as part of a process of elimination around what was causing my pains and she's been rather pleased with herself on my two subsequent visits I'm not scheduled to see her again until September by which time I'll have been off Pred two months if I stick to her withdrawal schedule. My GP is out of the loop.
From 20mg in Dec to 10mg in Jan then 1mg a month down to 4mg now has been a fantastic success in removing the pain. i'm fully mobile. I sleep better but shorter. On the recent bounce down to 4mg I did feel a twinge of the upper arm pain I used to have and at the cinema I did get the beginnings of a restless feeling in the legs that had become so uncomfortable when sitting or driving last year. So I don't know what caused my PMR if indeed it is PMR . My Consultant's working hypothesis is that 4-5 months pain free might allow my body to correct itself ?
You can reduce to a low dose very easily if the long term dose for YOUR PMR is a low dose. Most people do reach a low dose that they can't get below - that's the idea. Lucky people don't have PMR for long - but they are very much a minority.
is there any consensus on how low is low ? I'm a big unit at 100kg so maybe 4mg is low for me ? I'd certainly accept a degree of risk in exchange for not having PMR flare up again. At its worst I had to gather my strength to get up from a chair, going upstairs was a strenuous workout and going downstairs especially in the morning was a risk to life and limb.
Anything under 8mg is a physiological dose - the same sort of amount your body makes in the form of cortisol naturally - and regarded as low and acceptable for long term dosing. Weight isn't the usual baseline for dose in this case - it has always been related to skin area (don't ask me why) which doesn't vary as much between people as you might think, although now it is being accepted that some patients who are heavier MAY need a higher oral dose which does seem sensible.
Your consultant may have a theory that freedom from pain for a few months would allow a reset - I have had no PMR pain for far longer than that. Hasn't worked yet as far as I know!
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