Recenty diagnosed and taking 15 mg of Pred which although seemed to help slightly originally has levelled out . I’m 2 weeks in to a 3 week course before seeing GP again.
My question is this. As it is agony standing up from lying or sitting how to you get through the first 4or 5 hours after getting up without sitting down?
I walk around until I’ve done 10000 steps over about 8 hours and when it’s eased off a little am too exhausted to do anything.
I’d appreciate hearing your ways of coping.
Hello and welcome,
If you do have PMR, it may be that 15mg being the lower end of the starting dose range is insufficient for you. Is it working to some extent? When do you take it and when in the day does it seem to work? Some people take it in the early hours to make getting up in the mornings doable.
Can you say a bit about your symptoms in your bio like when, where exactly, what type of pain and what it does through the day? Also, any other symptoms of any sort. It really helps.
What do you do in your day? In the early stages when your inflammation is at its greatest you do need to rest. Pushing through it isn’t generally a good idea.
Thankyou.
My symptoms are classic. Pain and stiffness in neck shoulders and hips making most daily tasks agonising also pain during the night when moving.I take a painkiller at 4 am. So that I can at least get out of bed at 6 am then I shower to try to ease stiffness in joints difficulty drying of course. I take meds with breakfast at 7am as they have to be taken with food. It is now 8.40 am and I’m still in agony when moving.
If you're awake at 4am to take a pain killer, that's the time (or sooner) that many people take their prednisolone, so it has a chance to be working by the time you get up. Some people take it with a square of cheese or a spoon of Greek yoghurt at that time. The cytokines that cause the inflammation are shed around 4am, so taking the pred early means it is in your system to do its work asap. Once you get the dose and the timing right, you should get relief from the pain.
Others have reassured you it is early days yet and not everyone gets instant relief with pred - I think it took me 2 weeks. However, I agree that 10k steps is way too many - no wonder you're "exhausted"!
"This too shall pass" is often quoted on here. 💐
Thankyou for the advice. I’m glad I asked on here. I feel much better about everything now. Until tomorrow morning ……………
I would think 10 in am and 10 in pm would help you throughout day and night. I started with 40 so 20 is not too bad. I did feel relief almost instantly. Good luck. Hang in there - it will get better!
Hi Scalloplover , I have had a very similar experience . When initially diagnosed I was taking my 15 mg at 7am and for me I was not able to have any relief until almost lunchtime . I then changed my regime to 5 mg just after midnight with a little yoghurt or a half a biscuit , the remainder of my dose at about 6am ish . with paracetamol if needed during the day . This is when I saw a big change in my mobility levels in the morning . Three months down the line and as long as I take my pred at the times which works for me, I feel good , as good as we can be with PMR . I now feel as if I’m managing my PMR and it’s not managing me . And with the help and support of this lovely group of people you’ll get there too .
Hello, Scalloplover. It’s a good thing that you’ve asked your questions here. Firstly, you are exacerbating inflammation in your already sore muscles by forcing yourself to walk all those steps. Exercise should be introduced at very low levels at this stage of your ‘journey’ and 10,000 steps is unthinkable: I’m not surprised that you are exhausted and pain-ridden.
Secondly, if your daily dose of prednisolone is sufficient you should be virtually pain free in around 30-60 minutes after that morning dose. It’s difficult to know if the 15mg daily is enough for you or if over-exercising isn’t allowing the steroids to do their job.
I doubt very much that anyone on this forum would say that they were able to manage 4 or 5 hours standing after painfully struggling to get out of bed. You are asking too much of yourself. I were you I wouldn’t be waiting another week to consult with my GP: your physical state should be improving and not deteriorating to the extent you describe.
I apologise if I sound bullish but I feel that that every aspect of your current ‘regime’ should be looked at and revised. The following link may be helpful and you will see that exercise is increased in increments remembering that you should only embark on the next stage when you are comfortable with the previous one:
pmrgca.org.uk/wp-content/up...
This reply is hurried - have to go out now. Please come back to this page for ‘experts’ support.
Edit: Have just seen Snazzy’s reply which has a less aggressive tone than mine 🥴.
Thankyou.
The trouble is it is so agonising to sit and stand I don’t want to do it. I am at the moment sitting on a heat pad to see if that helps when I get up.
I do understand that but have to point out that you shouldn’t be in that much pain if you are on the correct dose of prednisolone. Before I was diagnosed my husband had to lower me on to a chair and haul me out of it and my pain was bordering on agony. On the day following my first dose of 15mg pred I was able to do those things unaided but slowly; I was still stiff with some pain but this improved massively as time went by. The first walk I took was five minutes long - two minutes to the post box and three back. I considered this an achievement and gradually lengthened the distance. It’s a question of very carefully pacing oneself and cannot be rushed.
You WILL improve but I truly believe that what you should do now is ask your GP to put you on a higher dose of pred: you may need 20mg to hit the inflammation in your body on the head. Please let us know how you get on and don’t suffer in silence. We have all been there and it can all be very overwhelming at the start. 💐
Thankyou.
Sounds familiar the only difference being I live on my own so have had no one to help.
I can see where I’ve gone wrong , not only continuing my 10000 steps but doing all the chores too with not enough rest.
I have seen the error of my ways. Thankyou for the advice.
I’m so sorry that you’re having to cope on your own. I hope that we hear better news from you very soon. There is always some here if you need to vent your frustrations. Very best wishes.
Ooh my goodness, that would do it. Chores need to be seriously priortised, standards bedamned. You do need to speak to the doctor if a couple of days rest don’t help. The degree of your pain suggests to me that your activity isn’t the whole story but part of it.
Hi Scalloplover. Welcome to this group, where you’ll find the most supportive and knowledgeable people.
I repeat what others have said, it sounds like you’re on an insufficient dose of Pred atm. Just remember it’s your body and if you’re feeling so wretched then don’t wait for the next appointment with your GP, ask for it to be brought forward - or even just a phone call.
It must be hard living on your own but there is always someone around on here.
PS: 10k steps is way too much atm. You’re struggling as it is without pushing yourself to those limits.
Good luck and stay in touch
I have had PMR for a long time and am really well managed - but I too live alone and that means there are things I DON'T do because I CAN'T without ending up in a right state. I have a cleaner for 1 hour a week - to vacuum and do one other job I can't like changing bedlinen, cleaning the kitchen area, the bathroom and so on. All I need to do to be in agony is use the vacuum for 10 mins. So I don't. Dust is very patient, it will always wait!
And while I walk every day, weather permitting, I know if I have gone over 5000 steps! I haven't done 10, 000 in YEARS! Weather also has a great effect on my PMR.
But managing PMR is not just about pred - it is about lifestyle adjustments and accepting that you have to make a lot of changes and possibly lower expectations. I never liked housework so it is a good excuse to just do what I can!
Hi and welcome
Agree with others -you are in very early stages -and your PMR isn’t under control . Whether that’s because the dose of Pred isn’t enough or you are trying to beat it into submission isn’t clear -a bit of both I suspect
Gentle exercise is good, but you also need a lot of rest.. and then more rest. Pred doesn’t cure the PMR, you need to learn to manage it - and walking 10000 steps isn’t managing it - certainly not at outset.
Have a look at this - healthunlocked.com/pmrgcauk...
Hi
Are you all saying that the pain and stiffness in the morning will always be a problem ?
No I’m not… but many find the first few hours after you wake and before the Pred takes effect is problematic - as explained in my link… re the substances [cytokines] which are released at 4am and cause the inflammation/pain.
The problem is early days the Pred is fighting on 2 fronts -
a. trying to get the built up inflammation [accumlated before diagnosis] controlled, and b. fighting the daily shed of cytokines. So has to work doubly hard. It’s like mopping up a bath or sink that’s overflowing and leaving the taps still running.
Once you have things under control, hopefully the dose of Pred will last 24 hours - so first thing in morning may be okay. But it may not..you’ll have to wait and see. You may require a slightly higher dose or may need to divide your dose to last the full 24 hours but that for later.
For now, you need to give your current dose a chance to do its work - and that’s by resting your body as it needs.
Thankyou. I’ll plod on and try to rest for the first few hours .
Plod is the operative word. But it should get better as things are managed better with a high enough dose and enough rest. The first weeks can be mighty trying for people!
Yes please do…I appreciate it’s difficult early days, but many have been through similar. As I said once you get things under some sort of control, it will improve. And patience is required - in buckets 🤣😂
I love your analogy of mopping the floor whilst the taps are still running, you hit the nail on the head but so elegantly put. It is a reminder to us all and many of us on here still push the boundaries. Thank you.xx
Variation on a theme - PMRpro refers to overflowing bucket in similar circumstances.
Whatever gets the message across..😊
Just to add that I was in the kind of pain described by you and others prior to diagnosis.
In my case my GP knew all about pmr as her mother had it. I was initially prescribed 20 mg pred, and after three days 30mg. This was higher than usual, but was needed to clear out the accumulated inflammation.
I stayed on 30mg for three weeks before reducing. It wasn’t an instant pain free experience, but I did get there in the end.
My advice, apart from anything else, is that you need patience, more patience and more patience still with pmr. Not good news, I’m sure, but most on this Forum would endorse these thoughts. You also need to give yourself plenty of tlc - I learned that the hard way!
Good luck, and do continue to keep in touch with this Forum. It’s good!
Hello there, welcome to the community. I'm fairly new, started on the prednisolone, immediate response, decided to just carry on as normal, mowed the lawn and went backwards! So I have also learned not to push my body, 10,000 steps is going to hurt. They know what they are talking about on here, take it easy, hope you get the right amount of pred asap and feel much much better. Sending good wishes, keep us updated.
as others have said...it doesn't sound like ou are on enough pred ...generall if a pain killer works then that particular pain is not PMR. PMR is only zapped by enough pred. Taking the pred close to 2 a.m. is much better than taking it in the morning...after all the inflammation ahs been triggered.
Exercise??? We are all individual but everyone has had to reduce dramatically ....gently gently. Some of us formally fit people are in a very different state...but try to keep moving...pottering around your home...short walks...it is difficult because the negative effects of too much don't hit straight away.
Agree you are doing too much - you need to pace yourself and take some rests - may need more pred
Hello,
I was diagnosed with PMR in April of this year. I suffered with very similar symptoms to you. My GP put me on 15mg Prednisolone and although the initial improvement was dramatic, after 3 days I felt the symptoms coming back. My GP increased the dose to 20mg. That did the trick. As a Newby myself I would say go slow and steady. I am now on 12.5mg but intend on staying on this level for some time.
Thankyou. All this information is certainly making me feel better
Hi Scalloplover,So sorry to hear you are in so much pain.
All the expert advice already given on here is coming from a place of support and experience so definitely worth listening to.
I was started on 15mg which wasn't enough. Then GP did agree to increase to 20mg and that was enough and I was pain free. So there is hope.
My advice on how I coped with the mornings until I was on the correct dose: When you can no longer cope with the pain and stiffness get up (could be 4am, could be 5.30am or 6am). Do everything really slowly but only do what you absolutely need to (e.g. go to the toilet, go downstairs, eat something so you can take your Prednisolone). Then I used to sit on a bit cushion on the sofa reclined with legs up and literally "wait the morning out" since then the stiffness/pain had subsided a bit then I could move a little more easily.
Good luck 🍀 and if when you are doing less you are still in so much pain - go back to the GP and ask for higher dose.
Thankyou. All good advice .
I would estimate that either 15mgs is not sufficient to get on top of your inflammation or that another diagnosis should be considered. I responded slowly and less than expected to the initial 15mgs, and had additional symptoms. I was later diagnosed with Eosinophilic fasciitis by a very supportive Rheumatologist. Good luck!
Hello and welcome, you have had a lot of excellent advice from everybody about dealing with these early days. It seems you have certainly been challenging yourself at a time when your body cannot cope with the inflammation that has built up before diagnosis.
It soon became a habit to take my pred dose as soon as I woke up and to return to bed with a cup of tea and to read this forum while they dealt with the morning pain and stiffness. I also found a hot bath to be very beneficial although getting in and out was extremely difficult and hazardous.
I read on here about splitting the dose and taking 1/3 rd at bedtime and the rest in the morning and that gave me back my morning mobility. I would suggest it is too soon in your PMR experience to introduce that regime but worth considering and discussing with your GP. But mostly I recommend you ditch the steps and get back in bed with a cup of tea, you need to look after yourself, especially as, like me, you live alone. Best wishes x
This forum is a mine of helpful advice ...always someone on hand to offer advice . I was diagnosed March 2022 and the first thing I had to learn was the art of doing nothing. As a very busy music teacher this did not come easy to me . After being signed off from work , I spent several months doing nothing but jigsaws whilst listening to the radio . And lots of afternoon naps ! Housework took a back seat and decent ready meals meant I didn't cook much . Resting is really key , your exercise can wait xxxx
Hi, welcome to the forum. This forum has been a lifesaver for me over the past 4 years since I was first diagnosed with PMR. We all want to be pain free and have our previous lives back but pushing too hard will only make things worse for you. Take it slowly and look after yourself, Tiggy 🌸
Why not give yr dr a ring asap, discuss the possibility of increasing the Pred, and then follow up on that when you see them next week. Suspect everyone would heave a sigh of relief if you so did...........
Hi
I rang GP was told it would be reviewed next week. Presumably with results of blood tests.
So will have to plod on
Good that you have made contact ,hopefully gives them an idea of the ammount of discomfort you have. Did they not alude to your blood results? That sort of boring into you pain is horrid, I had the same when I had an awful flare due to Covid. I couldn't get comfortable no matter what I did. Took 4 weeks and an extra 10 mgs of Pred to get it under control. Heat pads did help but I suspect it was more a distraction than anything else. 🌹
Scalloplover is still going through the diagnosis stage, so her GP probably wants to know the results of that before any decision is made on upping steroids or if it's another diagnosis. As we have explained, poor reaction to Pred is probably due to too high a level of activity as much as too low a dose of Pred.
You need to back off the exercise and give your body time to mend. If you have enough pills, increase your dose to 20mg for the remaining week of the trial on steroids, and rest. If the reduction in symptoms still falls well short of what's manageable, it would seem unlikely you have PMR. If your improvement is minimal, that may rule out any autoimmune disorder. A strong, rapid response to steroids is a key part of the diagnostic process.
Hi scalloplover. I take my pred at 2AM with some yogurt. This has helped with the night sweats immensely and also some of the other side effects, i.e. getting up to the loo 3 or 4 times. I was taking it at bedtime and like clockwork the drenching sweats would start about 3 hours in. Also I started at 20 mg Pred and the relief was pretty much immediate. Like you, I could do nothing. 10000 steps? Could be part of your problem. Rest is key and acceptance that you are not the same person you were pre-PMR. It's a tough pill to swallow. Stay in touch with our tribe. Expert advice and unending support. You are not alone.
Something I forgot to say before is that the 10,000 steps is actually a meaningless target dreamt up by the marketing department for pedometers! 3,500 is about the level where there is a measurable health effect and the gain with more steps is minimal. Don't punish yourself if it makes you feel worse not better.
hi - im so sorry to hear this! Im 56 and was newly diagnosed - PMR - put in 15 mg and also tried to do too much ( still am i think) but not in your league! Go easy on yourself. This constant pain is sapping. Meds need sorting and regulating etc. there may even be other things going on at same time. Rest is important i found and trying to keep in good spirits and even higher dose of meds. Poor thing. I am seeing a consultant Rheumatologist for first time since symptoms ( 4 months ago) as steroids not fully helping. Dont be hard on yourself but DO keep on keeping on - let pain be your teacher. I recommend the Curable app. I dont use it all the time but now and agsin it helps
I had PMR for a while before it diagnosed. It was diagnosed by my osteopath. I was literally walking bowlegged when I was walking the dog and had a job bending over to do the regular Dog pick up when he went to the toilet. It took three weeks at a starting dosage of 15MG for me to get any relief. As time went on it got much better. Make sure the reduction isn’t too quick. Certainly didn’t walk the distance you do.
It’s been just over two years and I am now at 2MG. I’ve had a few flares with a visit to the hospital at Christmas. That was with a severe UTI infection that almost became a bad case of sepsis. Do rest when you are tired. Pushing through it doesn’t help. I have found taking paracetamol to be helpful as well. Again try and time it before you have to get up.
Oddly I tapered UP, because I was on my own and thought my symptoms were just sudden osteoarthritis. I tried 5mg every other day as it got worse and I had an 8 day solitary trip. My husband is an Internist and we always have steroids on hand for our terrible neck degeneration.Anyway, on my trip I increased to 10 and woke up unable to get out of bed. That's when I figured out it was PMR, and with hubby's validation I increased to 20 to get through the week. Great but I woke up at 1am in agony until I split it 10 at 4am 10 at 4pm. Still splitting at 3.5 mg 18 months later.
15 is not enough for many of us to quell the inflammation. 15-25 is considered a low dose. Don't let them suggest a fast taper!
Get on You Tube to listen to very good educational talks.
We may have this forever so the sooner you get relief and get on with your life, the better.
Newly diagnosed 
Newly diagnosed with GCA
Zero pred for 6 weeks now PMR returned or never went away
Newly diagnosed 
