I really don’t know how I’m meant to feel or if the level of aches & pain I’m experiencing is ‘normal’ or as expected - can anyone tell me how they feel and deal with this ?
I’m struggling in the mornings with stiff legs, lower back pain getting out of bed. Then my shoulders, neck and clavicle are very tender. I also have a sharp pain at the top of my left arm/shoulder. I struggle when getting dressed or trying to lift arms above my head
The leg pains lessen after approx 2hours of taking my 10mg Prednisolone but the shoulder & neck pain continue thru out the day
I’ve been on Prednisolone for 16months & have only reduced to 10mg from 15mg which is viewed as very slow by my doctor, who is pushing for me to reduce to 9mg but with these current levels of pain & discomfort I’m really reluctant to do- am I wrong?
I do take some small relief in Paracetamol & and my husband now believes my favourite perfume is Deep Heat or Radian B - as that is all he can smell on me apparently 😁
Any advice or suggestions would be appreciated
Thank you and here’s to a hopeful & safe New Year for you all
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Stiffknees
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The experts will be on- sounds like too much pain to me: putting my bra on is excruciating but I don’t have much pain after that ( 5 1/2 mg after DSNS reducing ) . Good luck. Jill
Your GP needs to treat the patient and their symptoms and not an imagined text book. If what you have is PMR then you should feel considerably better than that providing you are on the right dose of pred which I'd say you aren't - and probably haven't been for a while, if at all.
When you started on pred you should have experienced at least a 70% improvement overall quite quickly - if you didn't then your GP should have tried 20mg, even 25mg. It is possible that some of the pain is due to myofascial pain syndrome - often found alongside PMR but better managed in a targeted manner. And with time things SHOULD have improved.
That is is worse in the mornings is normal - the inflammatory substances are shed in the body at about 4am. The longer you wait after that to take the pred, the more inflammation has been created and the more the pred must do. The optimum time to take plain white pred is about 2am - then it is there, ready and waiting for the inflammation and it never gets hold. RElief happens sooner and possibly even less pred is needed. If you can't face waking at 2am, then waking early and taking the pred and settling down for another couple of hours should avoid a lot of the agony. Some people find taking the pred before bed helps and is less disturbing.
But no - if the pain isn't under control your GP should do one of two things: he should RAISE the dose again to see if that helps and accept you need more for longer than some others. It took me over 4 years to get reliably below 10mg. Or he should refer you to a rheumy to be sure this IS PMR and how best to manage it. Some of us need more - the bioavailability of pred (how much you absorb of the oral dose is between 50 and 90%. Obviously a 50% person will appear to need a lot more than a 90% person.
Tell us about your first experiences of PMR without and with the pred. How marked was the improvement?
Appreciate your response-my initial symptoms included limited mobility & stiffness. Difficulty in getting up from a seated position & even trying to lift my legs above the shower tray to get in & hoping I didn’t drop the soap as no way would I be able to bend to retrieve it!After a mis diagnosis of sciatica, requesting another doctor & several blood tests later - PMR was diagnosed & after 2-3 days on 15mg I felt a great weight had been lifted & I could get back to some normality & more active life
Maybe the dose should have been higher to start with but you put ones trust in the professionals at the time
I fear you’ve been mid-sold PMR which is not a condition that obediently goes in two years. You are only 16 months in and doing nothing wrong. It takes much longer than that for most
With PMR pain = inflammation and no amount of ‘manning up’ gets away from that fact. Your pain getting better after Pred speaks volumes. What does your doctor say when you tell them you are so incapacitated and that eau de Radian B is a permanently used perfume?
Thank you the link - which I will read soonI actually wanted feedback from this forum before contacting my doctor again - needed to feel in control & more informed, which I always do after reading posts
You poor thing. Your symptoms sound very much like mine before I was diagnosed. I could hardly get out of bed. I was in excruciating agony. When I started pred it was like a miracle after less than 24 hours, I was actually back in the land of the living. It does sound very much that 10mg of pred is not enough. When you first had pred did things improve dramatically?
It sounds like PMR in that case. You really should go up a bit to knock the PMR on the head. Some people do have more trouble reducing than others in spite of what doctors think about it.
Nobody on here would ever call you a wimp. It really sounds like you need more Prednisalone to obtain optimum relief. Like you say, You do need to taper quite slowly using a method like the ones described on the right hand side of your screen.This is not a quick disease. Mine lasted 4 + years and then morphed into GCA. I would be inclined to return to the last dose you were comfortable at and stay there until your symptoms settle. Then taper, very slowly, never more than 10% of your dose. Also encourage your doctor to explore the possibility of other conditions, just in case this is impeding your progress. Wishing you a happy healthy 2021.
Hi. I can only agree with all that has been said above. I am now only into 8 weeks of being diagnosed but was put on 20 mgs preds immediately. My severe pain went in about 20 hours and then the Dr took me down to 15 mgs too quickly. It came back so then I did 19mg for 1 month as advised by the forum and the Dr which was great but now the Dr has put me on 17.5mg. I am now back to taking it at 6pm after my main meal and finding it settling down now after 5 days of bad heads - shaking - and very giddy. Yesterday it seemed to settle for the first time. Hoping you can get the right dose sorted for you. Yes, old age has a lot to answer for but you have to get this illness sorted to get on with it. Good luck and a healthier new year.
I am now taking my 15mg of pred at 6.30am and 2mg at 6.30 - 7pm. This is much better to manage the pains during the day and night and is much better than taking one dosage at 1pm where I was in pain for most of the day !
Reducing is another matter but sounds like patience is the key.
Your symptoms sound like mine when I had a massive flair after reducing too fast down to 3mg. The doctor had to keep increasing until 30mg eventually got it under control. Now reducing hyper slowly. Hope you get some relief soon - sounds like you need your dose increased a lot.
Hi there Stiffknees. I started with 20 mg Of prednisone daily August 2017 and got great relief very quickly and graduated down and eventually on my own stopped taking prednisone after 22 months due to the side effects of mainly fatigue and redoubled my efforts on exercise, diet, supplements, meditation. I have just joined this forum 231220 and I am preparing my story to post shortly. While I am not cured I am making steady if slow progress and I wish you the very best in your efforts to get well.
I try keeping to a low carb and low sugar intake but possibly not strict enough with myself especially over Christmas but these symptoms have been happening for longer than just the holidays
Exercise - not enough but I do get out for a walk everyday for minimum of 30 minutes
I have put one and half stones while on steroids so keen to shed it. I eat small portions but my sweet tooth is letting me down. I get out breath walking now while I used to play 5 a side before PMR.
Little tip for the sweet tooth. I find having diluted lemon juice each day gradually changes my taste buds and renders sweet things horrible - outrageously, tooth, clenchingly sweet. I had forgotten this little gem from my youth. I used to have PLJ or similar, or squeeze your own. Strange and true.
It is very painful. Some people have more pain than others. Consult your doctor about moving to a split dose, say 3 at night 7 in the morning or whatever the doctor suggests". This helps with the morning pain"
Certainly not being a wimp. Nobody wants to feel disabled in their everyday lives. I’m sure if you could do it you would do it. As for the increase in Pred.
I too have all the pains that you speak of Especially the legs and shoulders. Every morning I think I will increase my Pred. tomorrow and then by the late afternoon I have changed my mind as I feel a great deal better and worry about osteoporosis.
I’m on 3.5mgs so on a low dose but whatever dose we’re on if it’s not keeping us pain free then something else needs to be done. Problem is what something?
Sorry I haven’t been able to help you in your request but hopefully to know others are suffering the same might help in some way.
I am so sorry that your pain will s bad. All I can say is that it’s yours, only you know how bad it is. My experience wit GP is that they have very little empathy and memorise book learning ad apply without question. Pain is horrible and destructive. I’ve been up and down on steroids for years now, initially following , to the letter, Drs orders. Sadly for me this didn’t work. Pred works. It may shorten my life but pai stopped me dong anything except essentials and where is the fun in that? I now keep as low a dos as allows me mostly gain free and the Doctor just fill prescriptions. Good luck, pain isn’t you being pathetic, it’s life inhibiting.
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