Dear People on this site, can you help. My day seems to go like this. I get up in the morning and am a bit stiff - going down the stairs is slow but as I get breakfast etc I loosen up. We have breakfast and I take my steroids when I eat. It usually takes about 20 minutes to tidy up and I now start to feel tired so I sometimes have a half an hour rest on the bed when I go back upstairs for my shower. My legs now start to feel really stiff and achey. The dog is expecting his walk so we stagger slowly around the field by now feeling pathetic and in pain - legs quite tight after walk. After a bit of computer work we have lunch (still in pain) and I sometimes have a rest for about 1/2 an hour post lunch. The leg pain starts to ease but doesn't really diminish to a point where I feel I can walk without a walking stick until 6pm. I often find I have more energy and ability to do things like bake etc later in the evening when I am nowhere near as stiff. Are you able to enlighten me as to why the pain seems worse after taking the pred (11.5 mg). I have tried taking 5mg during the night with balance at breakfast but that didn't seem to make any difference and made sleep even more broken than normal. I would like to understand the mechanism that causes my body to behave in this way. It is a struggle to reduce and at the moment I seem stuck at around this dose. I now have to carry an injection for adrenaline in case I forget to take my steroids or am ill and do not absorb them! Sorry for the moan.
Why do I have more pain in the morning after taki... - PMRGCAuk
Why do I have more pain in the morning after taking my steroids
To be honest - I would question whether you have PMR or even another inflammatory disorder at all.
msdmanuals.com/home/bone-jo...
says "Stiffness that gets worse as the day progresses is usually not caused by inflammation." and that would account for the poor response you are showing to pred. It will only work on inflammation that is causing a symptom.
Have you been diagnosed by a GP or a specialist rheumy?
I suppose you could try to take the total dose very early in the morning, but perhaps consider if it is PMR as PMRPro suggests. It can take a while to unstiffen after taking the pred as you absorb it.
Thank you, your thoughts are interesting. I definitely did have PMR at the beginning of my pred journey as the relief from pain was miraculous. However, I have noticed in the last 12 months that my joints have swollen more, especially my feet which have become a bit deformed. I am also awaiting a shoulder replacement as the arthritis is pretty bad and there is no cartilage. Does this mean I can speed up my steroid reduction. I have been awaiting an appointment with the rheumatologist (for months now) and I think I should be more proactive and get in touch with him, Thank you all again.
If you have swollen joints then that is really not typical of PMR. Whether it means you can speed up the pred reduction I really don't know - it is still possible it is hiding some of your symptoms. If there is a chance this is an inflammatory arthritis rather than PMR your GP may be able to speed up the appointment - PMR tends to be low on the list but inflammatory arthritides need management as quickly as possible to prevent further damage and you are already saying your feet are deformed. See your GP urgently and get them to expedite the referral if they can.
Thank you I will try - primary care here not working wonderfully. I did wonder if it was early onset rigor mortis. 😅
1. Maybe it has to do with something you're eating or drinking for breakfast or coming in contact with while out walking the dog; an allergy or sensitivity.2. Could be caused by another condition. I have Adrenal Insufficiency and can barely get up without taking my Hydrocortisone but even after taking it I have no energy. At night though, around 8 p.m. I get so much more energy and feel more alert. So I'm trying to get things done when everyone else is getting ready for bed. My Doctor said she doesn't think I can make enough cortisol to have a burst like that but something causes it. However, the length of time I stay that way has been diminishing lately.
Hi FF. That is just how I feel. Good for cooking the dinner tho. I sometimes do the ironing late but some days I am just too tired for anything much. I am going to email my Rheumatologist as I do think I also have some form of arthritis too abd probably need to treat that. It is annoying to retire imagining you now have time to visit children and go places but then find you just don't have the energy. Thank you for replying I really appreciate your support.
hi Rachel
I’m another one that tends to have this kind of pattern ( hence I’m writing this at 1am!)
Like you I definitely had PMR (and GCA) at onset in 2021 but I feel (hope) that these conditions are now less active. I too have swollen and stiff joints, and deformed feet that make it difficult to walk. The rheumy is convinced that my main condition is now osteoarthritis, although I still have some PMR too. Also struggling with adrenals so he’s told me not to reduce to below 5mg pred until I have advice from an endocrinologist.
Meanwhile I stagger on through the day much as you do, and have most energy in the early evening…..like you it lasts less long now, maybe an hour…
So I’d say yes, do get a medical opinion, and of course be aware that like me, you may have both arthritis and PMR.
All the best and I hope you get some answers soon 🙂
Thank you. It is all very testing isn't it. I used to have so much energy. My partner is great tho and, unless family come to stay "to help" we manage. We just have to pace ourselves. X
I have PMR and end stage OA in both knees with severe knee pain. However, I take my full dose of pred as late at night as I possibly can, or early hours, with a large glass of water. I have the gastro resistant tablets. I am very stiff and in pain first thing and often need a stick to get me out of bed but once I am up and about this eases up and I can have a reasonably normal day. I walk my dogs off lead and I use two walking poles which helps greatly. However, I try to elevate my legs in the evening to ease them. Maybe try the whole dose of pred as late as you can and see how that goes.
I did used to take mu Pred at 2am but found my sleep was very disturbed but I haven't tried before I go to bed. Interesting- I might give it a go. I am nervous as I have just got my sleep pattern back but will look at this if I start doing my ironing at 2.00 am again.
Worth a try. Good Luck
Thank you dear. Some days it gets a bit overwhelming. My mother had terrible arthritis and I realise I was not as sympathetic as I should have been - now I begin to understand how awful it was. X
I take my Pred at 11pm in empty capsules bought from Amazon size 00 with my my Famotodine also fits in as well, makes life a lot easier.x
Thank you very helpful. x
Maybe try taking your pred an hour before you actually get out of bed. And also you could split your dose? So 6.5 in the morning and 5 at 2pm.
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