Hi all, following my first post a couple of weeks ago I have some more questions I'm hoping some of you can help with. I'm on a dose of 20mg Pred per day but my progress has not been as good as my rheumatologist had hoped for. It's true that the pain I was getting in my legs and hands has mostly subsided (apart from the occasional flare up early in the morning when my Pred has worn off) but the stiffness is still there in my leg muscles. Last Tuesday I was given a steroid injection of 160mg meythlprednisoline which my rheumatologist should "reboot" my system and clear up any stiffness. He said it could take 48-72 hours to kick in. The injection was on Tuesday but I'm yet to see any benefits (ie. I'm still stiff and woke up in pain last night plus continue to have night sweats).
What I don't understand is that I seem to respond to the oral Pred (indeed when I woke up in pain last night I took 10mg of Pred and within 45 mins my pain had gone) but havent responded to the injection. Has anybody else experienced this?
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Underlee
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I've never had steroid injections for GCA, but I have had them prior to GCA for wrongly diagnosed frozen shoulder, and since diagnosis in my arthritic knee. Have to say, sometimes they seem to work better than others. My late husband used to have them in his knee, and it always seemed a bit hit and miss for him!
If your dose of 20mg doesn't last for 24 hours, then maybe it's not quite enough, we spoke before about size to dose ratio! You could also try splitting your dose, maybe 15mg in the morning, and 5mg at bedtime - that might get you through the night better. I know the recommended time is morning, but sometimes you have to tailor things to suit you, and as long as you take the correct dose within a 24hr period then I don't imagine there will be a problem. Or maybe the coated variety would suit you better, I think they take longer to get through the system but of course they are more expensive so aren't the 1st choice of the NHS!
Nights sweats are a side effect of both PMR GCA and Pred, so a lose, lose situation I'm afraid! Having said that, hope you soon see some improvement all round.
Good. I firmly believe if you can get a good nights sleep, then you can face the day. If I don't sleep I'm like a grizzly bear disturbed from its hibernation - not a pleasant thought I'm sure most will agree🙈
I suspect that, like a lot of doctors, your rheumatologist is in cloud cuckoo land about the effect of pred in PMR! They seem to think that once you are on pred you are totally back to normal and can go back to work and do your normal workload - NO YOU CAN'T! Or the person who can is very unusual.
I had a dramatic response to the first 15mg of pred - within 6 hours I could move freely for the first time in 5 years. Instead of stomping down one stair at a time like a toddler and crawling back up on hands and knees, I walked down and back up almost normally, carrying a cup of tea, instead of placing it on the highest stair I could reach and struggling up to join it. Obviously, before that I had not been doing a lot, I couldn't walk more than a short distance and suddenly I was able to do more. We were in the USA at a meeting and working - and while I could do MORE I was by no means "back to normal" and by early evening I was exhausted and very stiff.
But the pred only relieves the inflammation - it doesn't alter the underlying autoimmune disorder that causes it and exactly what it is doing to the muscles isn't clear. What is still there though is that the muscles remain intolerant of acute exercise - and if you have then started to walk more, climb stairs and so on, then those leg muscles are going to remain in the post exercise state and be stiff. You wouldn't have gone and run a 5km race without expecting some stiffness - and climbing the stairs is in much the same league to PMR-affected muscles. It's something that is warned about in the forums over and over again. It was a good 6 months before I realised the other stiffness, the hip pain, the legs that didn't want to do what I wanted them to do, had also faded. But it had been very very gradual and I hadn't been able to reduce the dose easily at all, certainly not below 10mg. I know a couple of ladies whose stiff legs never went altogether while on pred, the hip stiffness persisted.
As DL says, maybe 20mg isn't quite enough, maybe you are a "not 24 hour effect" person and splitting the dose might help as we've said - or maybe you are just trying to do too much too soon. It is all to easy to do.
Injections? Not sure - I assume you mean an intramuscular injection? That should be absorbed better than oral pred and it is possible that the 10mg that made the difference was coincidence. It takes more than an hour for pred to get from stomach to its peak in blood. On the other hand, if it was an injection into the joint they are very hit and miss. A quick trawl around tinterwebs came up with a few people who found injections hadn't worked for them or they took a week or so to have an effect - no idea why that should be though. As you said, the i.m. injections will be methyl prednisolone and I can say from personal experience that oral methyl pred really did not do much for me at all - other than let in a major flare over a period of a few months! I had an immediate miracle with 15mg prednisone - go figure.
And yes - night sweats remain par for the course I'm afraid. If it isn't one thing it'll be the other...
Hi PMRpro, thanks as always for the advice. The injection was intramuscular (160mg into my rear so a decent size shot) so I'm surprised that I haven't responded to it as I had it on Tuesday. The 10mg oral Pred worked for me this morning within 45 mins of taking it at 3am so I'm confused why the injection has not worked (yet).
Hi all, I wanted to bring up the topic of chronic fatigue and weight gain which I read a lot about with PMR. Does the fatigue make you feel that you want to sleep or the time or is it more a tiredness that is always there? I don't feel fatigued at all, but when I have to get up to walk about, the stiffness makes me tired quickly and I look forward to sitting down a.s.a.p. Should I view this as chronic fatigue?
I had PMR and was on intramuscular jabs of 120mg to start off with every week and then the Rheumy spread them out more over time (about two years to come off completely, with the help of Methotrexate). They were great - very few of the side effects that seem normal with pills - though my bones did suffer. I also stopped having the really bad night sweats once on the drug. I have to say that I still had pain and stiffness and had to grit my teeth through trying to keep mobile, but the pain was more controlled if I did things in moderation. Under the advice from my GP I did also take a combination of paracetamol and Co-Codomol occasionally when things got too painful and found that this helped. As PMRPro says, the drugs don't cure the underlying condition.
I, too, am puzzled by how the jabs work on some and not on others. I'm also so sad that the jabs don't work on everyone, as they had such a good effect on me, for which I'm so, so grateful. There doesn't seem to be anyone who can tell us why. Perhaps nobody has done research on this yet?
I do hope you find an answer that helps Underlee......
Thanks Green_girl, yes it's frustrating that the jab doesn't seem to have done a lot for me. Paracetamol does seem to help me too so I have started taking this regularly. Unfortunately I'm still getting the night sweats and waking up at 4am in pain every morning so I'll be speaking to my rheumatologist about upping my current dosage of 20mg to see if that helps. Fingers crossed. Thanks for your comments.
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