I have been wanting to ask this particular question for well over a year I suppose, and I'm not quite sure why I haven't, but the post that I read this morning from waltztherapy has prompted me to approach the topic.
What do people consider manageable pain? Are people 100% pain-free? I don't think I've been 100% pain-free since I was on a much higher dose of prednisone. Maybe ever. I don't remember at this point.
I've sort of settled myself into accepting that in the morning when I sit down on the sofa to drink a cup of coffee, it's going to be a bit sore as I sit - achey and uncomfortable in my legs, my upper arms can be a bit sore as well.
The pain isn't with me all day, though it is when I stand again, and if I'm sitting at work for a while when I stand up it's painful. Not horrible, not unbearable by any stretch but definitely uncomfortable enough for me to let an old man groan slip, lol.
That goes away fairly quickly while on my feet. In and out of my car is a hey as well. At any rate, I sort of assumed that's just what I was gonna be living with unless and until I go into remission.
Are you folks completely pain-free as if you have no PMR at all? I'm currently at 5mg having started at 40 in the fall of 2022.
I DO want off the Pred if manageable - weight and mood are occasional struggles (though I've lost 50 pounds in the last year after gaining about 40 upon first starting Pred). A combination of PMR and a bad knee make exercise not too of my list right now. Also I live in south Florida for the next 2 years and it's HOT. And I just don't like being dependent on anything - though I accept that I need to do what I need to to take care of myself and am SO grateful the Pred works.
One other aside (and I know I'm a lot) my rheumatologist wants me to look at Actemra and that stuff scares me. Feels like reprogramming my system and as someone who has had some experience with code, it rarely goes as smoothly as people want you to thing and it feels like a permanent commitment.
Sorry - got off topic there. So... the pain thing?
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I had GCA not PMR and can say once on Pred I was pain free all the way through after the first couple of weeks.
However, I think it’s more difficult with PMR to achieve 100% - some do, but many don’t- but still good enough to have a good quality of life. However if aren’t sure you were completely pain free at 40 mg [which is a high dose for PMR alone] then I would question if that’s all you do have.
But as you are less than 2 years in, and although you say a bad knee has hampered exercise are you sure you have been pacing yourself as we always say is paramount.
Why is your Rheumy suggesting Actemra? Is it because you don’t have 100% relief… certainly shouldn’t be because you aren’t reducing quickly enough you as are on 5mg in less than 2 years. Personal opinion is why add in another drug with its own set of side effects when so low.
Others will be along shortly to give their experiences.
Thanks for that - good to know (but not good to know, if you follow) that 100% is rare - I thought maybe I wasn't paying enough attention and rushing the taper. As I recall, I was pretty fine at 40mg, but honestly I was almost completely disabled before my diagnosis and so the line between 100% pain-free and 90% pain free would have, at that point, been irrelevant to me in a lot of ways. I was just relieved to not have to ask my son to move in to care for me.
As for Actemra - my rheumatologist says she simply wants me off Pred (though being in the US, and myself being a cynic, I don't rule out some sort of kickback) - but I've got none of the bloodwork issues associated with Pred and I have my weight under control again, so I'm not really interested. Also found out during colonoscopy that I have diverticulosis - not itis which is active, but osis which means there are diverticula present - so in my mind it's a no-go anyway.
I think that’s a difficult one to answer as pain is such an individual matter, and means different things to different people.
For me, I never reduced pred unless I was symptom free, and that meant staying on the same dose for as long as it took - 7/8/9 weeks, and sometimes longer.
I have now been off pred for nearly two years, but can sometimes feel the occasional twinge in my upper arm(s). However, I have concluded this is just muscle soreness from old age probably.
I feel one of the issues with staying with a bit of pain is that the pmr could be building up again, and that can lead to a different set of problems - not least because you are still in relatively early days with pmr.
That's wonderful that you've been totally pain-free! The bit at the end, wondering if it's old age - that's a real battle with this thing. I have some other issues that I've wondered if they are related to the PMR or just old age.
I have some issues with my wrist that is exacerbated as I taper, but I'm assuming as it's not bi-lateral that it's just arthritis or something that's getting some relief from the Pred that I'm taking for the PMR. SO fun to find new things as I taper, lol.
I have some pain but mainly some stiffness when getting out of the car on a long journey or getting out of the chair if I have sat too long. Also a bit of muscle ache when going up a few flights of stairs or up a hill. Generally I would say I can manage to have a good quality of life
I have been pretty much, pain free, from PMR at any rate from around a week or two of starting Pred. Having been pushed/carried into A&E in total agony from virtually every joint in my body, and hardly able to move, I was mobile within a week and back to walking the dogs, very gently, within a month. I have been one of the lucky ones and been able to lead a relatively normal life for the majority of the time. Mind you I did start this during Covid so the definition of "normal" is a tad skewed. I found this forum very early on, had an excellent surgery/doctors and never been under any pressure to get off Pred ASAP which has also helped me to miss many of the problems others have had to experience.
Hi. I’m similar to koalajane - especially after long drives.
I would say though that if you’re achy and uncomfortable every single morning and it lifts during the day that that sounds like classic active PMR and if it were me, I would experiment with going to eg 7mg for eg 10-14 days to see if it mops up any lower level inflammation and if it helps consider going to eg 6 mg then.
I was surprised recently how going to just 4mg for a month helped me when 2.5mg taper went too low - so small margins with Pred can really help - the black art of tapers!
It's all very complex isn't it? If you define stiffness as pain then, no I am never pain free but that awful aching you get in the hips/legs/arms is definitely gone unless or until I flare again. I am sitting on 4 and a half mgs after 7 years. I'm just getting over a bout of shingles atm so I'm not trying to taper until this is over. As others and you have said, it's hard to know what are just age related aches and pains. A lot could have happened in the past 7 years that I can't blame on PMR...
I find it difficult to separate the pain and stiffness from the overall feeling of malaise and fatigue that I get from the PMR. At 66, I would expect some stiffness and discomfort as part of getting older and I tend to think of it more in terms of what I can't do without the relief I get from pred. I got down to 3 mg and I became absolutely crippled by the PMR and I was getting worse, that is definitely not acceptable in my book. So I am back on 6 mg for the next couple of months at the very least. I can gauge how well I am doing by the things that I find myself reluctant to do. When I am reluctant to leave the house to do something I enjoy, I know that I am not well. Likewise, if I find that I am not washed and dressed and had breakfast by lunch time, or if there is a big heap of unwashed dishes in the kitchen, I know that I am not managing. Though, regardless of how much pred I take, I can't quite seem to find sufficient enthusiasm for hoovering. Overall, so long as I can do the basics of looking after myself at home, attend medical appointments, do the grocery shop, go to live music gigs, a spot of light gardening, go for a swim etc, I feel that I am probably doing OK. However, after almost 18 months on pred, I have more or less come to terms with the thought that I will no longer be walking the hills as I did before all this started.
I have never been pain free. I wake up stiff and with varying degrees of soreness depending on where I am in my tapering. If this goes after a few hours after taking Pred I’m happy. If I’m on the edge of my what’s okay dose or have overdone it during the day I have an uncomfortable evening. The only time I have leapt out of bed recently (like the old days) was when I had a mild dose of Covid and it gave my immune system something else to think about. Otherwise my early mornings are a reminder I’m still have PMR and it’s still active. I did read an interesting article about research in Bristol where patients with PMR intermixed pain and stiffness. To that particular cohort pain and stiffness were one and the same.
A difficult one that! When I first took Pred all the pain and stiffness fizzled away half an hour later. It was miraculous. Now starting my 5th year there have been interventions such as injuries and flares! So difficult to know what is what. Rheumy says in spite of my age I shouldn’t feel any stiffness if PMRGCA is under control. Sort of helpful. Good luck.
It was difficult to tell whether the pain was arthritic or PMR! Except that the chronic PMR pelvic and shoulder pain was more or less gone. I had a new hip while on 20 pred. I too was offered Actemra on a slip of paper by the Rheumy. Tried the pharmacy and got blank looks then one of them suggested it was Actimel. (A UK yogurt type drink!). I looked actemra up and decided to keep with pred. My brother has tried Mxt and actemra and I'd now back on pred, his journey is so far a little longer than mine and we both have GCA as well as PMR. Good luck but don't be in too much of a rush. Flairs can be quite unpleasant.
I am free of the original debilitating arm pain when I could not lift them, but still feel aches & discomfort in shoulders occasionally which I am able to ignore. I have recently had a really bad hip that I thought was sciatica & the doctor says is an arthritic hip ( I have had a replacement on other side 20+ yrs ago) but it could also be PMR. I am currently tapering from 15mg down now to 5mg. Very reluctant to up any dosage as I desperately want off pred & its side effects. Pain can be masked by pred or caused by it, very difficult to diagnose.
I have been on Prednisolone for 5 years . I have managed to drop to 4 mg s on advice from Rheumatology department. But I have to say pain in the mornings bad .Neck ,arms , shoulders. By about 2 pm feel better .Continuing to do what they want as wish to come off steroids .Last year had bad leg injury lower leg which took 10 months to heal because of pred. I possibly will have surgery for other leg from 22 year old tumour which Is large ,coming out seeing surgeon next week. Dreading another long return to health with next wound .But I am putting up with discomfort from dropping to 4 mg. !
depends on the person, some people have stronger will to live and can endure pain longer. Not all the prisoners in the Hanoi Hilton broke at the same time. We have tens of thousands of deaths in the US from fentanyl. Most all are suicides.
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Overall, so long as I can do the basics of looking after myself at home, attend medical appointments, do the grocery shop, go to live music gigs, a spot of light gardening, go for a swim etc, I feel that I am probably doing OK. However, after almost 18 months on pred, I have more or less come to terms with the thought that I will no longer be walking the hills as I did before all this started.
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