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.
While most say that PMR is bi-lateral that is not true for me. My right side is usually where my pain is. I have had flares in my right hand & right hip that go away when I increase my prednisone for 5 days & then go back down to my original dose.
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.
I'm on 0.5mg and diagnosed June 2020, although with hindsight I suspect I had PMR for many months before but had, like many put the aches and pains down to getting older and my OA which has been prevalent since the '80's
Thanks for the reply! Good job on getting down to that low a dose! The lowest dose I’ve managed in nearly two years is 4.5, but 2 major flares have necessitated my going back up and then beginning my slow taper again. Did you have any flares during your tapering? Also did you experience side effects from the prednisone ?
Hi, apologies for late reply. 4.5mg in two years is pretty good going, getting lower at this level often takes a lot longer than for the higher doses, so no rushing, possibly go for a longer taper and don't start the next one until you are completely happy about where you are. Sorry I digressed from the question. No I never really had a flare although I had a few times when I realised I had gone a little too low and increased accordingly before a flare had time to develop. I also went up from 5.0mg to 10.0mg to keep my CTS under control during Covid (see earlier posts and I probably need to update my profile again) which worked well. Also lucky in that I've never had any noticeable side effects from Pred so never been in a rush to get off it from that point of view.
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!
I think your suggestion is excellent and I appreciate hearing your experience. I actually bumped to 10 for two days and it does seem a bit better - though I'm honestly terrible at knowing how I feel (am I better? Worse? The same?) unless the difference is dramatic.
I was going to drop back to 5 this week but I'll try 7.5 for a couple of days then go back to 5. My regular doc doesn't want to write Pred unless I'm 5 or less daily - feels that over that I should be seeing my rheumatologist - those meetings are always the same though and just cost $$ so I'm hoping I can get and stay at 5. He's happy to write however many and any dosage that I want to manage my own taper, and I like that...
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.
Yes - finding the formula to be able to live your life while accepting the inevitable changes is the trick. I've accepted the changes and limitations and contour my life accordingly - and I'm grateful that I'm able to. It's just how MUCH change is acceptable. I tent to be quite hard on myself in that regard...
The "am u doing what I'd like to be doing" is a great check though - thanks for reminding me. I was starting to dread sitting down in the AM and wasn't looking forward to standing at work, so I think the suggestions of upping my dose for a bit are really on point.
As for vacuuming - I got a Dyson cordless and now don't mind at all, lol.
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.
Thank you for asking this question! I have thought about it often. I am 58 and have had PMR for 6 years. I only feel completely pain free when I am on a dose of 15mg or more of prednisolone (I am also on 20mg Leflunomide for the past 3 years). Once I am below 10mg pred, I have a bit of pain in one shoulder and some stiffness/aching in the hips. Both are tolerable and the hip aching is inconsistent, I go through periods where they're fine. I am still very active (similar to pre-PMR). Its very helpful to see so many are in a similar condition.
I’ve had PMR for nearly 7 years after being told it would ‘burn itself out’ in a year or so.
I’ve always had stiffness and pain. I’ve been on 5mg on years now and tried to reduce. (See later comment re knee replacement) however even using the very slow and recommended reduction plan, I get as far as 2mg and the stiffness and pain get so much worse. It is bearable but I find that it does drag me down, day after day and I avoid doing things which I know will hurt, which makes things worse as I get stiff from being inactive! Round and round we go.!
I’m a horse rider and skier so creaky knees are a given but I’ve just found out I need a knee replacement… after suffering NO PAIN due, my surgeon says, to my being on steroids which have masked it. So much so that I didn’t know it was so bad. Had I known, could have had minor surgery years ago instead of what I am now facing.
So…. Very fed up with PMR!
Pain is relative but I do sympathise as I feel it is also cumulative and it makes me miserable.
Hang on in there. I’m going to try reducing again … I’m not giving up. If I’m not able to get off these awful drugs, I will reduce them as much as I can.
I am going through the same thing! Diagnosed and started Prednisone August 2022. Pain free after first few doses @40 mg. Have made sure I am almost 100% pain free before each taper. Got to 2 mg and stayed there for 2 months then started darn slow taper to 1.5 mg (2 months to taper) then stayed at 1.5 mg for 3 months. I experienced the usual pain/stiffness symptoms as I tapered but this time, the symptoms didn't get better. Posted here and was advised to go back to 2 mg for a week to 10 days and bump up to 5 mg for a week to 10 days if needed. I am happy to report that going back to 2 mg has relieved most of the symptoms so I am staying at 2 mg for now - probably a few months - before I consider tapering back to 1.5 mg.
I too want to be off prednisone and am disappointed but happy to be at low dose and able to do everything I enjoy.
I was on pred for 8.5 years, ending at the beginning of February 2024, and for most of the time (after the first two years when my dose was higher) I was at or around 2 mg, frequently attempting tapers. This meant, and I think means for you, that 2 mg was my "lowest best dose". In other words, PMR was not yet in remission, but I only needed around 2 mg to control the symptoms. This was not entirely smooth. For a long time I was at 2.5. Another time I took a year to taper to zero, but had to go back on pred after six weeks. In 2021 I had a major flare, definitely increased disease activity. Then at some point I became able to taper again. (I have related this to having had the two-dose Shingrix shot, although this may be correlation, not causation, but it certainly did feel like it was easier to taper back from the flare to my usual low dose after the first of those shots.) Once again it took many months to get down to zero, and this time so far all has been okay. although I'm still not quite believing it!
What a great question, I was feeling to ask the same. It's like asking "What is Love?"
I thank PMR Pro & Dorset Lady in particular for the advice recently on handling tapering after a flare and this question relates to that.
I'm never sure as I've always seemed to have a high threshold for pain but I relate this PMR of mine more to stiffness. At its peak it was also mobility, couldn't pull my trousers on standing up as I couldn't raise my leg, couldn't reach the shampoo in the shower and raise one hand on its own to wash my hair or even squeeze the shampoo out of the plastic bottle. Along with other parts of the body. As the day wore on I'd cope better but over Xmas I couldn't even get of an armchair unaided. 15 mg got me moving quickly and I got quite fit, I thought, until my last flare, when down to 7mg had to follow the experienced advice on here.
I'm slowly tapering back from 8mg down to 7mg again and it's my wrists, fingers, and tips of the shoulders when I wake up that have stiffness. Is that ok after another month, to go down another 1mg? It's like feeling my way along a smoke filled room holding a rope. The only analogy I can think of that, relates back to my offshore fire fighting training.
I had a recent blood test and am waiting to talk to my GP this coming week.
I laid off the gym for a month while going through this last flare and am tempted to head back and just do cardio on treadmill, bike & Rower and lay off the push ups as that seems to get me in the wrists and shoulders.
On reading most of you others on here after 6 months and down to 7mg I'm feeling rather lucky. 75 next week and still trying to lose more weight but also find that difficult with Pred. Am sticking to as low on carbs as I can, and countering some of that with Gluten Free products. GP is trying always to get me on Metformin but I've been fighting that as see it as just another chemical to get off later.
Like I said, it's an eternal ask, stiffness or pain, "What is Love?" So long as I can move. I ignore the old rugby injuries that hurt in cold weather, the dodgy right knee that probably needs another cartilage clean-up, the stiff neck that cracks with crepitus, and put those down to age and a mis-spent youth.
I don't normally respond, just read these posts because i have few positive vibes to share. I am in Florida, diagnosed with PMR Feb of 2022. I have a bad knee. I am reading all the replies to your post because we sound very similar.
In the past year I have gotten very low on Methylprednisolone. Once to zero Mg per day. but it only lasted a few days. The whole journey was painful, but bearable with Advil in my mornings to help with morning "super stiffness". I'm back up to 6.5mg again and still in knee pain.
Thanks for the reply, and yes we ARE similar. Somehow I always forget to take Tylenol, too. A good reminder that OTC pain killers are a tool in the arsenal.
I get a prescription every couple of months for some low dose oxycodone for when my knee is particularly bad, but don't much like taking it. I do get steroid shots every three months and I'm interested in that treatment in which they spin the stem cells out of your blood and inject them into the knee, but I'm not a candidate while on prednisone unfortunately.
I would define manageable pain as something that is there, but does not distract me from living my life too much. What you seem to be experiencing now is how I was before the medication. So, I could have lived with the pain of PMR, but my body would have sustained the damage and my life would have been restricted, so I chose not to.
With Prednisolone, I was pain-free and able to look after myself and that included participating in life fully, exercising , cooking good food, travelling and working.
I have no experience with the medication you were offered personally. My PMR followed an easy evolution and, in any case, this medication is not offered routinely to PMR sufferers in the UK. My understanding is that it works quite well in approximately 50% of cases where staying on high doses of Pred seems too risky. A lot of people in the UK would have been thrilled to be offered Actemra, but I can understand your hesitation especially given that, while your taper may be slow, you are on 5 mg now, which is not so bad. However, given your symptoms, do you think your dose is adequate? Perhaps, this is what your doctor may be wondering as well.
Well I am increasing for a little bit to see if that provides more insight.
Before I got on prednisone I thought I was about to be completely disabled - it was an unbearable level of pain and I thought I was gonna have to ask my son to come take care of me so that I could go to the bathroom because I couldn't even stand up - so it's been a bit of a miracle drug for me.
I am pretty much pain free on 2mg, 5 yrs since diagnosis. I have bad days here and there where I get aches at night when the prednisone wears off. A handful of days a month, maybe? However I do have some stiffness in the morning that eases once my dose kicks in. And that definitely is better with movement and can also return in the evening .
I can deal with the stiffness with the pain controlled. I had been on 1.5 mg for a while but had many more days when that pain creeped back in the evenings so I went back to 2mg.
I can also have times when my hip locks up, not painful but annoying!
Everyone likely answers that question differently. Although we may suffer from the same condition (GCA/PMR), our bodies and responses to medication are different. Yes, there is common ground with disease symptoms and treatment, but reading members’ stories on here confirms that some sail through journey and others struggle with side effects, tapering and other health woes.
I too am on 5mg and thus far “manage” my PMR (with pred and methotrexate) to the degree where I can function comfortably with some physical activity limitations and stiffness. Splitting my pred dose early on has helped with morning stiffness.
If I get to the point where tapering causes a flare of symptoms, I stop tapering. This happened at 9mg for almost two years. I wasn’t willing to compromise my quality of life and suffer with my original symptoms. That’s when I decided to try MTX to get to a lower pred dose. Thus far it’s helped me slowly taper down with no side effects to speak of (other than being more susceptible to getting sick during winter cold/flu season before lowering the MTX dose).
I too have diverticulosis/itis and after discussion with my rheumy have decided biologics like Actemra or Sarilimab are not medications I would explore due to the GI risks (and neither are currently approved here in Canada for PMR).
And let’s not forget about the other health woes we face as we age, these too can cause aches and pains. Determining if a symptom is due to pred withdrawal, PMR, or adrenal insufficiency can be a challenge. I try Tylenol first to rule out PMR related pain.
None of us wants to be in pain or on medication however quality of life factors in our decision making.
Tylenol [paracetamol] is an analgesic and is used to reduce fever and relieve minor pain caused by conditions such as colds or flu, headache, muscle aches, arthritis, menstrual cramps and fevers.
It is not an anti inflammatory drug… so doesn’t work on the inflammation caused by PMR.
We do suggest, that if you have aches and pains and you are not sure if they are connected your PMR or something else - then maybe try a painkiller first. If it helps then your pain unlikely to be PMR… if it doesn’t help, then it probably is your PMR causing it.
Hello, I am at 5.5mg and decided last week to start a 5 week taper to 5mg which was reduced on Thurs. I was ok until Friday when added in to the day was a a whole load of stress and I have felt pretty awful since, ache, very tender, tired with feeling a’bit off’. Determining as to if this is a withdrawal, flare or adrenal issue is so tricky! I am interested in splitting doses as you mention, an endocrinologist has suggested this to me. So are you able to tell me the times and dose you take. If that’s ok!
I wake in pain every morning 4/5am. I take over the counter cocodamol, which is a little effective - stronger is more effective but causes other issues. Then at 7/8am I take pred after breakfast. And things are more manageable. Splitting doses may be worth a try. Thanks 😊
Usual advice for splitting dose is approx 2/3rd in morning with breakfast and 1/3rd last thing at night. The 1/3rd should alleviate the 4am onslaught of cytokines, but not be too much to disturb sleep unduly.
I have wondered the same: mildly sore thighs when walking but doesn't prevent a steady walk, and there's an occasional twinge in one shoulder. Carry on, or is this the 'drip' that PMR Pro refers to?
Actemra DOESN'T "reprogramme your system". It pushes ahead of the inflammatory substamce IL-6 in the queue and takes the seats (receptors) it would occupy. Unless the IL-6 is sitting tight on the driving seats it can't create inflammation.
However - if you have got to 5mg pred on your own - you really don't need Actemra as the potential problems are no less than the potential problems with low dose pred. I have been on pred for a long time and was stuck at about 19mg for PMR. After well over 2 years of Actemra I am still at 7mg - Actemra only works on a single mechanism of creating inflammation and if your PMR involves others - and like GCA it often does - then Actemra alone won't get you to zero pred. In the case of GCA this applies to about half of patients and that was clear from the clinical trials. At 7mg and two-weekly Actemra injections I am stable in terms of PMR - lower and the bicep tendinitis returns. And that is all my rhuemy is interested in: lowest doses that keep me stable.
Really I was using the word reprogram as a shorthand. And if it's been successful for you that's fantastic, I certainly didn't mean to in anyway denigrate the use of it.
I just meant that for me I confess that it does feel a bit scarier than a pill that I can just stop taking. However, my ex-wife was on a biological (Humira) and it completely saved her from TERRIBLE Crohn's disease. She's been in remission for years now.
But as many people have said, if I move to maintain at 5 mg of bread does not a lot of reason to switch, particularly considering my diverticulosis. And I'm not even sure I could get approved for by my insurance company anyway.
I am 5 years down the line and 15mg seems to be the magic dose for me to be pain free. Stiffness and shaky legs don’t go away though. I’ve managed to get off pred a few times but only to end up back on it. It’s a struggle. Good luck.
Two years off pred. And totally pain free.Was on it for three years. The right dose always left me totally pain free. I know I am one of those lucky ones.
A fair enough question as I asked it myself on the Mayo blog. No, once down to about where you are you will have niggles back and all the way down to nothing. As you note, it’s nothing like full blown PMR. I’m now off prednisone but have some stiffness that resolves once moving but comes back if I sit. It’s been 8 months since I stopped the treatment and it is a very slow recovery. My bloods are all normal so no inflammation but my doctor says it takes time. I am hoping for a year from the end that it will all lift but hard to separate from general aging. Hang in there so you get off the drug.
I would like to thank enduros for the original question post, as I have been wondering what others experience, perspectives and opinions on this are, and everyone for their replies to this.
I have found all of the responses both interesting and helpful in shaping my own perspective and placing myself somewhere in this (incredibly large and seemingly constantly shifting) ballpark.
Hope everyone’s day (or night, depending on where you are) is a good one.
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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.
Has anyone had a massage while on pred?
Kinds of pain
Is it PMR, Old Age or what?
Piriformis Syndrome 
