I am 57 year old female with severe body pain. The all over pain is ache but the severe pain is lower back. When I explained this to rheumatologist she diagnosed PMR. Started taking 20 mg prednisone. It helped with the ache but the back pain is still there. It eased the back pain some but not all the way. Now that I am tapering, back pain is back with a vengeance. Does anyone else experience lower back pain with their PMR?
PMR Really?: I am 57 year old female with severe... - PMRGCAuk
PMR Really?
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KimmyK961
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hello and welcome. I have a few questions to help people reply meaningfully. Can you describe that back pain a bit a bit more in terms of exact location and nature of the pain ? Does anything help the pain? How long have you been on 20mg for before tapering and what dose are you on now? What investigations did you have?
Back pain is all across lower back. After sitting for 1/2 hr or more it hurts much worse. More on the left side that right. Can only take tylenol which doesnt touch it. Was on 20 mg for 2 weeks. Almost relieved it. Rheumatologist told me to go to 15mg. On that for one week. Then told to go to12.5 mg. I had been on it for 3 weeks because I told her I was in much pain. Still in pain and she wants me to start 10 mg. Her plan is to start me on kezvara. I am not sure how I feel about that. When I started prednisone my sed rate was 41 and my c reactive protien was 15.
If you have PMR -then that’s much too fast a reduction.
If Tylenol doesn’t touch the pain, then it does sound as if it could be PMR.
Have you tried heat therapy on back?
Me and the heating pad are best friends..lol. It feels good when I am using it but no lasting effect afterwards.
You can get lower back pain with PMR. Thus link gives a nice picture of the typical pain areas.
Normally one stays on the initial dose for 4-6 weeks before reducing and then at a much slower rate. Going too fast just uncovers the inflammation again and it sounds like your doctor made you go too fast. Unfortunately, this is a fairly common complaint here. Remission doesn’t happen that quickly.
You do need to bear in mind that you do have to rest. The steroids don’t just get rid of the pain so you can crack on with normal life, especially in the early months.
My doctor is anti steroids doctor. She will only give me 2 weeks worth of pills at a time so I am constantly having to deal with the pharmacy. I know the taper is too fast but she doesn't care. It's very frustrating.
Oh dear. Kevzara might help and is normally indicated if people have trouble reducing their steroids after an appropriate length of time, so I don’t know if your funding is dependent on that being the case and what the criteria are exactly. Currently, your Pred regime has been too fast from the start and has been used for only a short amount of time. This might be fine but it’s worth finding out and if you are not eligible, you need a different doctor for the way forward. It is worth trying it but it might not allow you to be free of Pred in that it blocks only one type of inflammatory substance IL-6. If you have others in the mix, you still need the wider acting Pred.
If she chooses to diagnose PMR then it is pointless being anti-steroid since that is the first line management strategy. Find a different doctor! Unless she starts the Kevzara soon and uses pred properly in the meantime. That would be OK.
I have low back pain with my PMR - caused by myofascial pain syndrome. Will write more later.
No link?😊
Hi, could you post the link to the typical pain areas please? I’ve been off Prednisolone since May but am increasingly in pain, particularly across 2 areas of my back. I’ve resisted taking Prednisolone again but paracetamol just takes the edge off. Not sure if it’s arthritis that’s been masked while I’ve been on steroids. Thanks.
I’ve posted this one because I like the detailed picture of muscle groups.
my.clevelandclinic.org/heal...
Many thanks
Another picture from a different article
Affected areas PMR
Thank you!
Yes me too - why I attach picture sometimes in replies.
Have you tried a painkiller fir your back? If so, did it work? You may have PMR and something else.
I've tried tylenol. Didn't touch it. Have to be careful of what I take as I only have 1 kidney.
Sounds like it may be the PMR in that case. As the others say you are reducing very fast. Can you go to another doctor who understands PMR and how steroids work?
Sounds like the back is something other than PMR, although if your other aches and pains have responded well to pred it would indicate you do have PMR as well.
I'm a great believer in the power of a competent physiotherapist. If you can have a couple of appointments with a physiotherapist they would assess you, prescribe some appropriate exercises, and then follow up to make sure they are helping you. They also have other methods of treatment which they may feel will also help, especially during this early acute stage, which they would give you during the appointment. I started going to a physiotherapist quite regularly when I was at about 7 mg pred. One thing she discovered, of which I had been entirely unaware, was that the muscles in my back were, as she described them, as hard as bricks. They were in spasm. She used dry needling over a series of (I think) three appointments, which "reset" the electrical impulses in those back muscles. As I had suffered off and on with back pain for many years by this point, and had a set of exercises which I did quite faithfully (and they did help a lot) it was kind of enlightening to discover there was this other cause of back pain. In any case my back has been pretty much okay since then, nearly nine years ago. I still do my exercises but haven't needed any more dry needling. I think the same effect can be done through very deep massage, but this may not be a great idea for someone with PMR, hence the use of dry needling. 🍀
Oh, I should add, my physiotherapist said that some muscle spasms can be strong enough that they can even cause fractures!
I have often thought the back was something else. Muscle spasm is a great description of what I am feeling. So painful that I can't walk. Had to have husband help me out of chair lastnight. After I get up, straighten out, and move around a bit it gets somewhat tolerable.
hi, I’m also 57, diagnosed 2018 PMR AND Fibromyalgia . I also have cervical stenosis and lumbar stenosis (arthritis) . I consider low back pain as a different animal. I treat it with Ibuprofen and or Tylenol . My PMR I can actually feel it in upper arms, shoulders, upper back… you should evaluate your lower back for arthritis (spondyloarthritis). Best! 🌹
hi Kimmy, I was diagnosed with PMR and RA in April 23. I’ve also experienced severe back pain. Few months ago I went to a new rheumatologist who did an extreme and thorough investigation he has now changed diagnosis. He has ruled out RA and has now diagnosed axial Spondylarthrits. He has taken me off methotrexate and changed the biological that I’m on and we’re waiting to see how the new medication go. Apparently Axial Spondylitis mimics PMR.
I would recommend trying to find a different rheumatologist or if you can’t change talking to your current one about the possibility of this diagnosis good luck, I feel your frustrations and hope you’re able to resolve this issue cheers Margaret.
I had lower back pain with PMR - steroids helped - started on 40mg and now on 6mg - nearly 6 years in
Hi KimmyK961! That back pain sounds like an issue all by itself. My PMRGCA plus pred has weakened my muscles & it doesn't take much to damage them. Mid & lower back particularly prone, and take weeks to heal if I've lifted or twisted awkwardly. Codeine damps it down but the only thing is rest. Hope things improve.
Have you had an MRI on your spine? That's the first thing I was told to do when I started complaining about my back. Also, how old is your mattress? An old mattress can cause back pain as well. And sometimes it's just the "wrong' mattress. Too soft or ?? If this sounds crazy, it isn't. But I'd do the MRI first. I am just last week declared "in remission" for PMR. But the back pain is making me crazy. I'm in physical therapy for it, but sometimes I think it only makes things worse. Tylenol (USA) helps a lot though, but I understand you probably shouldn't be using much of that. Try a muscle relaxer. And I also agree, you're going way too fast on the pred. Maybe it's time to find a different doctor.
Lower back pain has always been part of my PMR. It is like all the large muscles below the points of my hips are frozen and tight. The extreme stiffness makes movement very painful when it is at its worst and is recognisably there, even on pred, except for at much higher doses than I am on. I have an inkling that years of undiagnosed (and therefore untreated) PMR has affected my posture and weakened the muscles, certainly the core muscles. I have acquired a number of physio exercises over the years that are intended to strengthen the core and to stretch the large muscles that are attached to the back of the hip. If I do gentle stretching daily, there is a marked improvement, but it goes back to how it was very quickly if I lapse.
I gave up on physios, as I have found them a bit too gung ho, they all wanted to work directly on the frozen muscles. I find all that poking and prodding excruciatingly painful. It works to free it all up and then it all pings back overnight and I am back to square one the next day. I did have some success with an osteopath, who has worked extensively with people who have PMR, but sadly he is beyond my financial means now that I am retired. So if you go down that route, I would really recommend finding someone who has a good understanding of how PMR works for us. Our muscles do not seem to respond to manipulation, in the same way as those of a healthy individual would.
If it is down to PMR, I would say that your best bet is to keep up the mobility with gentle stretching and perhaps exercising in water, if you have access to a pool. You can walk up and down the pool, if your shoulders are too sore for swimming. Overall, walking is usually very good if the hip area is most affected by PMR and prolonged sitting makes it worse. That can also be true of lower back pain. However, I would be reluctant to recommend exercise, unless other underlying conditions have been ruled out medically. If the source of the pain is skeletal, potentially you could be making things worse. You really need to discuss this with your doctor.
Hi there,
There’s some really good advice here about the speed of taper, but just to add to this, I found that back pain was definitely a part of my PMR. I’d lived with back pain since the age of 10, had multiple spinal operations, but as the PMR started I had a back pain that was different to anything I’d experienced before. I would struggle to tell you how it was ‘different’, but I just knew it was, and that it meant something that was not normal for me was going on.
It also appeared again with the Vasculitis which again helped me to identify that there was something going on.
As others have said, it went away very quickly after starting the pred.
Good luck!
Yes. And my gp decided I needed an MRI scan which showed I have a slipped disc (L4/5) (as well as PMR). I can differentiate between lower back pain from the spinal diagnosis and PMR pain. My super-slow tapering means I don’t have PMR pain at present but I’ve reached 8mg Prednisolone so I’m not sure what lies around the corner.
when I got diagnosed with PMR I had suddenly a pain in my lower back which causes a burning pain in my upper thigh. The steroids didn’t touch my back pain or thigh pain. I had an MRI scan but it showed all clear, they reckon it could be over sensitive nerve endings. I stopped lifting anything Heaviside and have had acupuncture every Tuesday at the training college near where I live. The burning pain in my left upper thigh comes and goes and my back pain has sort of gone to sleep, if I cough or lift anything I can still feel it’s there. I am starting physio in 4 weeks, I’ve been waiting 4 months for the appointment. So I do reckon it came on with PMR as I got diagnosed early Dec, I’m 61 now.
Where is the burning pain in your thigh? Side, front, back?
Sorry only seen this, it is back, I’ve been told it could be due to tightness, it’s not sore but just there most days, im
hoping the physio when i see them can advise me if its coming from my back, my back is quite good now.
Hamstrings can be affected in PMR
Have you had an x-ray to determine a possible alternative cause? In my case there was a weakness in my lower back (not at home so can’t give you the technical description), and I think PMR doesn’t help but is not the cause. I do daily gentle floor back exercises to keep everything as flexible as possible. Ps can you change your rheumatologist? 😀
Hi, I can only talk about my experience which may not be the same but I’ve had back issues on and off for years. When the PMR was diagnosed I started on 15 mg pred and all pain including back pain improved and actually went for a long time. Since tapering down some aches returned but back pain was awful. I’ve subsequently learned that I have osteoarthritis in the back and definitely my hands as I’ve developed nodes near fingers since tapering down the pred. basically my understanding is that the pred will work on any inflammation but pain may not all be PMR. I’m not doubting my PMR, just that treatment has masked other issues too. Hope you get some good pain relief soon, all the best.
I think you need to go to an orthopedist to be evaluated. Then you will know what your problem is and go from there. 🤞
Welcome to the board, many lovely and super knowledgeable people here.
Seems the reduction was much too fast, in my opinion. I also have a theory from reading everyone's stories every day for 1.7 years now, that the "younger" you are with this PMR, the higher dose is needed at first. I eventually had to take 30 mg for 5-6 weeks to really clear it out and feel like myself again (after starting at 15 mg).
Diagnosed Feb 15th 2023, after begging for a Pred trial and after ruling everything else out.. and I am just on 14 mg now. Every time I tried to taper like you did at first, the pains came back. Low and slow for me now! I also am one who has to split their dose, as the effects do not last 24 hours on me, just another thing learned on this board that helped a lot.
Please keep us updated. You'll figure this out, it takes trial and error and time. We all react differently to meds.
that the "younger" you are with this PMR, the higher dose is needed at first.
Not necessarily-but probably the longer it took to get diagnosed -which may equate with age - but not always.
Yes, agree..I just have it as a working theory..seems most times when the standard 15 mg or 20mg isn't enough, the poster's age is in their 50s.
By the way, been meaning to tell you that I did end up getting the 1 mg pills finally a few months ago..and am on 14 mg now, going to try 13 mg next week. A year ago, I would have killed to get that low (for me), because I was taking 35 mg during a flare. So quite happy all around right now!
Good to hear..,😊
I was 51 when PMR symptoms started - though I had had myofascial pain syndrome problems for many years prior - and almost 57 when I got pred for the first time. 15mg achieved a miracle in 6 hours! Doesn't mean it was short and simple PMR though - 15+ years later I'm still on pred and now plus Actemra!!!
Also, surprised they haven't ordered an MRI to look for Degenerative Disc Disease or bone spurs pressing on a nerve, or a herniated disc (these are usually more severe pain than the DDD). I have DDD and while quite painful at times, it not excruciating and painkillers help a little. I get epidural steroid injections for it.
Regardless, everything you wrote sounds like PMR..I think you need a new doctor. That reduction plan was crazy fast.
My PMR started as lower back pain. It got worse and worse till I couldn't walk without a walking stick, and then it stiffened up to the state whereby I found I couldn't stand up if I sat down for more than a few minutes. My back felt as though it was ratcheting when I tried to change from standing to sitting, or sitting to standing.
It took around 9 months for it to be diagnosed by a hospital 'specialist', who tried me on several different medications to ease the pain and stiffness. None of them worked, so then he put me on 15mgs of Pred per day. The difference was amazing. Almost immediately the pain was gone and I could walk, sit and stand without pain. I stayed at 15mgs for around a month, then began to slowly taper 1mg per 8 weeks at a time.
By the sound of things your rheumy started you on too low a dose of Pred. This is now being excacerbated by him/her telling you to reduce, when quite obviously the PMR is still rampant in your system. If they insist on this regime you'll end up bedridden in short order, so ditch that rheumy and find another one.
When looking, ask them if they know what PMR is, and if they don't, then find another. When you've found one who knows what PMR is, and who is willing to read and go by the recommendations on this site about how to deal with tapering, then you know you've found the right person for you.
Don't forget that you are the customer, they only provide a service, and if they provide the wrong service then they must expect to lose the customer to a more clued-up provider.
Best of luck.
I just want to thank you all for your replies. All have been educational and supportive. Also makes me feel like I'm not alone in this torture. Thank you all so much.
Yes, but I have recently found that I have 3 bulging disks. MRI.
I definitely have PMR but also osteoarthritis in my hip and lower back pain too since well before the PMR symptoms began. The higher doses of steroid masked those pains but now I'm taking a lower dose they're back. I find movement helps.
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