New to PMR

Hello, I have had this since mid March. However my pains started in the thighs, then hips, groin and knees and it was only after this that I got the pains in my shoulders and arms. So I was wondering if anybody else's pains started "back to front"?? Also, I now have very stiff and possibly swollen knees, so is this still part of PMR does anybody know?? Thank you to anyone who replies.

37 Replies

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  • Hi Edmonton,

    Welcome. Can't give you a positive answer, unfortunately, but it seems that PMR affects most people in slightly different ways - which I suppose is why it's difficult to diagnose sometimes. Have you been diagnosed with PMR?

    Perhaps your lower body is more susceptible than your shoulders/arms for some reason? Work related? Accident ? Anything you can think of?

    Do you have arthritis as well maybe, that could account for swollen knees?

    My background is GCA, but I'm sure there are plenty of PMRers who can give you a better answer!

  • Thank you so much for swift reply! Yes was diagnosed in March after loads of different tests and scans, it was the steroids that took the agony away that made them confirm it was likely to be pmr. But I suffered so long before and could hardly walk in the end!

  • Yes I think we all relate to being like that, or in my case because my shoulders were worse it took me about 10 mins to turn over in bed! Very nearly needed a crane!

    Just keep your eyes on your knees - if you know what I mean, the swelling could become a problem! Hope not.

  • There isn't really a "way round" - in some people it is hips, in some it is shoulders, in others both - and even neither! Doctors seem to have a very fixed view of what PMR and GCA look like but in fact only a relatively small proportion of patients have any one symptom.

  • Thank you at least that makes me feel a bit better. But if it hadn't started in the thighs It might have been diagnosed earlier and before I was unable to walk at all!!

  • I was exactly the same as you, really bad groin pain initially. My knees are like yours and I can get a severe stabbing pain in them when I'm coming down stairs. A young doctor amused himself, but not me, by moving a fluid deposit from one side of my knees to the other. I don't think that is PMR more the wear and tear on a badly designed joint.

    My PMR shoulder and arm pain came a bit later and persisted longer, even now when I've over done things.

  • That's really good for me to hear of someone who had arm pain after the leg pain, thank you! Also someone who has bad knees as most info on pmr doesn't mention knees at all!! Thank you for your reply.

  • I have bad knees - but that arthritis - different beast altogether, which is why I said keep on eye on swelling!

  • I had rather vague but occasionally sharp knee pain that came and went and one rheumy announced it was "OA, I can feel it". But it went away after I was eventually put on pred although it took a while, and there is absolutely no sign of OA in my knees now. So, so much for your clinical diagnostic skills, Mrs Rheumy as that was 13 years ago - you'd think OA might have progressed by now!

  • Mine attacked after I had lost both parents in a year, had a hysterectomy, then had to have a fusion on my back. I was doing fine with my surgery recovery for the first 5 wks, then a horrible pain started in my left calf. Of course, my docs suspected a blot clot, or something else related to my back surgery, but all tests came back negative. It drove my poor physical therapist crazy, trying to figure out the cause of this horrible cramping and knotting in my calf (turned out to be myofascial pain syndrome which eventually hit many other spots on me too, as my PMR struck). Then suddenly, I developed excruciating, burning pain on both sides of my groin. I ended up in urgent care and they weren't sure what was wrong, but gave me a steroid dose pack, and amazingly all pain was gone in a day. But, as I tapered off that over a few days, it came back, along with more pain in both calves, and my thighs started in too. It wasn't until a month or two later that my shoulders and upper arms joined in. Even my ESR wasn't very elevated at first, which also slowed down getting diagnosed. It was finally when I was in so much pain and couldn't move that I went to the ER and found that my sed rate had bounced up to 51, and triggered some suspicions of what it was. A steroid shot alleviated all symptoms within 4 hours, and helped to finally confirm diagnosis. It was a long road to diagnosis since I didn't follow the "normal" progression of symptoms.

  • Wow that was a long story to diagnosis. Mine was similar and with such terrible pain in my thighs, groin and hips too, the pain went down my calves some days too. It wasn't till a few weeks of that and when I couldn't move in bed, climb stairs or get dressed that the pains started in my arms and shoulders, I actually thought that was due to straining my arms to try and haul myself up all the time, even off the toilet, every chair seemed incredibly low and presented a problem! How many tears I shed too, I tried to be valient but the frustration and pain was just too much at times. The steroids work a treat now for about 12 hours at a time but it's so worth it not to suffer like before. It's so good to read everybody's experiences, it helps me to realise I wasn't going mad all that time!

  • Hello Edmonton, that could have been me writing your post! Exactly the same symptoms in exactly the same order. I actually thought with the arrival of groin pain that perhaps both my hips had suddenly given up the ghost! Shoulder/arm pain and stiffness followed and I found myself totally immobilised and bedbound with the pain and travelling to rheumy appointments by ambulance and wheelchair, alas all to no avail. It wasn't until nearly a year later that, with additional and other nasty symptoms arriving on the scene, and four different GPs scratching their heads, a brilliant and trusted pharmacist suggested PMR and GCA. Thank God for whoever invented Prednisolone....even with all its side effects!

    I also experienced the stiff and swollen knees that you describe, with the stiffness also affecting my ankles, and interestingly these were the last places to return to normal many months after remission from PMR and GCA - I dare say that the long term steroids also left their mark for a while. There are muscles around the knee joint so, of course, these can be affected by the inflammation of PMR, but also there could be a bit of fluid around the joint - bursitis can be an add-on symptom with PMR. I used to massage my knees a lot, particularly after a warm shower, and I do think it helped. They seemed to be easily injured during my PMR days and if the pain worsened I would wear one of those tubular support bandages for a couple of days which also helped.

  • Wow well that's made me so happy to read that you had the same symptoms and in the same order. I had such pain in my groin, it felt like a knife trying to saw my leg off! Then with the pain in my hips I was convinced that I needed two hip replacements!

    I have only had this since March and am now on 12.5 mg of pred each day, how long do you think it takes to get into remission or at least back to living quite normally and without so many pains in my arms for several hours each morning?

  • There is no real answer to the first question - about 75% of patients with PMR are able to reduce the dose and eventually get off pred in something between 2 and 6 years, one Italian study found a third of their patients were still on pred after 6 years.

    On the other hand - I have had PMR for 13 years (don't worry, that is not common) and have been on pred for nearly 8 years. I don't consider I live anything other than normally - it was a different matter for the first 5 years when I wasn't on pred though! I travel, I do most things I want. You learn to work around it - and I will not compromise on my dose of pred. I take what I need to feel well.

    With regard to your sore arms - at what time do you take your pred? The ideal time to take ordinary plain pred to avoid morning pain has been identified in a study to be 2am. If you can't be bothered to wake up (and I do know people who do) then taking your pred as early as possible after 4.30am also works quite well - take it and settle down for another couple of hours and it will be starting to work by the time you get up having not allowed the new lot of inflammation to get a hold. If you are one of the people for whom pred takes a long time to work then it is even possible to take it before bed - no morning problems!

    And YOU have to do your bit. Pred doesn't cure, the actual disease continues, an autoimmune disorder that makes your muscles intolerant of acute exercise. I still cannot carry a heavy shopping bag or lift heavy items without my arms reminding me next day and for the following days. You have to find ways to work round the limitations - and allocate your spoons wisely:

    butyoudontlooksick.com/arti...

  • Thanks for all of that interesting information and tips, will bear it all in mind

  • I'm one of the unusual ones that took 40mg/day to get my inflammation and pain under control in the beginning. It took 9 mos to diagnosis my PMR and I've been taking prednisone since Sept, 2014. I just reached 1.5 mg/day a few weeks ago, after several flares along the way, even though I was going very slowly on my taper. I know the PMR is still lurking, because every once in a while if I do a little too much, I feel some of the early pains trying to set in.

  • Yes, PMR targeted my legs right from the start and my lower back. I had a very gradual onset and it was some time before it spread to my top half. It travelled upwards (I do like to be different) but once in my arms and shoulders it wasn't going to go back down! If you've got stiff joints - as opposed to muscles - you should mention it to your doc in case it isn't PMR causing that problem.

  • Good to know it sometimes goes from the legs to arms,like mine did. I'm going to have some muscle tests in my legs next week to test the nerves and muscles so that might throw some light on the state of my knees.

  • It sounds as though you are being well monitored - always worth taking advantage of tests that are offered, especially as they're not easily forthcoming these days!

    Have you also had your Vit D levels tested or are you already taking a Vit D supplement? I ask because many of us are being found to be deficient in Vit D and, if that deficiency is quite severe, it it possible to experience pain not dissimilar to that of PMR.

    Another recommended test is a DEXA scan for Osteoporosis. Steroids can thin the bones in some people but it's always useful to have that initial scan at the outset of taking steroids just to get a base level for future reference. It is usual for Calcium plus Vit D to be prescribed alongside the steroids for extra bone protection.

    I do hope that you have had a good improvement in your pain levels since your initial steroid starting dose - by at least around 75%. If so, it is now important not to reduce down through the doses too quickly or in too large decrements. Slowly slowly is key. It isn't possible to say how long it will take to reach remission as we can all be a little different in both how we present with our symptoms and our response to the medication. I was lucky in that I was able to get down fairly quickly from my initial 40mg starting dose under the guidance of a wonderful second rheumy until I hit a stumbling block at the low doses. But flares in the inflammation can be avoided by reducing slowly (by no more than 10% is a tried and tested method) so that it's easy to see at which point any lurking inflammation might be coming to the surface and get on top of it quickly with a return to the previous dose. Meanwhile, we all have to do our bit by learning to pace ourselves and not overdoing things, especially on what seems like a good day - PMR has to be respected or it will come back to bite - this is probably the hardest lesson most of us learn in the early days.

    Good luck with the tests next week and do come back and let us know how you get on.

  • Yes I will thank you. I am taking iron and vitamin D. I started on 20 mg steroid and now reducing by 2.5 every 2 weeks so now on 12.5. Think I have a lesson to learn in not over doing it on the good days. Thanks for all your help and advice.

  • You would be wise to make it a smaller drop next time and preferably after having remained on 12.5 for an extra couple of weeks, remembering that each drop the lower you get is a higher percentage drop than the previous one for the body to cope with. 12.5 to 10 might just be a step too far, especially after just 2 weeks at 12.5mg.

  • My symptoms weren't quite like yours (no knee trouble) but certainly started with finding it hard to stand up and take the first few steps - not easy when I was still working in a public library with this "gel phenomenon" occurring within a couple of minutes whenever I sat down. I, too, thought I was in line for double hip replacement (in fact my hips are about the only part of my body with no sign of OA). However after a few months I got a terrible stiff neck which never got better, and was eventually in that state of how do I get out of bed this morning, how do I turn around to look out the rear view window, how do I climb in and out of the bathtub, how do I stand up from the floor after yoga.....

  • Thanks for reply. Good to hear your side of things plus the similarities

  • Yes getting up from a sitting position was horrible I needed help at times due to pain and weakness. Bathing, changing clothes was very challenging. I weaned off of pred 2 months ago. My pain is back but at an acceptable level I would say a 3 on a scale of 1 through 10. If it gets bad like it was I will probably have to go back on. Steroids have so many side effects. I really don't want to. But we can't always have what we want can we. Take care.

  • It's very encouraging to hear that you actually got off the Preds and are managing. Especially when you are so helpless when it's so bad at the start, to think you can get over it is wonderful!

  • Reading others' memories of their symptoms, and recalling my own, I am flooded with gratitude for our dangerous little friend, pred!

  • Hello, Reading your post today has reminded me that my pains started in the back of my knees and it was the bilateral nature of the pain that suggested for the first time that it wasn't sciatica. It extended into my groin and buttocks and right down both legs. I spent months on gabapentin and later opiate patches without relief while my body gradually seized up to the point where I thought I would be in a wheelchair. Like many others here, I was almost unable to turn over in bed, go up or down stairs, climb into or out of the car, and if down on my knees, could barely get back up without support. My hips felt like rusty pins and the pain of lying on my side was terrible, so I had to sleep on my back, almost immobile. Horrible memories!

    I found a hot bath to be very helpful in the morning, about 45 minutes after first getting out of bed, if I felt safe enough to attempt getting into the bath at all. Gently massaging my calf muscles in hot water made nerves jangle all over my body, and I had to turn over onto my knees to get out of the bath, but it definitely helped.

    I guess I was lucky that a young GP at the practice was suspicious of my sciatica self diagnosis and sent me for blood tests, the result of which finally led to the PMR diagnosis several months later. The pred has given me back my mobility, but I still suffer with pain in my calves every morning to remind me of what I so nearly became.

    I'm always grateful for the support and advice from this forum. Do hope you find relief form your pain and information and advice to help you. Chrissie

  • Hello Chrissie, wow all your horrible memories was just what I had - such agony. I was so active previously, 66 but always chasing after young grandchildren, then finally feeling almost crippled. The doctors didn't think it was PMR as I had no pains in the shoulders. Once I started on Pred it was miraculous, the reduction in the pains. I'm now down to 12.5 a day and I'm so much better. Yes, this forum has really helped me and it's so good to hear about so many people who were suffering just the same as me! Forgot to say the pains in the neck, shoulders and arms did catch up with me eventually and are still there now along with the knees.

  • So glad you are feeling better

  • Edmonton I started off with flu like symptoms, stiff neck but then came pains in my thighs and groin, couldn't get out of chair, bed and difficultly in walking, I had no pain in shoulders, my CRP was 83 don't know what ESR was, and was put on 20mg pred and no pain felt good, that was Jan 2015,

    I seen a rheumatologist from the start, and after 2 week they decided to reduce my pred, was down to 12.5 mg within 2 weeks, and all hell broke loose, sever headache, couldn't open my mouth with jaw pain, arteries very prominent at sides of temple, GCA was diagnosed then.

  • Mine started with thigh pains, thought it was due to a LONG walk with my sister's walking group. The following days it started in shoulders and arms, couldn't get out of bed without help. We were moving house at the time from Spain to UK, by the time we moved in it was 2 months before I got diagnosis. Tried Bowen treatment before diagnosis, but treatment room was upstairs which was difficult so didn't go back.

  • Mine started in my thighs then hips and arms.I couldn't turn over in bed,get out of the car or bath without extreme pain!

  • Know that feeling so well. How long ago was that and how are you now?

  • That was November 15,I don't have pain apart from one hip .I take 4mg of Pred and have slowly reduced from 15 at the start.I still have fatigue and don't feel like me sometimes😕BUT getting there!(don't know where)😂x

  • My pain started inner thighs, butt like I had been working out. It than spread to shoulders and neck. Are your knees painful that is joint pain. That could be a separate issue such as arthritis. Take care.

  • Your pain sounds very much like mine. Shoulder and upper arms came after hips and thighs then knees. And now 11 months in it is my knees that act up first . DR thought knees might be arthritis but exrays and steroids prove nope. PMR. ... and the fight continues

  • Good to hear of yet another case just like mine, especially the knees!

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