I haven’t yet been diagnosed, but my GP is very firmly leaning towards a PMR verdict. We have a telephone consultation next Monday to finalise. I’m not so sure though, I would love to hear your thoughts.
I began experiencing difficulty rising from a deep knee bend back in March. I’ve got a spare fridge in the garage and could squat down to put things in but then couldn’t get back up again without holding on to something. I just assumed it was my knees (I’m 59) and didn’t seek advice given all of the issues getting routine appointments with GPs at the time.
A few weeks later I experienced crashing fatigue and was exhausted by the slightest effort so stopped going on my daily, lockdown walks for a while. I half wondered if it was Covid but had no other symptoms and I had been doing some decorating so assumed I’d overdone things. Once the fatigue improved I resumed my walks but noticed that it was hard to swing my legs from the hips and my gait had changed to more of a swinging of my pelvis in order to thrust each leg forward. It was so tiring to walk in that way that I stopped again. I also noticed that it was really hard to lift my legs to go up steps, cross my legs or get in and out of the car. No pain – just no strength, though if I laid on my back I could replicate the same movement and bring my knees to my chest with no problem. I also realized that I couldn’t do a deep knee bend or squat anymore, whereas previously I could get down but not up again.
By this time it was easier to get a GP appointment so I did just that. My GP ran a raft of blood tests, including testing for RA, but omitted to ask for CRP. Everything bar ESR came back normal, but my ESR was 57. Her first thought was PMR but she spoke to a Rheumatologist who suggested testing my CRP as well. She redid the ESR at the same time and my CRP came back normal and my ESR had dropped to 36.
She also referred me for Xrays which took a few weeks to happen. In that time I had started to feel quite a bit better and even considered joining my son on starting Couch to 5K, but by the time I’d bought myself a new sports bra and a phone holder to go on my arm all the symptoms were back again and although not painful (maybe 2 out of 10?), the effort needed to even just go upstairs was utterly exhausting. There’s no circadian rhythm to my symptoms at all. It’s stiffness and weakness after any period of inactivity which wears off within 5 minutes or less (though the inability to deep knee bend is constant).
The Xrays came back normal and my GP remains convinced that it is PMR. I had one final ESR test on Monday and it has gone up slightly to 40 (so 57 then 36 then 40). My GP is off for the rest of this week but we have an appointment booked for next Monday to discuss starting Prednisolone.
However yesterday and today have been the best for ages. I feel ALMOST normal!! If it weren’t for this awful heat I’d go for a walk, but I’ve definitely been moving around the house with more vigour. I’m very conscious that I felt better before and then “crashed” again so I’ll take it steady. However I’m now even more concerned about starting Pred. If I’m feeling better anyway, how will I know if the Pred is having any effect or if it’s the natural progression of whatever I’m suffering from?
I’m also concerned about the effect that unchecked inflammation could be having on my organs. I can’t find reliable sources of information as to how serious an ESR of 40 is.
Is it dangerous?
I don’t want to irritate my GP too much by challenging her diagnosis but neither do I want to start a course of drugs which may not be necessary.
Has anyone experienced anything similar? (I’ve ordered a copy of Kate’s book but won’t get it until Wednesday next week
Thanks in advance for any thoughts!
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PurpleNDH
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Have a look at this - although not sure it’s typically PMR. You usually have problems in the morning with main muscle groups - shoulders, hips and knees, which early dats usually wears off as the day progresses...and age is not factor.
ESR and CRP can be raised for a variety of reasons, not necessarily PMR.
Has your GP suggested a trial period of a Pred to see if that helps? That may be the answer, so long as you don’t take steroids for more than a couple of weeks they will do no harm, and you can come straight off them.
I was going to suggest a trial period of pred but the massive improvement I've seen yesterday and today with no treatment make me doubt if a trial period is conclusive or whether it would have happened anyway. (Mind you, I could feel worse tomorrow....hope not!)
I think my PMR varied for the first few months but did bear a close resemblance to what you describe. One criterion for PMR diagnosis is that the symptoms have lasted more than 6 weeks.
You have something going on, the ESR is raised and you have typical symptoms of some autoimmune disorder or other. The ESR is a sign there is inflammation somewhere - and long term it probably isn't very good for your body. Long term uncontrolled inflammation is a risk factor for various diseases including some cancers. If it is PMR/GCA then the inflamamtion is in the arteries and that over a long period is a risk factor for cardiovascular disease of various sorts.
It may be worth keeping a diary of when the symptoms are worse - are they in the day or two after you having had good days and done more to take advantage of that?
Sorry - a follow up.....if it's inflammation in the arteries, can it not be picked up on ultrasound?
I also saw your comment (from a year ago!) about interleukin 6 not being raised in every person with PMR/GCA but do you think it would help to ask for a test of that too?
IL-6 isn't routine test so I imagine only large hospital labs would offer it and not to the average GP. I had it done by a rheumy - don't think I was ever told the result though.
As for ultrasound, that works for GCA which affects larger arteries and it works for superficial ones like the temporal artery and the brachial artery in the armpit. It doesn't work for the aorta though I believe. But while PMR is almost certainly a form of vasculitis it probably affects capillaries - far too small to be seen. The imaging of choice is PET-CT but again, not universally availabe - we have one machine for our entire region of half a million people (Italy) - and expensive and even it can be negative despite the patient having symptoms.
Hello I've had burning feet and legs for several years but it has gotten considerably worse lately. I also have COPD, although thank God not on oxygen, severe degenerative disc disease with spinal and cervical stenosis and radiculopathy. I'm also bone on bone with knees, have hashimoto thyroid disease and am now pre-diabetics which my doctors think came from the steroid shots in my knees and back. Finally I have tested positive by EMG test for tarsal tunnel in both ankles but podiatrist says due to nerve damage from my back and the varicose veins on ankles, he thinks I would be in worse shape with surgery. Doctors say back is too delicate to operate on back and would only consider if I loss use of my limbs. They don't want to do knee replacement because my back would probably not tolerate the post-surgical physical therapy. I've tried neurontin, Lyrica, nytryptoline, and am now on 90 mgs of duloxetine and 12-16 mgs of tizanidine. My neurologist is totally against opiods and the pain med doctor said no more injections for back because of the pre-diabetes. I'll be 67 next month and not crazy about having any surgeries at this stage in my life.
I apologize for long history. The problem is that I had a vein procedure 2 years ago on right leg which was not successful. I'm wondering if I should suggest PMR to neurologist. Also since prednisone is a steroid I don't know if they would give it to me. I feel like I'm on a merry-go-round and want to get off. Any suggestions? Thanks and bless you. Hope you get better.
Hello There.I’m so sorry to hear what a rough time you’re having.
I honestly can’t offer any advice though.
I don’t know if your comment is visible to the majority of people on here who could help as my original post is quite old. If no-one else responds you might be better starting a brand new post.
I am no expert but it sounds as though you have PMR. my early experience mirrors your s I would be tempted to recommend PRED and total rest for a fortnight. Say15 mgs a day. If you are pain free and feeling ok stop the pred take excercise if you have PMR you will soon be aching and tired. You can then start to manage the way forward alternatively carry on as you are your symptoms should get worse over time mine were progressive over 12 weeks I tried to carry on as normal but pain increased in one knee my quads and upper arms I thought I had damaged my rotator cuff eventually I struggled to get in and out of bed and the loo was a disaster getting on and off. Good luck.
For the first three months I was very like you, in and out of symptoms....no consistency. Then pain, stiffness and fatigue became constant.
I think having been on this forum for five years now , that it can be typical to have a slow start, but for some people symptoms start quickly, almost overnight.
How long does a ‘good’ phase usually last with you? If it’s only a few days before things become difficult I would be tempted to try two weeks prednisolone with not too much exercise and see how you feel.
The previous good phase was about 10 days and I'm only on day 3 of this one so hard to tell. It's sounding like a diary and a prednisolone trial are the way forward.
Hi there I have had the exact same symptoms as you the knees really bad can't get up without hanging on to something and the lifting of the leg couldn't even lift the leg to put my knickers on. I also had really bad headaches and floaters and tenderness at the temples by luck I was seeing my respiratory consultant that day and it explained to him he said you are showing classic signs of mpr/gca contacted my doctor straight away and I was put on prednisalone 60mgs to prevent the blindness within less than a week symptoms with legs and pain in neck and collar bone was gone.
The respiratory consultant said even though your blood tests have come back normal you do have it some people only show normal blood tests. I had pet scan and it showed I have it. I got down to 10mgs and then as I went lower and got to 8mgs I had a flare up so went back up to 10+mgs all disappeared and am now tapering down again and doing it 0.5mgs a month at a time so we will see how I get on.
I am so thankful I saw my respiratory consultant that day as all the doctors I saw said no it's not pmr but it was all along.
I could of ended up blind for life.
Good luck with your journey and although the steroids are a worry it changed my life from not being Jan low to move to getting my life back.
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