Hello everyone - at last i've found somewhere I can talk about things, because there seems to be precious little else in the UK i've found so far.
I'm sure youve heard all of this before and you are going through your own rollercoaster ride of pain and struggle.....but here is me :-
I started about 2 years ago (49y/o), despite being a good 10k runner, and 100k bike rider- started feeling aches, stiff and pains , then last november, incredible cervical shoulder and lower neck pains, back of arms / shoulder - legs and lower back - especially in the morning, but staying around for a longer time than normal - and , muscles straining at a much lower level than they should - i can hardly drive without pain in the shoulders or walk more than 20mins without thighs getting achy.
sometimes the pain eases until the very late evening / overnight - then when i get up it eases throughout the day. its can feel like horrible widespread "tiny strings" of pain....
After numerous blood tests (all normal except low Lymphocytes) head/neck/spine MRIs, 2 EMGs on the NHS (not comprehensive) 5 NHS Neurology appointments and many many GP appointments, they kept labelling me with FND, anxiety, and finally LONG COVID....
I decided to go private at a recent EMG (in Preston) the person found some hyper nerve excitability but said my symptoms were consistent with Polymyalgia rheumatica (PMR) and diagnosed as such. My private Neurologist prescribed steriods.
i've never seen a rheumatologist.
So thats me now (51y/o) - just starting 30mg of Steroids for 2 weeks.... as of day 5, no change so far.
so i'm not sure if it could be PMR or not - I guess I wait and see for the steroids to work?
any help , or any advice, so very very welcome.
best wishes
tony
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yes - its like i've the muscles just strain straight away - the power is there, but they just feel like they have done something 10x more than they should - then they take an age to recover - feeling worse at around 4am (waking me up) and only getting better as the day goes on.
no muscle wasting as such, just natural i think from not being able to exercise
i read your profile / posts - i feel what your going though - the removal of what one loves to do and that being an outlet for your enjoyment is gone and no one can tell you when you might get it back / if you will. plus the lack of any interest it seems in me from an NHS point of view has been a real real eye opener, a depressing one, when I always thought and spoke so highly of the NHS - but chronic illness doesnt seem to be top of their list it seems.....
feeling worse at around 4am (waking me up) and only getting better as the day goes on.
As you will see from my info post that is typical of PMR…
As for your comments re NHS, my husband spent too much time in and out of hospital between late 1990s and early 2010s.. and we always said the NHS is brilliant at dealing reactivity an emergency, but pretty bad at dealing proactively.. and unfortunately since then it seems to have got worse despite the best efforts of those on the front line.
They saved his life on a number of occasions and I’ll always be extreme lucky grateful for that… and I’ve had 3 very successful elective operations, but as you say they do struggle with chronic conditions..
I'm sorry you are having this uncertainty. If you have no release with pred. then do stop at 2 weeks. You don't want the problems it brings. The good news is that it could be something curable and that allows you to enjoy your sport again. The bad news is that it may take some time and a lot of pressure to get the answers. As we age we need to allow for it and not push as hard as we did when younger. Sadly I didn't allow for this and kept pushing my body as if I were 20. It seemed to work up to 68 and then my world collapsed. As an elite athlete you may have reached a point where you need to recalibrate your regime. Just do enough for a couple of months to keep the muscles healthy without the stress and the pounding from running and see how you feel then. You are young enough to adjust your goals. You have really good advice from PMRpro and DL
Would have expected some improvement on 30mg of Pred.. that’s above the usual recommended starting dose…but 5 days in may not be long enough as it’s been grumbling along for some time.
So give it a bit longer, you have enough for 2 weeks. Hopefully then thing should be clearer..
Could well be long covid, lots of symptoms are very similar … and many things need to ruled out before PMR is diagnosed.. unfortunately there is no simple yes or no test.. as you have discovered.
Maybe have a look at this for a bit more info-and stick with us now you’ve found us - 😊
No response to 30mg after 5 days does sound a bit "Is this really PMR?" I'm afraid.
However, PMR isn't the disease, it is the name given to a set of symptoms that are due to an underlying disorder. In our case, thought to be an autoimmune problem, but there is a range of causes that may result in similar clinical pictures. It is claimed that "our" PMR is characterised by a dramatic and notable response to a moderate dose of corticosteroids - 15-20mg is the usual sort of range but it may take 25 and exceptionally 30mg. But when it takes that much and more than a few days it does raise questions.
When did you have Covid and when did the first symptoms appear?
It had my 3rd booster in Dec 21 then got COVID Jan 22 and thats when i get the severe neck / shoulder back pain and had it ever since - it went pretty low for a while, then came back after i got COVID again around november last year and its been the worst it has ever been since.
I explored the longCOVID myself and got an set of cytokine inflammation markers done privately , a test sort of on the cutting edge, from USA but now done here in the UK - it showed a lot of raised markers but not really in keeping with what the current thinking of longCOVID is - they also advised I should take a course of steroids which pretty much lined up with the private Neuro / Neurophysiologist from my symptoms.
I'll finish out the 2 weeks of Steroids i guess and see ...
I'm assuming for a short dose I dont need to taper at the end if I / they feel its not working for me?
Cytokine markers were being done when I was first diagnosed with PMR 15 years ago because he looked at IL-6, no idea what the result was mind you! He wasn't the sharing kind and I didn't know what I know now!
well here is the breakdown if the results i had - i dont know if the reference ranges are valid( last 2 figures ) but there is IL-6 on there and considered HIGH at 18.86.
LH CYTOKINE 14 PANEL
IL-2 : 4.39 pg/mL HIGH 2.19 - 3.98
IL-4 :78.75 pg/mL HIGH 7.79 - 16.94
IL-6 :18.86 pg/mL HIGH 3.96 - 16.32
IL-8 : 8.86 pg/mL NORMAL 0.67 - 20.74
IL-10 : 23.786 pg/mL HIGH 3.11 - 4.75
IL-13 : 7.596 pg/mL HIGH 0.53 - 3.00
GM-CSF : 3.54 pg/mL HIGH 0.00 - 0.97
SCD40L :15046.3 pg/mL HIGH 7187.49 - 13987.06
CCL3 (MIP-1 ALPHA) :104 pg/mL HIGH 0.00 - 19.63
CCL4 (MIP-1 BETA) :29.229 pg/mL HIGH 7.90 - 19.52
CCL5 (RANTES) :11418.45 pg/mL NORMAL 10112.74 - 11787.04
Yes - but not excessively high and many cytokines have an antiinflammatory role in the body. What jumps out to me is the TNF-alpha but I'm not an immunologist.
as it suggests to me that, as a fairly high level athlete, it may be a response to the Covid infections. But that is a random thought.
However - the raised TNF-alpha may be of more interest than the slightly raised IL-6 which is associated with PMR, TNF-alpha is associated with a range of other chronic inflammatory disorders including a few forms of inflammatory arthritis,
Given the symptoms and bloods, if it were me I would want my doctors to be looking at ruling out ankylosing spondylitis as a start if the pred doesn't achieve much. There are other possible causes of the inflammation but the position of the back pain is suspicious to me.
This site is being nuts today!!! What you are describing sounds a lot more like Long Covid than the PMR cases that have been triggered by Covid. plenty of those too. And no - after 2 weeks you can just stop without any problems though I suspect you might feel it a bit!
Odd that it isn't helping even a little if it is PMR, but I had to go up to 30/35 mg for 6 weeks and even took 40 mg during a trip (and still had pain, bit it was more liveable).
I have a working theory from reading all the posts on here for over a year now, and I know some don't agree, but that the younger one is with PMR, the higher the dose it takes to become fairly pain-free (70% is considered success) and get the inflammation down..and also how long you went before diagnosis, too.
So my personal advice would be to give it the full 2 weeks first. Keep us posted, lots of great people here who know much more than most docs about PMR.
Exception here? I had first symptoms at 51, wasn't diagnosed until I was nearly 57, but 15mg achieved over 70% improvement in under 6 hours. But after 17 years I still had PMR symptoms unless I was on a pretty helfy dose of pred.
Hmmm, all very interesting. I'm a great advocate for early morning dosing especially in the early days. If not doing so already, try taking your Pred at around 2am or a bit earlier if you're a midnight night owl for going to bed. As long as the Pred is well into your system by 4am when the IL6 is released you may find you waken without the morning stiffness. That's the theory and works for me and many others..
WHAT!?!? i had no idea - i was told to take it with breakfast - which for me is 10am!!!! as i said previously i wake at 4am usually with usually some issues in terms of aches , pains and strains
Was mentioned in my intro post - and also in another reply…
Recommended time to take most Pred is early morning, with or after food. However, as the cytokines that trigger the inflammation are produced daily around 4am; some people find that by taking the plain uncoated tablets around 2am or the coated ones or slow-release ones the evening before it is fully in their system by that time, and it is ready to fight the inflammation.
However, not a lot of doctors know that [said in Michael Caine accent].
Plus if dose is sufficient and lasting 24 hours not everybody needs to take at 2am
Don’t usually a have slow release Pred as such in UK [but as it is a world-wide forum have to cover all options] - but some get enteric coated/gastric resistant ones which take longer to be absorbed and working , so they can be taken before bed.
By all means try a change in timings.. as we always say, what suits you is the way to go.
There aren't really slow release tablets. Enteric coated are effectively delayed release as they pass through the stomach before being absorbed maybe 4 hours later than if you are on plain pred, Enteric coated are coloured - 5mg are red, 2,5mg are dark brown. Plain common or garden pred is white usually, occasionally you get pale yellow 2,5mg tablets.
Doctors work on an assumption that cortisol release peaks about 8am and so claim that taking pred about that time mimics the natural release and reduces adverse effects. Which would be fine if it fitted like that - but it doesn't! The peak in the blood is at about 7-8am for most, just after we wake for the day, to prepare us for the day ahead. If you don't take pred until breakfast at 9am, it takes over an hour to get into the system - everything is running late. And in that time the inflammatory substances released at 4-4,30am have had all that time to get to work producing inflammation, there is more to do and it takes longer for the pred to improve matters. And you aren't taking it for another hour.
If you are waking at 4am anyway - take it then. Do you then settle down for a bit longer in bed?
well i'm usually awake a good few hours until around 6.30 when i sleep till 8 - thats on a good day if i can manage the pain etc etc. i have white pills so assume standard then - i've always been a late eater for breakfast....
thankyou all for your comments, advice and most importantly your time out of your day for replying to these questions of mine - its been a real eye opener not only because of such nice people wanting to help, but also in how little i've been told before taking this and what to expect.
The two main blood tests for PMR are CRP (C-reactive protein)and ESR (erythrocyte sedimentation rate). Do you have results for either, at any time over the last 2 years?
You don't say which steroid you are taking. It should be prednisolone or prednisone for PMR, but there are others. 30mg per day by mouth is a large dose of some steroids, but not others.
In any case, the lack of a strong, rapid response to a suitable dose of steroids, if confirmed, pretty much rules out PMR (that's probably the reason for the trial). However, it may take the full 2 weeks to rule out other autoimmune diseases, whether rheumatological or neurological in origin, as these don't always respond as quickly as PMR and sometimes need a bigger dose. Make sure you finish the course.
I wonder what clues resulted in you being referred to a neurologist, but not a rheumatologist? Pain and easy fatigability alone seems too vague to rule out rheumatology, especially when your intensive exercise regime puts such a strain on a body. Perhaps they suspected an injury, like compressed nerves, at first? We all age at a different rate, and wear & tear builds up, especially in the muscles, tendons and joints.
Have you had any other odd symptoms? Any muscle paralysis, either before, during or after exercise? Even a twitchy eye, vision problems, or droopy eyelid?
Have you had your tendon reflexes tested (usually with a little rubber hammer)? Loss of these points towards a neurological cause.
Could the recent "tiny strings of pain" be due to the EMG (electromyography)? It's like being tazered with the voltage turned down! The shocks and needles can sometimes aggravate the nerves until they heal. Which type of EMG have you had: RNS (repetitive nerve stimulation), SFEMG (single fibre EMG) or both?
EMG is a powerful diagnostic tool, especially for severe disorders, but many doctors have too much confidence in the ability of technology to identify every case, regardless of how indistinct the symptoms are. Has your blood been tested for pathogenic antibodies, such as anti-AChR or anti-MuSK? Healthy people should have none, but the NHS seems to treat low concentrations as inconsequential. These antibodies are very strongly suggestive of myasthenia gravis, but EMG does not confirm every case.
Like you, my symptoms strongly suggest PMR. Unlike you, my symptoms came on progressively, worsening drastically in my 50s. Unlike you, I responded within 24 hours to trials of 20mg of steroids (prednisolone) per day. Despite this, I don't have a diagnosis of PMR because no inflammation (the usual cause) can be found. Despite the fact have some anti-AChR antibodies and have lost my tendon reflexes, I can't get a neurological diagnosis because my EMG is normal. It's a nightmare, so I understand your plight. I'm housebound.
I have had all those bloods mentioned and seen 5 neuro's (3 NHS , 2 private) and the last EMG was my 3rd + nerves conductions etc etc (although NHS ones were very short compared to private one which was my 3rd) - its was the Neurophysiologist that suggested PMR - i'm on prednisolone .
no issues with droopy eyes etc, some muscle reduction but its because i've done no exercise in 2 years from when i used to do all my activities - it started with muscle shaking, like they were not getting enough oxygen or blood, then i found the strains and pains too much so i stopped while i was being looked at (didnt know it would be 2 years later without a resolution) , slowly what i could do without pain reduced and reduced , now i cant drive or walk the dog much - if i do , within a few hours i get muscle pain, and overnight its really bad and the legs / hips and shoulders are pretty bad. it takes an age for them to recover. my "power" is there as Neuro's keep telling me , so no real weakness, but as i say if i use it, it hurts!
I dont know why no one has suggested a Rheumo. I've even been seen by Infectious diseases!!! perhaps i should just go private with that - suggestions welcome . i find finding a private consultant a minefield when it comes to someone whos really interested in you and wants to find out whats wrong....
Where are you? If you are in the south our favourite go-to is Rod Hughes in Chertsey who does both NHS and private work. I think this is the correct phone number:
PMRpro has given details of our ‘go to’ Rheumy… but if he’s too far away, suggest you raise a new post stating roughly the area you are happy to travel and ask for names… Not everyone will read a reply in an existing thread, whereas a new post will capture more readers.
Okay, so, as I understand it, your CRP and ESR are normal, you tested negative for anti-AChR and anti-MuSK antibodies, and all your many EMGs have been inconclusive, at best. You haven't had a significant response to 30mg of prednisolone after about a week.
Ask for a hard copy of your anti-AChR and anti-MuSK test results. A healthy person should have no measurable amount of these - titre below 0.05 nmol/L - but, for some reason (possibly old, insensitive testing methods) some labs declare the result as "negative" even though you might have 5x or 10x that quantity! Studies show that the symptoms of MG do not correlate with the titre of antibodies in the patient, but many neurologists behave as if they do.
Like you, I have now lost a lot of muscle through inability to exercise. However, I still have enough "power" in my muscles to get showered and dressed most days. I also pass the strength tests (even though I cannot raise my upper arms more than 90 degrees, unless I take gravity out of the equation by lying on my back, first!) My muscle weakness shows in the fact that even mild activity leaves me out of breath and exhausted. When I try to 'push through it', I get dangerously shaky/wobbly and can end up writhing in agony and bedbound for two days. Like you, I can't drive any more.
Most EMG tests simply don't work the muscle long enough to mimic this kind of debility: one paper I saw said the RNS (repetitive nerve stimulation) should last a horrendous 10 to 15 minutes before assessing whether the muscle has lost condition! Unless one's muscle becomes effectively paralysed within seconds, the EMG will come out normal. A patient with full-blown MG said she could flap her arms like a chicken no more than 3 times before they ceased to work. You and I are not like that.
None of this changes the fact that, though our age and symptoms are similar, I respond rapidly to prednisolone while you don't. Now I know it's 30mg/dy of prednisolone you're on, this pretty much rules out PMR. Other conditions might take longer, so complete the 2 week course.
My suggestions above are meant to extract the last shreds of information from your tests before they gather dust. Hope things turn around. Keep us informed.
so its now 2 weeks on 30mg - beside my mood improving and generally feeling a little better, the pains have not stopped, eased, perhaps a little, but upon doing anything with my back, the pains come back, and indeed new pains too - hips, etc etc.
so i'll carry on now at 20mg for 2 weeks and if no improvement see whats what back with the private neurologist / GP.
And.....
i've now got my NHS Cervical MRI report , its taken months for that, and despite my private cervical MRI showing C5 C6 degeneration and nerve impingement, the NHS one seems to go a few steps further
"Clinical detail: explanation for radicular pain into right
arm and weakness.
back pain, right arm weakness.
neck pain, back pain, progressive right arm weakness.
Technical note: T1, T2 sagittal, GRE, T1 axial.
Findings: There is straightening of cervical spine.
There is subtle retrolisthesis of C5 over C6.
There is right uncovertebral arthropathic change at C5-C6
level causing mild right neural foraminal stenosis.
The cervicomedullary junction and cervical spinal cord are
normal.
There is no spinal canal stenosis.
Impression:
Subtle retrolisthesis of C5 over C6.
Right uncovertebral arthropathic change at C5-C6 level
causing mild right neural foraminal stenosis.
"
Googling some of that above could be the cause of the pains and issues - depends if "subtle" or "mild" is decided to be acted upon by my GP - given how explicit C5/C6 issues and S5/L1 issues my private MRI showed and were waved away by the GP as "aging" i doubt it will come to much. I suspect I might have to go again via a private route to get some sort specialist "look-at" these results to see.
I think you might be correct in your last sentence…
If 30mg has not made that much of a difference, that also casts a doubt over PMR… and of course the hip pain could be associated with the back issues rather than PMR per se…
So, rather than getting a definitive answer, sounds as if more questions raised…
At this stage of having been on 30mg - if your GP is still insisting it is PMR, he needs a reality check! And if it were me - I'd be demanding a second opinion.
I'd suspect your back muscles are in a right state, probably due to the possibly minor displacements in terms of radiography but all that can put strain on the muscles and joints and it can hurt like h&££.
Happy Easter Everyone! - so i'm back again - so i decided to carry on another 2 weeks -well, basically i was TOLD TO as I phoned the GP and they said DO WHAT THE NEUROLOGIST SAID! so now 1 week at 25mg (just gone) and 1 week at 20mg (thats the week i'm in now) -
i've found dropping to 25mg (and indeed at the end of the 2nd week of 30mg as i said above posts) everything has returned to its bad state, and perhaps a little worse, i'm getting bad cramping in calves and muscle pains in my back and feeling a little "shakey/jittery" - i'm supplementing with electrolyte drinks and high potassium foods.
i've also tried a few "4am" takes with a bit of food, and it didnt make a difference to the rest of that day.
So, i'm tempted to just stop all together now - being in the 4th week of the steroids should i reduce gently or should i just stop? conflicting advice on the Internet, some say 2/3 weeks = no real issues, anything further could be....i know what the GP will say......but i think i might go back directly to the neurologist and tell them the situation.....
the rest of the Neurologists plan is to drop every 3 weeks until i get to 10mg where i stay for 4-6 weeks then reducing 1.5mg every 4 -8 weeks or alternate days at 10/7.5. but that seems a very very long time when its clearly not working and the longer i stay on them the worse to come off them -
Once you have been on doses above 7.5mg or thereabouts and we usually say 2 weeks )(but 3 absolute maximum) you cannot just stop Pred -you could trigger an adrenal insufficiency incident.
You can taper off quicker than guidelines, but it won’t be comfortable, and whether it gets you any nearer to a definite diagnosis remains to be see
Between a rock and hard place springs to mind.
As said previously, you need a second opinion from a specialist.
I think it is pretty clear that whatever you have, it is NOT polymyalgia rheumatica but a polymyalgic presentation of something else. It is possible that it COULD be large vessel vasculitis - the calf cramping MIGHT fit that - but whatever it is, it is way beyond the capabilities of a GP to diagnose and manage at this stage.
Theoretically, you can drop straight to 10mg now for a week and then to 5mg and probably off. I was on pred for 6 weeks, 2 weeks each of 15/10/5 and stop. Down to 10mg is easy, it is the last bit that is harder but after only 5 weeks I don't think it will be particularly difficult. You certainly don't need to stay at 10mg for a month, that is still above physiological level and will add to the tapering problem. 5mg is supposed to be below a physiological dose.
thankyou to you both for the quick reply - especially on the bank holidays -
i'll think i'll do 2 birds with one stone, a private rheumy for a second opinion and the fact she/he's a rheumy rather than a neurologist - will look around and make some calls, perhaps a video call will have to do in the first instance to get some advice - it seems the private sector is busy as its ever been - i remember years ago seeing a private back specialist when i had S1 issues within a few days, now even private is running into 3 weeks + .
as for tapering - i'll try a cautious 15/10/5 and see how i go with reactions.
amazingly dropping down from 30 to 25 and 20 i'm sleeping pretty good at 20 - something that wasnt happening at 30 for sure.....and i've had no issues with indigestion either
(The Huddersfield Hospital, Birkby Hall Road, Huddersfield, HD2 2BL)
he consults in GCA and PMR - and amazingly its TOMORROW at 7pm.
i'm hoping i can ask his opinion and questions about my condition, and dosage, perhaps going back to 30 or higher or just not bothering at all. I'm hoping he might be able to sort out some more bloods perhaps via GP for narrowing down anything else it could be....
i'm pretty much back pain and stiffness wise to anytime before i started pred. so i dont think my current dose is do anything for me. its agony!
So a lovely chap to talk to - took in a full history over the past few years , i had sent him over my MRI's and bloods etc etc
basically, given my low response to 30mg and zero effect at 15mg, and my bloods are well within normal, he thought there was no evidence it was PMR and that although the private Neurologist understandably wanted to help with my pains and issues - it clear that its not PMR.
He is, however going to pull all my NHS records before recommending anything and said to stay on the 15mg for the rest of this week, but will probably recommend to me to taper quickly off, but he will be in touch.
He has been seeing a lot of Long COVID diagnosis, and he was also curious about the gap between me getting these symptoms, and my last vaccine (it was 6 weeks - but i thought i'd had COVID as well just before it all started)
He mentioned it could be a lot of things but really sounded like muscle inflammation i looked up something called "myositis" , which i dont like the look of....
It was only supposed to be a 15min call, but he spent 35mins with me.
very very considerate about my situation.
i'll wait until he gets back in touch
once again - this forum has been a great help thankyou too all who read and replied.
for the last 3 days i've had a terrible pain in the temples and the eyes - sometimes feeling like it was pulsing or flickering ! - is this tapering down 5mg a week, this would be end of my 4th week i think (30/30/20/15/10/5) , or could it be i have GCA symptoms - thing is i never knew about GCA until researching PMR symptoms and would have put this down to just a headache, however i very very rarely get temple headaches, they are almost always back of the head type ones.
i took some paracetamol and it didnt really do much. Today i feel better but there is still slight pains in both temples.
I've done a search to see if there is any difference between withdrawal and gca symptoms but there's so much out there and on here its tricky....
I know you were started on 30mg which did little for you then to 20mg and then reduced because of undecided diagnosis …but if paracetamol is not helping temple pain at all then GCA certainly has to be considered…. You need seek medical attention from consultant you spoke to last week.
Re - withdrawal symptoms v flare- simple explanation here - but not everyone is exactly the same -
I would be inclined to contact the guy you saw last week. Because while your history makes it fairly likely it isn't "just" PMR - it COULD be GCA and he needs to know about the change in symptoms.
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shoulder pain PMR or costocondritis?
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Recently Diagnosed PMR
