Polymyalgia Rheumatica

Sorry you're having pain and GPs unable to diagnose can give extra worry.

My own experience of Polymyalgia had classic symptoms of shoulder/ neck pain making it extremely difficult to get out of bed on mornings with the pain and stiffness. I couldn't lift my arms up to head level . GP confirmed Polymyalgia with a blood test which shows high inflammatory markers. NICE guidlines are 15 mg starting dose of Prenisolone which is tapered down gradually .
Patients usually feel better within days.
I was lucky to be off the steroids in 10mths.
DH started with Polymyalgia last Yr with same symptoms plus bilateral hip pain. Couldn't lift arms up either and really difficult to put arms into sleeves ( a common thing). He was put on steroids but needed to go up to 20mg as 15 didn't work. His neck/arm pain went within days of higher dose.
His blood tests were normal though.

Not sure if you've had inflammatory markers in blood checked.

I would suggest you go back to GP and ask for B tests if not.

I do understand your concern about taking steroids , I really do, though having Polymyalgia should be treated properly , if that's what you have.
Hope others with Polymyalgia will can come on and help too.
Best wishes for your pain relief whatever it turns out to be.

Your GPs seem to be rightly cautious about the diagnosis of PMR if you read the literature I have read that prescribing steroids can mask other conditions.
In my case in 2020 my hips both had severe OA and I was prescribed Naproxen. Bits of me swelled up and the pain was worse than previously
GP suggested PMR. And prescribed prednisone. As symptoms did not fit the diagnosis so did not take them and came off everything.
GP prescribed a very specific NSAID which worked for first dose possibly the second but third dose not good
What I am trying to say is have you been taking NSAID. For some ache and possibly they do not agree with you
When taken into hospital with chest pain told it was mild angina and discharged
GP sent me back in
Anti inflammatory markers sky high and told I had vasculitis. Which turned out to be isolated aortitis which dissected
According to one research paper 10% of such cases NSAIDs were implicated
So it looks as if some people are adversely affected
I obviously can not say about you but think about it
However people react differently to steroids for PMR my sister in law thought they were fantastic and felt like a dinamo on speed A friend really found them horrendous. I was on a much higher dose for the vasculitis and I won’t bore you with my experience
All things considered I hope you get sorted out and your GP sounds good

Thank you so much for replies. I’m very grateful to you for sharing this info that is so useful and gives me so much to consider.

I was diagnosed incorrectly about 6 years ago with PMR and did not respond to steroids for about 7 weeks. I was put on steroids for about 4 years! I was seeing another consultant about my thyroid and for some reason he booked me in with the rheumatologist. She checked me over and announced ‘You have never had PMR’. This was a shock so she took me off the steroids asap. I asked what illness I had had she asked if I had any virus type illness in recent years and I said YES, she said this could have triggered all the pains in my legs arms etc and I didn’t respond to the steroids as I did not have PMR. She did say that steroids are 10 times stronger than normal painkillers so that is why I felt a bit better after 7 weeks.

Have you had a nasty virus in recent months? Worth considering.

I had a similar experience about 15 years ago. Out of the blue I suddenly couldn’t climb the stairs, terribly weak with widespread pain. I had blood tests which indicated polymyalgia, but the treatment was steroids. I have had a possible allergic reaction to a steroid in the past, so the treatment was to start in hospital under supervision. However, the hospital consultant was dubious about the diagnosis, and I had a test of some sort over several hours, which showed I wasn’t suffering from the condition after all. It was believed to be some sort of virus instead, and after a while the symptoms disappeared for good, to my great relief, as I was dreading being treated with steroids.

So it seems that other conditions can give a positive test result for polymyalgia.

I started with aches and pains earlier this year and then developed an awful headache.
I was diagnosed with PMR but also a linked condition of giant cell (temporal) arteritis.
40mg of Prednisolone (steroids) took the headache and all other aches and pains away almost immediately.
I've now tapered down to 20 mg and am struggling with the PMR pains returning.

The diagnosis for this condition does seem to be a minefield. I don’t seem to have suffered from a virus in the recent past unless I’d maybe had asymptomatic Covid but I notice trauma is thought be another possible cause and I have recently had quite extensive dental surgery.

I've had quite an indepth conversation this morning, with someone who,out of the blue, got Pmr a year ago.

She has been treated very successfully with steroids, and has nearly finished tapering off them.

I was told that I have an Epiretinal membrane growing over my left retina. Has anybody else been diagnosed with this? I already have cataracts growing, so a little concerned!

Brother has been on Prednisolone for 6 years, but has managed to taper down to a tiny dose. He felt the benefit of Prednisolone within 12 hours of first dose, and this pretty much confirmed the diagnosis before test results. He watches his diet and keeps mobile. PMR is a systemic inflammatory disease - not just joints! If confirmed, steroids may be necessary for a while, not just to ease pain.

Following Covid my friend of 85, formerly very fit, developed terrible pains in legs and shoulders particularly and was severely fatigued. Had various tests and X-rays then a blood test revealed high inflammatory problems. He started on a course of steroids at 10mg a day to decrease by a 1mg each 4 weeks. So much better now - and down to 8mg.

I was diagnosed with PMT way back in 2001 and was put on 30mg Steroids(Prednisolone), I worked immediately. I had no markers, but some people do not. After 6 months the GP started to taper me down, but the pain came back immediately. In the end I took the steroids for 8 years. I was sent to a specialist at the hospital for back problems who decided I never did have Poly but arthritis and a scoliosis so severe it was given me all the pain everywhere. She gradually got me off the steroids over the next 2 years, but I have been in pain ever since and now take morphine and strong prescribed cocodimol instead.
The side effect of the Steroids is still there, extremely thin skin, that bruises by the touch and at the time I bloated to twice my size. I have flares now and again, but would never go back on the steroids, they are magic pills that mask the pain, but do not cure and you end up not being able to function without them. Morphine of course works similarly but I can't function without something, at least I don't bloat now.

with Polymyalgia don't know where PMT came from should have been PMR

In reply meddijess
I had a epiretinal membrane for several years, with a gradual deterioration in vision before referral by my local optician to the opthalmologist clinic.
I was initially very anxious regarding surgery but It was successfully treated.
Improvement in my vision was gradual, as explained by consultant, over several months and I now have excellent vision in the eye.
I hope this is helpful

My daughter has a chronic autoimmune disease, which manifest in all sorts of different ways. Early on in her diagnosis she was left on steroids for a year. At the end of that she had chronic steroid acne, her weight had doubled and she had osteoporosis. She has since been told that if steroids don’t start to work quite quickly to resolve symptoms, they are mostly not going to work and should be discontinued. She does take short doses sometimes for specific symptoms, and sometimes they definitely do work. I have a friend who FM was resolved with steroid treatment and has never returned. I am pleased that your GPs are cautious about their use. My friend’s FM pain was constant, but worse in the mornings when she had the stiffness, joint and muscle aches that others here have described.

PS I just looked up the Bowen technique, which looks interesting and gentle. I don’t see any reason why you shouldn’t try this alongside support from your GPs. If it gives some relief from your painful symptoms it must be worth trying?

I have had PMR for 7years.Started on 25mgms prednisolone. Went from being bed bound to skipping upstairs in 6 hours.
Tapering has to be as slow as possible. Im now down to 3mgms and doing fine. Good luck

Meant to say...dramatic response , as I had , is diagnostic for PMR.
My inflammatory markers were up a little but for many people they don't react so blood tests not always conclusive