After weeks of frantic googling, I have stumbled upon this group and it's honestly the first time things have started to make a little sense...
I'm looking for some advice for my mum- she has been in horrendous pain since mid January and is really struggling. Her symptoms are like a checklist for PMR, direct from the NHS website and further afield.
She is 74 in a couple of weeks and has intense pain in both shoulders, legs, hands swollen, fatigue, can't get out of bed in the morning, or even the chair if she sits too long. It's come out of nowhere for someone who used to spend most days in the garden or walking.
PMR was initially mentioned by her GP and she was put on 5mg of Pred, this lasted for a month and had no effect.
She is an incredibly stoic woman so when she called my sister in tears last month we knew she was truly struggling.
After calling her GP surgery and explaining that I was driving the 3 hours home to take her to A and E (and lightly inferring that this is not a favourable look on the practice), they agreed to a home visit.
The key bit of info here is that prior to the GP visit on the Monday, they increased her Pred to 15mg on the Friday and by the time I got home on the Friday evening I actually felt like she'd hammed it up so I'd go home for a few days (I jest)....but from being in tears with the pain, she spent Saturday in the garden on her knees chopping up branches....basically a miracle.
The GP arrived on the Monday and swiftly took her off the pred (cold turkey by the way) saying that if it was PMR then the 5mg she'd been on for a month would have solved it.
She diagnosed a Frozen Shoulder and carpal tunnel.
She is now on Naproxen and has recently been given a stronger Cocodamol. These stem the pain very slightly but certainly not to the point where she can do anything she enjoys, gardening, a bath, walk etc.
We obviously have no diagnosis but I am convinced it's PMR.
I suppose my question is....is a month of taking 5mg of prednisolone enough to 'knock out' the pain if it is PMR, like her GP suggested?
And also, is there any way of speeding up a diagnosis?
She had a chest x-ray on Saturday, ultrasounds for the liver, gall bladder is due Monday and more bloods before being referred to a diagnostic centre.
I've read a number of posts suggesting asking for a trial of 15-20mg of pred as it sounds like this would give us clear proof...
Her initial bloods showed increased white blood cells and high platelets count, but we're not sure why on this and have been offered no answers thus far from docs.
Any help would be hugely appreciated...
Written by
RayDog
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No, emphatically, 5 mg isn't enough for anyone to cure PMR. First off, PMR cannot be cured. It can only be controlled until it decides to go into remission. The right dose of pred gives medication-induced remission, which is why we find it such a miracle. The very lowest dose I've ever read here a person started with was 10 mg, and this is still not within the guidelines. Your doctor must have misread the recommended 15. One should receive at least 15 mg for at least a month, many would say as much as 25 mg for up to 6 weeks. patients will vary in their response. If it is PMR they will get at least 70 % relief of symptoms, and many get as much as 100%. After five or six weeks a slow taper is begun to find the lowest possible dose which still relieves the symptoms. The taper can take a couple of years. People are very often on pred for more than two years and stay on a low, relatively harmless but still effective, dose for longer. Less than two years duration is more rare. Certainly one month at 5 mg sounds like the doctor was treating a completely different disease.
Thanks for the quick reply HeronNS- I definitely agree that I think she was given the 5mg for a different reason other than PMR, it was almost like the GP was afraid to mention PMR at all.
You have confirmed my thoughts that the dose was not nearly enough to effectively help to diagnose PMR so thank you.
The prognosis you describe would certainly bring a considerable amount of light to my mum's situation, although having seen her pain first hand, I fully appreciate the torment this condition brings.
There will be others along with more detailed and informed comments, so please stay tuned! Your mother is so fortunate to have someone concerned about her welfare.
Obviously the doctor should examine the results achieved when she was receiving 15 and change his diagnosis, certainly sounds like PMR and has he done the ESR testing for inflammation
First advice - would be ditch the GP and find one that knows something about PMR because the current one obviously doesn’t!
5mg as a starting dose is no good to man nor beast......or woman for that matter....however the 15mg is, and was!
And as for stopping 15mg Pred cold turkey.....words fail me - apart from GP needs reporting!
Been down the frozen shoulder route personally - and again, wrong diagnosis.
Hopefully the further tests she’s having will highlight the correct diagnosis- which as you rightly say sounds suspiciously like PMR.
As the saying goes - ‘if it walks like a duck, quacks like a duck,...then if’s a duck’
Only way to speed up diagnosis is a private appointment with a Rheumatologist - if you tell us what town is nearest, sure someone will give you a name.
You might like to have a read through this for a bit more back ground -
Thank you DorsetLady- I read your synopsis before writing my post which confirmed to me that I was approaching a group who knew what they were talking about!
She was due an appointment for the frozen shoulder today but I had to cancel it as she was in far too much pain to attend on her own- although as you say, it's not the right diagnosis anyway.
I think the pain killers are acting as some sort of placebo.
Do you think the chest x-ray, bloods and ultrasound on the liver and gall bladder will lead to a diagnosis- is it a case of ruling out other sinister things before eventually 'falling' on PMR?
I also read taking pred can lead to a high platelets count which could be an explanation for that.
Well if they rule out other diseases, which often needs to happen it’s a start. The painkillers may take the edge off the pain temporarily - but not long term....and won’t control the inflammation sufficiently, which is likely to lead to other issues.
OK thanks- this is all very encouraging and is confirming our suspicions. That's not to downplay this, I understand it will be a long road...it will just be nice to have it confirmed and then we can start treating it.
Try this. Sounds like the GP needs to read something occasionally. There are other papers to read and they might turn up in further replies. rheumatology.org/Portals/0/...
You need a doctor who has the slightest idea what they are talking about. The starting dose for PMR is 15mg - not 5mg which you MIGHT, if you are lucky, get down to after about 18 months. You don't need a trial of pred - the 2 days did that, relief in hours and return of pain in hours is characteristic of many cases of PMR. PMR is a chronic disorder that lasts at least 2 years - 5mg of pred wouldn't do much for anything and a month in PMR is nothing,
It isn't uncommon for frozen shoulder and carpal tunnel to be diagnosed when it is really PMR - since both can be found as part of PMR. However, neither cause the all-over pain. NSAIDs (Naproxen) and other pain killers do little in PMR, they aren't anti-inflammatory enough. It never ceases to amaze me they have no fear of using them but a moderate dose of pred scares them witless.
Hum. Is there ANY chance of seeing a better informed GP? If not I would write to the senior partner outlining what has happened thus far, including her response to 15mg (was that given by A&E?) and what happened when the GP did the house visit. Reminding them again it isn't a good look for the practice when their staff don't know the basics about one of the most common presentation in over 65s. I don't mind the not knowing - I do mind not looking it up.
The first link is a basic presentation of PMR, the second is the latest international recommendations - which includes dosing. The other two are about a study showing real duration of management with pred. The link to the original is at the bottom of the article. Include the links when you write to them.
PS - stopping the 15mg cold turkey was fine - she hasn't been at high enough a dose before for it to make any difference (in every sense) and a couple of days of 15mg and stop is OK.
That isn't really high enough to have a great effect on adrenal function. I was on pred for 6 weeks, 2 weeks each of 15, 10 and 5 and stop. No problem at all. The GP needs a reality check though.
That is what happens - some experts take it as a confirmation of the diagnosis. It isn't really but it is a very solid basis.
The ongoing autoimmune disorder means inflammation is created every day in the early morning, taking pred mops up all that inflammation for that day and you feel "fine" once it kicks in. The antiinflammatory effect of pred lasts 12-36 hours depending on the person and then it is gone until the next dose. No dose - no relief.
Leeds is generally good but the good ones don't do private work. The one I recognise the name of who is listed as doing private I wouldn't recommend (Pease). Do put up a post asking for recommendations and don't rule out travelling.
Michael Plant at Middlesborough used to be pretty good - did a lot with the local PMRGCA support group there which was one of the early ones in England. Bupa lists him.
A GP who claims your mother is a "mystery" when presenting with fairly typical PMR symptoms and a classic response to 15mg pred needs some retraining.
Michael Plant is my Rheumie.. Dx 2 yrs ago, he is excellent and I have appointments every 6 months with him. He even offered to do my Covid vaccination 3 wks ago on telephone consultation if I didn’t get my appointment through, as he thought it was rather late. Apparently North Yorkshire suffered a vaccine shortage for a while.
Thanks for the detailed reply PMRpro- very interesting that Frozen Shoulder and Carp T are common...
I will read through the links you've attached with interest. I think we will try and contact the surgery again in the first instance- they did mention a referral to the rheumy but that was before she was referred to the diagnostic centre.
The GP told her she's 'a mystery' so has sent her to this diagnostic centre as they basically have no clue what's wrong with her.
Obviously these referrals turn into drawn out affairs, all the while the pain is a constant.
Hello, RayDog. Great advice given and I just want to say I'm so sorry your mother has had to put up with all this. Before diagnosis and starting a correct starting dose of Pred the symptoms can be horrendous and it's clear she is suffering. She has my utmost sympathy and it must be awful for you to see her in pain. Thank heaven she has your support.
Hi,I was 74 when diagnosed, and was lucky that my GP's mother had pmr, so she knew exactly what she was looking for when I turned up, and said "I am falling apart", with almost identical symptoms as you describe.
You've already had excellent advice, from people who guided me through my early days with pmr. I would add just one thing, which you may be aware of anyway. Assuming your Mum does get onto a proper dose of prednisolone, and gets the miracle of not feeling the pain, then don't let her go mad in the garden or doing other chores , even though she might want to.
With pmr, you need to give yourself plenty of tlc, and rest. If one does try to do too much, the pmr tends to come back and bite you.
I really do hope you are able to resolve these issues very soon; the pain from pmr is absolutely miserable.
When your mother does get the correct dose as before she will think it’s miraculous but the worst thing she can do is think she’s back to normal, rest and slowing down is imperative, PMR cannot be rushed .
I’m so sorry your poor mother has had such a terrible time of it , poor lady ! I just wanted to add that everyone’s experience is different and I am one who finds some relief with pain killers ( tramadol and paracetamol in the day and amitriptyline at night ) so they might help your mother too. They’re definitely not a placebo for me .Also I was offered an operation for carpel tunnel in both hands and spent a fortune on physio for a frozen shoulder ( by someone who had successfully treated me for a frozen shoulder 10 years ago ) . Those symptoms disappeared when I started the correct level of prednisone, which for me happened to be 30 gm daily. As everyone says , some people get sufficient pain relief with 15 mg but others need more to start with .
I’m so glad you’ve found this website - you and your mother will receive a lot of support and advice . PMR pro, Dorset Lady , Heron and Snazzy are all experts ! Good luck and welcome to this wonderful group .
Hello RayDog, you are so blessed to have found this forum, now you will both be looked after properly at last. After a year and half of agony, being processed through the sceptic maze that is Circle MSK , being prescribed Gabapentin and Mindfulness courses, until I was literally crippled with pain, I paid £250 out of my pension savings, went private, got diagnosed with PMR, prescribed with Prednisalone, and had the miracle cure the next day, dancing in bare feet on the lawn and got my life back! PMR will burn itself out, but it is a marathon not a sprint. Your dear Mother will need to keep a diary of PMR symptoms, Rheumatologist, appointments etc, and a seperate diary for the monster that is Prednisalone. Sorry to tell you, but the sideaffects are multifarious and many facited, and it can become confustng as to new symptoms being PMR or Pred provoked. You also need to read up on PMR's Sister disease GCA, just so you are armed in the event of that rearing its ugly head.
Good luck on this bumpy path RayDog, this forum will keep you both heading in the right direction to recovery. Very best wishes for a 'slow mo ' permentant recovery, Polly.
I just want to reinforce the advice you've had from others. And to say I also sympathise with you trying to help your mother from a distance. It isn't easy but you've found a great forum here.
Oh my word. The naproxen and cocodamol is exactly what they gave me .
Your mum's response certainly shows that she has a steroid responsive issue here and 5mg was certainly NOT enough if she has PMR and the length of time is irrelevant.
I really think you need a second opinion and you are going to have to advocate for your mum here.
I took Simvistatin (for high cholesterol) for three years (63-65yo) and was diagnosed with Rotator Cuff (cold shoulder) and Carpal Tunnel by different doctors, all three recommending surgery. Also hip surgery was suggested. After finding out that statins might be the cause, I quit, cold turkey. Everything miraculously mended themselves within a month
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At age 71, (5 yrs later) I had all the symptoms (neck, shoulders, wrists, hands, hips) hit all at once. PMR was diagnosed by a Rheumatologist who knew something. Started on 15mg for 6 weeks, 12.5mg for a month, 10mg for a month. Then reduce by 1mg every 30 days. It does work. But starting at 5mg is ridiculous.
That said, I would first check with your mom to make sure she isn’t on statins. If she is, I would recommend she stop immediately. Good luck getting your ignorant GP to agree, however.
I stopped my statins early days after beginning on them for long time thinking my sudden pains were due to them- (after ruling out overly vigorous gardening) - however they weren’t! But it’s always worth checking.
Went back on the during Pred years- but came off again - and a couple of years ago GP wanted me to go back on - this time they made me feel awful - so medical record now say - NO STATINS.
Moral of the story - what medication was once’s okay, isn’t always.
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