This looks like a brilliant, knowledgeable community and I'm glad to have found it! I'm in the process of trying to help my poor mum, who has been in agony for the last 6 weeks, to get some help and make sure we're going down the right route and asking the right questions - hoping some of you can share your experiences and hopefully guide me a little.
Mum (female, 74 years old) has had walking and balance issues for a few years but has been just about coping (and stubbornly refusing to be seen to) until about mid-August, when she found she was in so much pain she couldn't really leave the house.
We went to the GP and they have ordered tonnes of blood tests, which have come back with high markers for inflammation (e.g. ESR) and a hip x-ray which showed "mild signs or arthritis" (appreciate this isn't necessarily relevant to PMR!)
Suspecting PMR, the GP started her on 15mg Prednisolone per day which she took for 7 days. Although we (her family) saw some signs of improvement in terms of brightness, she herself felt there wasn't much improvement and said as much to the GP, who decided that, given the lack of obvious improvement, it wasn't PMR.
At a bit of a loss, a couple of weeks later I took her to a private GP. Mainly because one of the other tests our GP had ordered currently has a waiting time of 105 weeks! This was an echocardiogram as they're also concerned about her heart function. That's obviously a concern but my main focus right now is helping her with this pain as it's having a significant impact on both her mental and physical health.
The private GP suggested that 15mg of Prednisolone was not enough as a trial to see improvement, and he would recommend 60mg per day for her. He's kindly offered to speak with our local GP to share his thoughts (his NHS surgery isn't far away from ours so they are in contact) and hopefully if they agree, they'll issue the prescription.
Personally I felt she hadn't been given long enough on the Prednisolone - although she still felt fairly miserable, we definitely saw an improvement. I did mention that to the GP, but understandably they prioritise patient's feedback over family members.
I'm curious and hoping for feedback on what a typical initial dose of Prednisolone for PMR would be? From reading, it sounds like our main GP was prescribing in the recommended dose, but our private GP is recommending 4x that... is that usual?
For me, I'd much rather try the higher dose - I know there are issues with osteoperosis and other associated problems, but the lack of sleep, absolute agony and weight loss (she's small to begin with - gone from 47.5kg at the beginning of the year to <43kg now) seem to be a greater danger to her health than the possible side effects.
If anyone has any experience to share it would be massively appreciated, thank you in advance!
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lk1980
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I have been diagnosed with PMR and my starting dose of Prednisolone was 20mg. I saw a dramatic improvement in my symptoms within a few days. Your mother might have needed a higher starting dose as 15mg is on the lower end of the spectrum for PMR, but 60mg seems very high; it is the dose commonly used for GCA. The prevailing view seems to be that, whilst the Pred can have a dramatic effect within days, for some people it takes a couple of weeks for them to feel the benefit.
If PMR is suspected the recommended dose is between 12.5mg and 25mg. Anything over that could muddy the waters as the steroids may be helping something else. The fact your mother has high inflammation markers could indicate PMR. Unfortunately there is no iron clad diagnosis for it, but a matter of trial and error. In the case of most people you get a magical reaction to the steroids pretty quickly, in my case within 24 hours, although that is not true for everyone. Does your mother have bilateral pain in her shoulders and/or hips? If your mother does not finally get at least 70% improvement in the pain, her doctor should look for other possibilities.
that makes a lot of sense from what I know. Her pain really does seem concentrated along her right hip, and she hasn’t complained of shoulder pain so that’s what’s giving me pause but I understand it can sometimes present without all of the typical symptoms?
That’s what’s making me wary. She’s had two hip x-rays in a month - no signs of fracture, just “age related wear and tear” with some mild and expected arthritis according to the report.
We’re at a bit of a loss at this stage to be honest. She is in absolute agony and can’t walk / leave the house, but there’s nothing obvious on the mechanical front. This sounds like it ticks the boxes, except bilateral.
I suppose how bad is the wear and tear? That can be very painful if gone too far. From what you say it does not sound like PMR as it is not bilateral. I suppose it could be things like bursitis or sciatica which can also be painful too. She could try the one legged test and try and stand on her bad leg for a minute. She can hang on to some sort of support to do this.
Maybe have a look through this for more info….. but would say, as have others, that 7days at 15mg may not have been quite long enough or high enough to give a good result.
It is for some but not all, depends how much built up inflammation there was to clear (link explains more). But 60mg is much too high for PMR, that’s a “GCA with sight issues” dose, and will mask virtually every pain…which is good in some ways but not for an accurate diagnosis.
thank you for this! I had a read of that and it’s given me a better understanding.
When you say PMA with sight issues, it makes me wonder - mum has had declining sight over the last few years along with her mobility… could that be linked to this?
Definitely agree about not going too high and masking other potential issues, I’ll make sure to mention that to the doc when we speak.
Thanks again, I’ll update when we hopefully have a diagnosis!
Sight issues are not usually associated with PMR, but cranial GCA (referred to GCA or TA) which affects the arteries in the head.
I doubt if her declining sight is related to that, it’s usual a sudden occurrence and accompanied by violent headaches. In her case sounds more like age related -has she been checked for cataracts, glaucoma or macular degeneration?
They are both of them obviously NOT very good at PMR! Both need to do some reading in their CPD (continuing professional development).
The 2015 Recommendations say the starting dose should be the lowest effective dose in the range 12.5-25mg/day. Although some say size matters - i.e. a small person needs less - that is not necessarily the case, 15mg is a typical starting dose bit it often takes longer than a week or more than 15mg to achieve the expected dramatic improvement they seem to think always happens.
60mg is the starting dose for GCA with visual symptoms - you absolutely WOULDN'T use that for "just" PMR although it would definitely achieve a result! The trouble is, if you use those very high doses, it masks the quite typical response seen in PMR - speedy and dramatic improvement to a moderate dose of pred.
If you are worried about sleep problems - they will be there at 60mg pred! And 60mg for someone that small is a LOT.
This may help a bit - it is aimed at GPs from an expert team, the author is now a Professor, consultant specialising in GCA at Luton and still using her taper approach. They start at 15 - but also say it must be adjusted for the individual patient - as do all the tapering approaches mentioned in the medical literature but all too often, poor doctors ignore them and plough on regardless whatever the outcome.
Where are you? You have paid for a private GP - is a private rheumy consultation an option? One is usually enough but that might be the way to go in the face of 2 wildly diverging GP opinions, neither of which is sound.
Thanks for this! Yeah, two wildly varying opinions is definitely concerning. This gives me some backing to the conversation I’m going to have, appreciate it.
I think for rheumatologist we’ll likely have to go private - NHS waiting lists are insane here (Glasgow) - but we’re happy to find anything that helps her.
It seems like I should be arguing for a slightly higher dose (e.g. 25mg) to hopefully deal with the pain in the meantime, and get a private appt with a rheumatologist for ongoing care…
If you can get some sense out of your NHS GP in terms of his starting dose being a bit low for YOU, you can probably get away with the cheap option for the moment. Once those symptoms are under control with a bit more pred you can get guidance on how to best taper the dose here,
You know there is a very good charity in Scotland? It predates this one by some years and really was a foundation stone for the English ones. You don't have as much choice as English contributors unfortunately and I don't know much about rheumies in Glasgow - they will.
Just a mention also that you said she seemed better to you when taking the pred. Prednisone can make one feel much more energetic than normal....like before taking it you didn't feel like doing anything and once on it you feel like you can do everything. So, your perception of "better" may have been from her being boosted by the medication, but it wasn't enough to address her pain. Just a thought.
That’s an absolutely fair point and one I had read about but didn’t consider!
She’s not brilliant at describing her pain (where it is / what level it is) so it’s really hard to objectively understand what’s going on. A tricky situation all round, but that’s a really valid point, thank you for highlighting!
starting on 25mg for 3-4 days might have been more helpful, then drop down to 15mgs, but her symptoms were not explained enough for me, the pain was it in her shoulders and arms, knees neck, did she loose power to her hands and arms? She needs to see a qualified Rheumatologist to be properly diagnosed a regular GP can’t do this!
sorry, to address your questions: no power loss to hands and arms, and not much in the way of shoulder pain. It really is concentrated in her right hip round to lower back and into her leg.
I would have suspected a hip fracture but x-ray is all clear (apart from age-related wear and tear) and her inflammatory markers have gone sky high since they were last checked in January. That’s what’s leading the doctor to this, but I think a rheumatologist is the best next step to zero in…
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Just been diagnosed with GCA - some help please
Newly diagnosed
New PMR diagnosed today.
Newly diagnosed 
Help on clarification, please.
