Fit as a fiddle until I wasn't. Enough pain to wake and scream in the night, no mobility in the right arm, hips and knees feeling disconnected, maximum sleep 2.5 hours a night before Ibuprofen or paracetomol wore off, 6 weeks later taken to the GP by adult daughter to explain I was at the end of my tether with pain and lack of sleep. Bloods taken marker readings CRP51, ERP49 and anaemia. Put on prednisolone, see the consultant rheumatologist week after next. Pain moves around the shoulder socket, clavicle, right side of the next and both wrists - OMG both wrists hurt like I dont know what. Currently hips and knees, improved, but occasional pain still. So it seems we're on a journey. Looking for information, help, tips medical and otherwise from those here who have this t shirt too!
Bigglesundone - GP diagnosis of PMR with referral... - PMRGCAuk
Bigglesundone - GP diagnosis of PMR with referral to Consultant Rheumatologist
Gosh, weren’t you already on Prednisalone? It sounds like you desperately needed it. I only knew that pain at the very beginning prior to diagnosis.
please fill out your bio with the history of your illness and timings, giving as much detail as you can. The replies will be more relevant to you then.
Hello and welcome. Sounds like you need a t-shirt unfortunately and a large suitcase for all the patience needed for this journey. Luckily you’ve got us lot now. What dose are you on and how long have you been on that? Doesn’t sound like very long. Presumably you’re UK?
15mg prednisolone daily, now into week 2.
You should expect at least 70% relief of symptoms and many of us do much better than that. If you continue to have pain which is more than a minor annoyance, then you probably need a somewhat higher dose for a few weeks. It is important not to go too high as response to low dose pred is one of the diagnostic tools - a lot of conditions respond to higher dosage.
It's also important not to taper too soon nor too fast, but try always to maintain at least the initial level of symptom control (or better in your case 
)
If you want to change the title of this post as PMRpro suggested, click on the little arrow labelled More below your post and you'll find an edit option.
Yes UK. Ibuprofen, paracetomol, cocodomol and Amotriptolene - non of which made much of any difference . Currently on 15mg of prednisolone. Working on this from scratch as a non medic, my conclusion is like yours, the dose is going to have to go up, but that's a discussion with the GP/Consultant
"Ibuprofen, paracetomol, cocodomol and Amotriptolene - non of which made much of any difference " - all adds substance to the diagnosis of PMR because the only thing that helps the pain and stiffness is pred. Unfortunately, years ago NSAIDs (ibuprofen and stuff) were recommended as first line approach before trying pred but more recent guidelines specifically say NOT to use them. They do nothing and the risks are high. Even opiod painkillers do nothing for the pain.
Hi and welcome.
You will get all the information you want here - but you will have to provide more information for US to help YOU!
What is your starting dose of pred and when did you start taking it? What pain improved and how fast? I assume you are in the UK since you say prednisolone? It helps us to know which country - because the NHS differs from country to country even there never mind other ones! And your age is also helpful. It all helps us to make sensible and relevant comments.
And please - when you put up a post, if the title is indicating what your question is - you should get some relevant posts to read while you are waiting for us so please don't just put your name - the site will tell us that.
Hello and welcome 🙂
Hi and welcome,
Sounds as if 15mg isn’t quite enough. It the usual starting dose, but it doesn’t cut it for everyone, so you may require more. And 2 weeks isn’t always long enough to have a brilliant result.. despite what GP may have indicated.
At the beginning the Pred is working on 2 fronts -
a Getting the built up inflammation [pre diagnosis] under control , and
b. Dealing with the daily shed of new inflammation
Link gives more info as well as a better idea of what lies ahead -
healthunlocked.com/pmrgcauk...
As others have said, we need a bit more info - for example are you still working…
Yes still working, not getting good night's sleep, had one night of 5 hours a week ago but other wise at best 2.5 hr stints for weeks now. Thanks for the shortened version of what the drugs are doing, that's helpful. I think its back to the GP to ask whether a higher dose is required. On a simplistic level, being 6' 2" and 16st now, size and volume wise I'd suggest, as a non medic, the dose needs adjusting compared to typical sized individual
Unfortunately many who are still working do find it more difficult to get disease under control because they cannot factor in the resting and pacing that is necessary with any autoimmune illness.
The suggested starting dose is the minimum effective dose between 12.5 and 25mg… so GP does have leeway if the 15mg isn’t working.
Maybe also mention lack of sleep, and although once pain is controlled it should improve, you’ll may well find that the Pred itself causes insomnia.
As you are still working, you also need to discuss with your employers - they are obliged to make certain provisions to help you in the workplace - unless you are self employed - and then that’s you!😳
Good luck, keep us informed… and undoubtedly you will need more advice as time goes on 😊
I think some would agree about needing more prednisolone if you are 6ft 2 and 16 stone. However, even for those of us who are smaller and lighter, a higher dose can be needed. I was 5ft 8 and 12 stone, and definitely needed more than 15mg at the start to clear out all the built up inflammation. I think the guideline for starting dose is between 12.5mg and 25mg, and, in my experience, staying there for at least four weeks.
Good luck.
Quite right - the study that suggested that a lower starting dose would also work - albeit in a month rather than a week! - did also say that the results were better in small women than large men. So although sometimes 15mg is enough, it isn't always. But most GPs know the bare bones of the recommendations without stopping to consider how one low dose can always be adequate.
Hi, when you say 'getting the built up inflammation under control', how do you know when you have achieved this. Sorry is this is a daft question.
It’s not a daft question…Bit more of how long is a piece of string question…😊
Usually it’s when your inflammatory markers [assuming they were raised, not everybody’s are] have returned to a more normal level, and you find you can reduce the dose to the daily level of Pred you require without causing a flare.
As always, you can’t say it will take a day, a week or even a month…although some of us who have been around the forum for a while always say a month at the initial starting dose is a good indication.
In the days of yore, it was suggested 6 weeks at starting dose, but then it was decided that was too long [and it may well have been for some] and now 3 weeks seem to be the normal recommendation. Which isn’t always enough!
The support and sensible advice you will get from this forum should make you feel more hopeful about getting your quality of life back and, importantly, getting more sleep. At higher doses prednisolone can make you feel like the Duracell bunny but at the moment the starting dose of 15mg isn’t doing the job of tackling the huge build up of inflammation which left you in such a poor state.
Once you get the dose of pred right you should feel so much better but just don’t go wild with delight, you are at the start of a long period of negotiation with your condition and the one and only drug that really helps. Sadly GPs don’t always know much about PMR and even Rheumatologists don’t always keep up with current research, but most importantly we are all different and you will need to be your best advocate for yourself. Finding this forum is the best first step, well done.
Hi and welcome! I had to start at 30mg back in 2016. I am a big gal and think that's why I needed a bigger dose at the start. I am down to 4mg now but I do have other joint and spinal issues too and take other drugs for that pain. It took me a long time to work out what pain meds work for what but the only thing that helps the PMR pain is prednisolone.
Hope your Rheumatologist is a good one. I suggest you make a note of your questions to take with you so you don't get hustled out the door without any answers.
Be kind to yourself.
Excellent advice, thank you
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