I’ve just done 1 week trial on 15mg Prednisolone (which has eased symptoms of PMR to some extent). GP will call tomorrow to review and presumably come up with plan for future treatment. I’ve made notes over past 7 days to go through with him but I wondered if there are particular questions I should be asking?
This is all very new to me but I’ve found this forum a great source of information.
If your GP diagnoses PMR you should be prescribed Vitamin D with calcium tablets and you should have a Dexascan to check your bone density. Your GP should tell you about slowly tapering the dose, blood tests etc.
Hi, assuming it is PMR, in your discussion you might want to discuss whether your 15mg dose was high enough. Ideally you should feel at lesxtv70% - 80% pain/symptom free, if not, then you might need a higher dose to begin with, the guidelines are between 15mg - 25mg. Suggest you stay at this dose for around three weeks minimum and taper down slowly. Various taper plans in the FAQ'S.
if 15mg 'eased symptoms to some extent'...then don't think about tapering...think about at least a week at 20mg. This is a common starting dose, do insist that you want to try it. The tapering can be a long slow process, with hiccups along the way. I began with 20mg 4.5 years ago and am still tapering (GCA was the worst hiccup). You could be taking steroids for a long time so be prepared: take vit D3 and K2 and eat a calcium rich diet (to aovid osteoporosis). Reduce carbs (to void weight gain and the tendency for pred to make you pre/diabetic).
and most important; read the posts on this forum...lots of wonderful info and support
good luck!
Thank you so much
As already mentioned - what do you mean by "to some extent"? That the symptoms have eased is very suggestive that this IS PMR, but it sounds as if either you need a bit more, 20mg is a reasonable starting dose too, or you may have been doing too much trying to catch up on what you hadn't been doing before!
Like you I have also been on prednisolone for the past 9 days due to acute pain in arms and shoulders and pain in legs. Prescribed 20mg/day for first 7 days and now 15mg/day until Thursday when I have appointment with GP for a review. Not yet confirmed as PMR so will see what she says. Pain has subsided a great deal but still not disappeared completely. Already on high calcium and Vit D as also have PBC. Fatigue is main issue now with every task being a major effort! Let’s keep in touch to see what the future holds for us. X
That does sound similar to my experience- it’s hard to assess how much symptoms and pain have been easing isn’t it, but it does feel slightly less like Groundhog Day in the morning. Very tired but luckily am in a position to do very little as live on my own and am retired. By midday I’m feeling relatively like myself again. Have been taking vitamin D3 anyway but will look into calcium and other supplements (will ask GP when he rings for review). My diet is pretty good - ironically I’ve just completed Zoe 4 month programme in which I lost over a stone and my eating habits are quite low carb and veg/bean/nut/fibre rich these days. But making sure I eat cheese yog etc too…. What a business. Thanks for your advice and good to keep in touch with this amazingly helpful forum!
Remember with PMR the more active you become through the day, the better you feel. Sitting around doing nothing makes it worse, got to keep moving.
Others have given advice, but you do need to be honest about how much the Pred has helped… as PMRpro has said you may need more and/or a longer time to get a better result.
And so to that end, don’t be fobbed off if GP seems uncertain that a week hasn’t proved 100% it’s PMR. Request another week - at least.
Good luck..
Also have they done any blood tests? Has your CRP fallen? Often used as part of the diagnosis process, though not infallible as they just show 'there is something going on, somewhere'.
Guess this meant for Unfortunate1 not me 😊
Yes soz, it's easy to get lost in threads and reply to a replyer rather than the original poster. Especially with Pred brain fog
Yes I know …. With or without brain fog.., was just letting you know really, nowt else.. 😊
Thank you again. I will act on your advice. As it was me who self diagnosed and asked GP if my painful muscles could be PMR which he then acted on & requested blood tests etc, he hopefully won’t be resistant to what I’ve been finding out! I now have a list of points to make to him. I feel I do need a bit longer and/or slightly higher dose of Pred. Fingers crossed for a useful discussion.
I always word things along the lines of 'do you think it'd be worth trying a slightly higher dose for another week to be on the safe side?' to make them think it's their idea (tip I got off a GP receptionist, she said she always starts with 'I was wondering ...' LOL
Excellent tactic… i now have another call booked tomorrow as my GP needs to consult with his senior colleague following the feedback I gave him this morning. This might or might not mean he hasn’t lots of experience with PMR. He didn’t seem to mind my putting forward the results of my googling the first time I saw him.
Probably double-checking … and if he’s not 100% sure, fair do’s. Let’s hope, between them they come to a sensible decision…
It would be perfectly fine to also say you have been in touch with the charity and it seems from what you've read that it's fiendishly difficiult to diagnose PMR as there is no one foolproof way, that'll make them feel good, like detectives. Worth printing off a leaflet or two from the resources section of the Charity webpage if do get a face to face
pmrgca.org.uk/information-a...
Yes that’s a good idea - am planning to print out the info leaflet. And I hope i will get a face to face as I do find phone consultations quite difficult to not only convey what I want to convey, but also to understand all the details I want from the doctor.
I always pre=plan write down everything I want to say on a piece of paper, and when I see my rheumie even do a photocipy for her so we don't miss anything. i also ak for a summary on what's agreed and what's going to happen next. I've learned the hard way I guess over the years. I once wote a post on here on advice when talking to your doctor which was given to me by a doctor. Here's the link to it
healthunlocked.com/pmrgcauk...
Just read that link - very helpful advice! I have been writing up notes of what to say and what to ask, but my notes of what the GP said in today’s phone call are quite scrappy! However as the outcome is a further 3 weeks trial on same dose of Pred (15mg) and blood/urine tests before next review, it’ll give me a chance to be more organised! Thank you again.
Hmm ...the old adage of if you keep on doing what you've always done you'll keep on getting what you've always got springs to my mind. 15 doesn't seem to have worked, or it has worked a bit, but not entirely. For most people, if Pred works the results are pretty quick, within days, even hours. So to me, the next option ought to be to try a higher dose, not the same dose for another few weeks. I'm certainly not saying double your dose because I can't give medical advice, but if you try say another few days and still nothing happens I'd go back to your GP for further clarification. I personally have had PMR for a long time adn sometimes had to go up to 25 or 30 for a few days to clear out built up inflammatin from a flare. Mny peole on here start on 15 and if htat doesn't work the doctor tries a higher dose that then does. I hope the longer trial of 15 works for you, but if not don't hang about, get back there and certainly don't accept 'the steroids didn't work so therefore it's not PMR' line unless and until you've had a hance to try a higher dose. I am only speaking from experience.
Parallels the Italian paper that found 75% of patients started on 12.5mg responded within a month. It is probably what makes them think 15mg will catch the other 25% ...
But I know several people in the Yorkshire group who ended up needing a higher starting dose than 15. One was dx in France where they prescribe so much per kilo of body weight, she was not at all overweight but needed 20mg. The guidelines are just guidelines at the end of the day - and thecurrent ones go bakck to 2015, medics have learned a lot sicne then. Hopefully, some of them anyway
Oh absolutely and that is why the 2015 Recommendations say 12.5 to 25mg as the starting dose range. But they are terrified of using pred and throw the baby out with the bathwater. By using an inadequate dose they miss cases altogether and patients don't do as well as they should. They haven't learned much more since 2015 - they are still ignoring the need for more pred or tapering too fast and as a result patients almost certainly get more pred in the end than they need.
But you have to combine the 2015 Recommendations with the Treat to Target paper and do it properly. Don't ask for more Recommendations because they will fight over it for years again and still get no further!
Not heard of Treat to target- please tell me more?
Don't you follow me? I wrote a post I think
pubmed.ncbi.nlm.nih.gov/368....
BMJ won't load it for me so that is the best I can do at the moment. I see Google has a new iteration - gawd help me ...
😀 I do follow you like a puppy dog but must have missed that one LOL. Not been on here much th last few months as my life is so complicated atm. Ine of the things on my To do list is go through your old posts (and others who post papers etc) and make a list of htem to see if I've missed anything. And then go through all the FAQs which I haven't read yet. ATM I'm trying to find simple guides to the spine and what's going on with mine, you kindly posted some last week that I have'nt read yet.
It was a YEAR ago ...
In FAQs 😊
And where are they please? (asking for a friend)😆
Tell your friend -
1. FINDING PINNED POSTS [includes FAQs]
NOTE they cannot be accessed on the My Feed page, you need to be on Posts page.
There are a couple of ways -
1. Easiest on Posts page - There is a facility to Sort posts - select Pinned [see picture]
2. Again on Posts page - under Pinned posts -right hand side of this page, although the location on your screen does vary depending which device you are using - could be under currents posts on iPhone..
3. or you should get a Featured Content Banner under each post on this page [unless you’ve deleted it in the past]….
😆😆😆 I'll tell her all about it later and may even get round to looking at it all myself one of these days. I will spend all next Thursday looking at it. Seriously, thank you from the bottom of my heart, you guys, all volunteers, are just amazing for getting all that organised, and always being here for us - not all heroes wear capes.
Our pleasure … well most of the time… 🤣😂
x-rays have recently revealed that I have two fractured verebrae L3 and L4 and everyone is jumping to the conclusion that that the steroids are to blame. Maybe they are but maybe they're not. There could be several different or comorbid explanations and components. At the same time I may or may not have GTB and or other back problems. All I know is that without the steroids I'd probably have been in unbearable pain or a wheelchair for the last 12 years unable to do anything so Hobsons choice. Scans etc over the next few months should give more information as to what is going on. In the research paper mentioned above it also mentions things like interspinal bursitis whch I've never heard of before so I'm having to do a lot of techie Googling today to find out what al these things mean. The kettle's going to be going on a lot and I must remember not to sit down at the computer more than 20 mins at a time or summat else will end up hurting LOL.
My bone density is still OK - but have a compression fracture about there too, Doesn't hurt though. The hurty stuff is sacroiliac and muscle spasm and it doesn't hurt since Christian did an ultrasound-guided steroid injection. Using painkillers is just extra luxury!
I think mine is the same, 'the hurty stuff' is around the sacroilliac joints on both sides and lower ribs. And now down the left thigh which I'm being told is referred pain from trochanteric bursitis. Back spasms were the worst and horrendous until last Easter but the Diazepam when I eventually persuaded them to give it to me largely sorted them. I can't understand why they didn't x-ray my back when I ended up in A&E with sudden severe back pain. My DEXA was fine two years ago and there was nowt wrong with the vertebrae a year ago either. I still think ultrasound would be useful especially with what Ben said today about bursitis but atm I'm booked in for MRi and CT scans first next month so let's see and take it from there.
Can i just check something I’m not quite clear about - should the painful muscles and morning stiffness/difficulty moving normally plus tiredness through day all pretty much cease if the steroids are working within that 1st week’s trial? It’s certainly better than it was but it’s not really there yet…
It will only cease if you are on ENOUGH pred and some people are never entirely pain-free anyway. A week at 15mg is often NOT a fair trial - 20mg is a much better starting dose. If you are a lot better then it is fair for them to try 20mg . How much better are you? They look for 70% global improvement - all the stiffness may be gone but still some pain or any combination. I had the 70% in 6 hours but it was about 3 or 4 months before the trochanteric bursitis and foot pain had just about gone.
I've never understood why they say 70% improvement. If I have a flare and take more steroids it's nearer 200% improvement. Isn't it like saying a little headache is better than having a big headache so just take one painkiller instead of 2? Or like the Dripping tap and bucket analogy, if you don't clear out all the accumulated inflammation and hten keep it under control it's just going to build up again?
It’s part of the diagnostic process so I guess if you tick all the boxes with symptoms and do get at least 70% improvement then it’s like to be PMR.
If you don’t get anything like that rate of improvement then they query is it PMR?
But as we know it’s still a bit hit and miss…,
Number plucked out of thin air probably but it applies for steroid-naive patients really. The notable improvement very quickly in response to a moderate dose of pred is said to be characteristic of PMR - other things need more or longer and it is important not to start with 40 or 50mg which lots of things will respond to. Then how the improvement happens may be significant in suggesting an arthritis rather than PMR. Getting stuck at a higher dose is nother signpost. But it does need sensible tapering - which as we know isn't always a given.
Ah, I see. I bit more clearly anyway. Thanks for the explanation. When my GP eventually suspected I might have PMR (it took him nearly a year) he started me on 10mg. Compared to not being abe to move at all before it felt miraculous, within about 24 hours. But I was still very stiff and struggled to walk, and then I started to taper as instructed, only about a month or so later. With hindsight he got the dosing wrong, but I still thought it was good at the time as I knew as little as he did about PMR so just trusted him to know what he was doing. I think I was only the 2nd case of PMR he'd ever come across, and the other one was his father in law who wasn't a patient. I can't really blame him, I just wish I'd asked more questions and researched PMR earlier.
Not sure if we’ve already said, but a week at 15mg may not
a) be longer enough, nor
b) be high enough dose for everyone.
And it’s a trial on almost the lowest dose (guidelines say lowest dose to give relief between 12,5mg to 25mg) -so there is still wriggle room.
A success rate is also 70% relief in symptoms (not 100%). Do you think you are near that?
I’d suggest certainly longer -3 weeks absolute minimum-and/or slightly higher dose of 20mg is required.
Perfectly put thanks, that is just what I was trying to say
Welcome 😊
I did / do find it hard to assess what 70 or 80 % improvement is - it seems such a guesstimate in an area I’ve been hitherto unaware of ! I did my best to outline my routine and observations over the past week, what it was like before, during and after getting out of bed and how long the various pains lasted and when they reduced etc. and the fact that they never entirely go away though much better as the day progresses. I made the possible mistake of saying I get a really slight headache when I get up, which made GP worried so I wish I’d not mentioned it… I just wondered if it could be due to the landoprazole as it comes on at the beginning of the day, but maybe more likely due to slightly odd sleep patterns at the moment . I do feel I’m learning more each day thanks largely to this community.
Yes it is difficult when you don’t have a definite yes or no response… and if it been building up for a few weeks/months you maybe cannot remembered what it was like when you felt normal… if there is such a thing!
Thank you, helpful as always.
before long you need to have a blood test to check your glucose levels. Steroids can give steroid induced diabetes.
The most important things are do not rush to taper, if you feel great do not do too much, pace yourself and finally stick with this group and ask as many questions as you need
Also if PMR is the diagnosis then it isn’t a quick fix. I hope you have a GP that recognises the condition, and its journey.
I guess I’ll find out! But forewarned is forearmed and I know I need to be fairly proactive!
Advice on how to talk to Rheumy about a slow taper at the lower doses
Thoughts please on dissolving Prednisolone in water to drink instead of swallowing whole.
Would appreciate your help and advice on whether to increase prednisolone dose.
Started on 20mgs. of prednisolone nearly 8 years ago for PMR. Still unable to drop to 2mgs.
Staying at a low dose of prednisolone for a few months to avoid flare.
