This is my first post - following blood tests my GP thinks I have PMR and I have been on Pred for 30 days. I started on 15mg (21 days) and then it was increased to 20mg as my physio suggested that I may need more, as still very stiff and with pain. My GP wasn’t keen but agreed to try the higher dose. He has now ordered a blood test to see what is happening! Am I expecting too much? - the stiffness and the pain haven’t completely gone, I can’t walk without crutches and climbing up and down stairs is slow and difficult. Any advice/insights would be very welcome. Thanks.
Is my Pred dose high enough or am I expecting too... - PMRGCAuk
Is my Pred dose high enough or am I expecting too much!
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44blue
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I did have immediate relief when I took the steroids but I could hardly get out of bed before. It did take two or three weeks to get less stiff, Instarted on 20mg. Steroids should give you at least 70% relief. Some lucky people get 100%, but not everyone. You may need a small amount more steroids. 25mg really is the maximum recommended for PMR. Your GP should also prescribe vitamin D with calcium tablets for possible steroid side effects and also you should have a Dexascan to check your bone density. Your GP should have given you a blood test after you started the steroids to see if they were working.
Thanks for the info. I have been prescribed Vit D with Calcium and will ask about a Dexascan. Are you saying that I should have had a blood test earlier and what should the test show now? Thanks
It is recommended you have a Dexascan when you go onto long term steroids.
Normally they check your inflammation markers called ESR and CRP. If these are raised it can mean PMR. When you take steroids the markers should then reduce to normal levels but if there is still inflammation they don't which could mean you do not have a high enough dose. What should happen is you have a blood test, inflammation markers are found to be high, doctor suspects PMR and gives patients steroids. A week later doctor asks for another blood test to see if the steroids have worked and the inflammation markers are dropping back to normal. It is normal to have regular blood tests including glucose HbA1c (yearly). If things are OK you should still have some blood tests say every three months. It is a good idea to get copies of your test results I discovered.
How bad were you to start with? I was bedbound in hospital, couldn't have stood up if there'd been a fire. Trying to remember exactly. After about a week a genius suggested PMR. I was put on Pred, 20 mg. I was still incredibly weak but after a few days managed to get on my feet with help and totter around the ward with a frame. The horrible pain in my shoulders and legs went almost immediately. I was transferred to a care home for rehab, where i stayed for two weeks. Another genius (I have really been incredibly fortunate personally) suggested bringing my rollator and by the time I left I was wheeling around satisfactorily but not far but incredibly importantly totally pain-free. So that's 3 weeks on 20 mg. I then spent another 4 weeks on 20 mg before attempting to reduce, by which time I was completely normal. Which I read as after 7 weeks on 20 mg there wasn't so much as a molecule of inflammation left in my body. I don't think 3 weeks on 15 mg would have remotely hacked it.
Thanks for answering. I was much worse that I am right now - very stiff hips and a terrible aching pain which never stopped - I worried about getting out of the house in an emergency too. I am much better but just not pain free and still can’t put my own socks on! I’ll wait and see what the blood test reveals.
Yes, PMR can be very grim, but as I and others have said enough Pred should pretty much sweep it up, so either you're not getting enough or as PMRPro has already said you don't have PMR. You said your GP thinks you have PMR. This paper suggests GPs aren't particularly good at diagnosing PMR:
Although traditionally a disease diagnosed and managed in primary care, our experience is that GPs have difficulty with the diagnosis of PMR. A review of 13 consecutive patients referred to hospital with PMR found that half the patients probably did not have it.5
A study of the GP records of 47 PMR patients from six widely distributed practices found that 25% showed only a gradual improvement on treatment, suggesting that PMR was not the underlying diagnosis; 38% were eventually referred to hospital for help with management.9 In other centres, change of diagnosis on follow up has been reported in up to a quarter of patients.10,1
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Hi and welcome!
The 2015 Recommendations say the starting dose should be the lowest effective dose in the range 12.5 to 25mg, exceptionally 30mg. It is possible you need more than 20mg - they look for a 70% improvement in symptoms within a couple of weeks maximum to decide it is likely to be PMR.
Unless you were in an awful state pre-pred I would say that you haven't achieved that and your GP should try 25mg for a week or so and if that doesn't achieve a notable improvement, you need to be referred urgently to a rheumatologist. A slow or incomplete response to pred is atypical and requires specialist consideration since it may be something else.
What differential diagnosis has the GP done? What blood tests?
I think it has improved at that level - I just hoped that I would be pain free and with near full movement in my hips. I couldn’t get out of bed and I couldn’t turn over or bear to sleep on my side - I don’t have constant pain - mostly first thing in the morning and later in the evening - if I’ve been busy. When ‘this’ happened, I waited for a few weeks before seeing a GP - in part because I thought it might go away - maybe I had injured myself as I already had a tendon/hip flexor pain and then because the medical practice was being merged with another larger one and seeing a GP was impossible for a while. I’m not sure which tests were done - (except the CRP) either and that is also because of the merger as I can’t access my medical record - but I’m going to sort it out this week and I’ll ask the GP about what the others were. Thanks.
"if I’ve been busy." - rings alarm bells. Managing PMR isn't just taking a tablet, it requires an adjustment of lifestyle and activity, especially in the earlier stages. Symptoms early in the morning is usual if the antiinflammatory effect of pred doesn't last the full 24 hoursm and since you say at the end of the day it starts up again. Often splitting the dose will sort that out, taking about 2/3 in the morning and the rest late enough in the day to extend the symptom relief to 24 hours. There is quite a lot to managing PMR successfully - and it changes ongoing. But initially, you have to behave as a poorly person until the inflammation is well managed.
Ok. When I say busy - I went to a supermarket (20 mins) and another store and walked a very short amount, also I drove my car for about 30 mins - all of which I have been unable to do since March when ‘this’ happened. It really was quite sedentary- not rushed or overdone but as you say, maybe too much! I will split the dose and see what happens - thanks for the advice.
You can't just dive into a relatively large amount of activity from almost nothing without expecting some comeback, Do you have a step counter when out at the supermarket? Walking around a large supermarket plus a short walk can soon add up to a few thousand steps. Some find driving very stressful and tiring - I don't, can drive all day, it is a very individual thing. It isn't just physical things, it is the messing about deciding what to buy, finding it, queueing at the check-out, loading the car, YOu don't say what other store - but clothes shopping even for one item can flatten me if I have to try something on!
Agree with PMRpro re -if I’ve been busy-
Maybe have a read of this link -and the one included regarding pacing yourself -
healthunlocked.com/pmrgcauk...
Thanks for that. I’ve read it and copied/printed for re-reading - lots of info. Maybe I did too much, which is frustrating though it is hopeful to have some things to try/adjust which may help.
Adjusting to new circumstances is a lot more difficult than you think - we all know that, having been there- but even small changes can make life a lot easier….
Your GP is being over-cautious I think. Some people need 25-30 mgs of Prednisalone to obtain relief for the initial few weeks. I experienced a miraculous relief from pain and stiffness within 2 days - total.
Thanks. I understand that there can be many variables between people - I hope that he can accept that. I don’t know this GP - he picked up my message at the practice after his practice merged with the one I was at. On the plus side he has a good reputation - I’ll ask him about a Rheumatologist too. Thanks.
The GP I saw prescribed 30mg of prednisolone to the horror of my medically trained daughter and another GP in the practice both who said it was a too high starting dose. It was like a miracle drug and I had some improvement within hours of the first dose and pain and stiffness much improved within a couple of days
The problem with starting at 30mg is that it makes it more difficult to go lower, Most people will do well at 15 or 20 if you start there and with the lower dose you also have another brick in the wall of evidence when the symptoms respond dramatically to this low to moderate dose which is characteristic of at least once common version of PMR. If you need more or much longer then a rheumy needs some input as it suggests it MAY not be PMR.
In hindsight the other GP and my daughter were correct as I then struggled getting below 10mg but the relief in being able to get in and out of bed, stand up after sitting and just function again were so welcome.
The level you start at doesn't usually affect reduction - you couldn't get below 10mg because of the ongoing activity of the underlying autoimmune disorder. I started at 15mg, had a miracle in 6 hours, but it took 4 years to get reliably below 10mg and then had a major flare in disease activity which took me back to 15 and then I couldn;t get down to 10mg, never mind below it.
I agree with PMR pro. My doctor started at 15 mg and believe me I had terrible pain. She told me I should see results within days and to be honest even the same day i felt less pain. As i have said here before splitting the dose helps my symptoms but may vary person to person.
The important words she said was that if i saw little improvement within days of starting pred it was unlikey to be PMR and they would look for other causes. So if you have not seen much inprovement your doctor may be right to be worry about increasing your dose.
Speedy response to only 15mg is now recognised to be outdated and not be an essential diagnostic point - 20 or even 25mg is acceptable if 15 doesn't work.
I did respond quickly and I’d say 75% of the aching/pain were gone - but I still have a lot of stiffness although saying that, I noticed this morning that I could almost put my socks on today!
Thanks for replying. Do you know why you received such a high dose? I wondered if being heavier had any bearing on an appropriate dose.
I went to A&E for diagnosis and was started on 30mg which gave me 70% relief. Now, most people seem to try 15mg going higher if no relief. I have 3 monthly blood tests and always normal for everything.
I don't know why I'm my case, weight certainly wasn't an issue. My CRP and ESR were very high so suspect this might have been the reason
Years ago 30mg was the standard starting dose and then they started to panic about the cumulative dose and one study showed 75% of patients responded in a month to 12.5mg and they dropped the recommended dose to 15mg. Fair enough start there - but if it doesn't work, they need to go higher and that is reflected in the last lot of Recommendations - I gave the link above.
Hi, When diagnosed I was started on 15mg by a temp doctor but after a few days my own doctor upped me to 30mg for a week, then 25mg for a week and then 20mg where I started tapering down with one of the plans from this forum. Never needed a Rheumy but been very fortunate with excellent and very supportive GP's.
I was started on 15mg but that didn't touch the sides. Had to go to 25mg before blessed relief from the pain.
I was diagnosed after 5 months of hellish pain. Neurologist put me on 20 mg. of Pred immediately (PMR). Was able to move my right arm and wrist the next morning and the rest was alleviated within a few days. Stayed at 20 mg. until May, 2022. Referred to a Rheumatologist, who is a racehorse about getting of the Prednisone. Sounds like you need another 5 mg. If more Pred doesn't work, then perhaps it's not PMR and more blood tests would be in order.
I was diagnosed last November by my GP and put on 15mg but that didn't touch the pain. At that time I couldn't sleep in a bed because I couldn't get out of it (and with a weak bladder, that's not a great idea!) I slept on the reclining sofa for 6 weeks.
After 4 weeks I spoke to my GP again and explained the pain level - I have a pretty high tolerance due to a back injury some years ago. When I told her the pain level was in line with crushing vertebrae/childbirth my dose was increased to 30mg which gave almost instant relief. Or, I should say that I could function from around 10a.m. rather than lunch time.
Currently on 15mg (I did taper to 10, too fast - due to a major operation) but about to start tapering again. I've been putting it off but I've been at this dose for 3 weeks now and things have improved. Time to go down to 12.5, I think.
I suspect you need a higher dose of prednisone they should have checked your inflammatory markers before prednisone I started at 50mg had to go to 60mg oh I wish I could have stated at a lower dose it has taken me almost a year to get below 10mg but at 50mg I could get out of bed myself within 24hrs but I was still in quite a big of pain 2 days at 60mg and I was a new person!! I like many suffered months bed ridden unable to care for myself until a sharp thinking Dr figured it out… I often wonder what would have happened had they started me at 10-15mg… if a higher dose doesn’t get you to at least 70% relieve you may have something other than PMR… best of luck PMR has changed my life how I eat, think and move..
Give it a bit more time for sure, but it took 30 mg for me..still on 27.5 mg for 7 weeks due to blood labs staying the same. I imagine I will begin tapering very slowly soon. Also, I still am not 100% pain-free..I'd say anywhere from 85-90% depending upon the day. Lots of activity makes it worse sometimes and that drops to 70% then. You will get good advice from the pros..I am still fairly new.
Hi. I was in a bad way, unable to really move or use my arms when I was diagnosed. I started on 20mg per day and got no pain relief at all -- after 4 days I called my doctor and she increased me to 40mg per day -- all pain gone! I was so thankful. It did make tapering off of the steroids a LOT slower. It's been a long road, but after five years I am down 1/4mg prednisolone per day and (fingers crossed) tapering off. Hang in there, and talk to your doctor.
As PMRPro says, a poorly person. I recognize that I'm ill. You wouldn't go running with the flu. So long as i treat my PMR proper, like, it doesn't really bother me. I recognize it lurks!
I have mobility issues aside from PMR, spinal curvature and walk with a rollator. i live alone and independent. By the standards of some people here I do excessively little. I keep well on it. Two things. Find the easiest way of doing things. So far as humanly possible, avoid stress, bearing in mind PMR gets upset by anything.
it took me awhile to be pain free I started on 15 mg, I couldn’t get out of bed I was in to much pain in my neck and both my legs. Good luck. I am now down to 2 mg a day
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