Hello everyone. What an informative forum this is! I was diagnosed with probable PMR in mid Sept 2017, having had a very stiff neck for a couple of months which then spread to both shoulders and hips. I was virtually disabled for 4 months and could hardly move, and awaiting a NHS physio referral which never materialised (long story!) until I eventually got a physio assessment end of August, after 3 months, and the lovely guy guessed it was PMR and referred me back to my Doctor.
Blood tests suggested PRM and I was put on 15mg Pred for 8 days, which did nothing. Doctor thought probably not PMR but try 30mg for 7 days and see what happens. Pain and stiffness goes and I am a new person again! On Doctor’s advice reduced to 25 mg for a week and then reduce to 20mg. Managed to reduce down to 17.5 but had quite a lot of right shoulder pain.
Hospital Rheumy appt on 2 Nov - he thought it was PMR. Gave me a slower reducing schedule of 2.5 every two weeks and when down to 10 reduce by 1mg very 4 weeks. If I had a flare to go up to previous dosage for 2 weeks and then resume.
I have managed to get down to 15 but with a lot of shoulder pain and at 12.5 I have given up and gone up again to 20 which seems to be the dose my body needs to be relatively pain free. I now think I will try the simple tapering method suggested by Dorset Lady once the pain has subsided at 20mg.
I’m thinking that because I needed a higher dose of Pred than is usual/recommended for PMR I may have to take my time coming down, despite doctors wanting to reduce it quickly. I take Adcal-D3 calcium and have been asked to take Risedronate, although it am resisting this at the moment. Until the PMR I taught dance and my bone scan was fine. I intend to resume this in January, so need to be mobile....
Has anyone else needed a high dose of Pred to get it under control? Or am I just difficult! 😉I’m female and 63, by the way.
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peace_lover
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Yes - I was actually started at 20mg. Stayed there for six days, and was moved to 30mg to get the pain under control.
Was 23 days at 30mg, 14 days at 25mg, 14 days at 20mg, 14 days at 17.5mg, and then my taper really slowed down! Never less than four weeks at any level, and never more than 10% of my previous dose. Took me just over three months to get from 30 to 15, then another two and a half years to get to 6mg, which is where I am now.
I am not suggesting you follow this taper; it is merely what I did, and PMR/prednisolone withdrawal is a very individual thing. What works for one doesn't necessarily work for another. I have managed to avoid too much yoyoing, and haven't had a major flare.
Dorset Lady always gives good advice, and has been a great help to me.
Thanks. I’m glad I’m not the only one who needed a higher dose, but was slightly concerned about going back to a highish dose. I think humans are all different and respond to medicine differently, but sometimes doctors don’t like to deviate from the norm, especially if it’s not their speciality. I understand this.
oh this is my taper ... I am now at 17.5 and it is suddenly harder. Good to hear. I know this from other posts...but reassuring to see my numbers! thanks.
Hi peace-lover
Welcome to the club. As you have seen lots of very generous and knowledgeable members will be able to comment on your questions.
My little but if input is that I believe the initial dose for PMR can range between 15 and 25mg with some on 30mg where thats whats worked. Some people need more than others to achieve some reduction of symptoms they can live with. You are in early days so need to agree some kind of tapering with Dr. You seem to have handle on treating symptoms already.
Thanks. I have more of a handle due to reading the comments on here! I’m going to take it slowly and try not to get too worried about staying at a higher dose for a bit. I’ll trade off the side effects of Pred for a decent pain free life. My doctor (when I can actually get an appointment!) is pretty good at listening.
Hi,
Have you been assessed for Giant Cell Arteritis, it can present with involvement of the Aorta and the arteries off it ( subclavian, carotid ) etc and sometimes spares the Temporal and other arteries.
It requires a higher dose of prednisolone to bring under control, it might be worthwhile asking about the possibility and have the BP in both arms checked ( to see if there are any differences ) and your pulses listened to with a stethoscope to check for bruits which can indicate inflamation or blockages.
The problem is that many auto immune/ auto Inflamatory diseases will respond to higher doses of pred, not just PMR. Personally I would want to know that all the PMR mimics had been ruled out.
I speak as someone who had " Classic " symptoms of PMR/GCA and responded to 15 mg of pred at first and then higher doses but had great difficulty tapering. My final diagnosis wasn't PMR/ GCA, I ended up taking prednisolone for 2 years unnecessarily.
I have Ankylosing Spondylitis ( AS ) with features of Behcets Syndrome ( a rare Vasculitis variant ).
AS can present with polymyalgic symptoms in older women in particular, I was 46 when I first became unwell. I have involvement of my aorta ( thoracic ascending aortic aneurysm ) and have picked up a few other diseases along the way.
Thankfully I am now much better on Infliximab and Methotrexate.
I am part of the Helpline team at Vasculitis UK, all the auto immune/ auto Inflamatory Rheumatic diseases share symptoms to some degree and it can be difficult to work out a diagnosis. Prednisolone very much masks symptoms and can make definitive diagnosis harder.
Please don't think I am saying you don't have PMR, I just think knowledge is power and it's important to know what the Rheumatologist has ruled out.
I have GCA. Your experience made me curious, not for myself as I am confident in my diagnosis, but just curious. How terrible to have been mis-diagnosed for so long. Those 2 years you could have been getting proper treatment. So glad they figured it out and you are feeling better.
It can indicate a problem with the subclavian or brachial artery which can indicate GCA.
There should be less than 10mHg between the 2 arms. I do think that everyone with a diagnosis of PMR and GCA should have it done as it's quick, simple and non invasive!
Sounds like you've tapered too quickly. I was diagnosed with GCA just over 2 years ago and started on 40mg. Reduced as per NHS taper plan and got down to 7mg earlier this year. I was in a really bad shape by then (kept going on max painkillers) and was then diagnosed with PMR. Pred raised to 20mg and then normal taper down to 10mg. For 6 months I was up and down several times and (after finding this Forum) I contacted my Rheumatologist and suggested I go up to to 20mg and then reduce very slowly. I feel good and, if any symptoms return, I can go up 1mg to stabilize the body again.
If you specifically have shoulder pain it could be bursitis - which is very common in PMR. When you have tendonitis or bursitis it can take much longer to fade - it was 5 or 6 months before my hip burisitis went away.
If your bone scan was fine - resist the bisphosphonates until you need them. I have never needed them - even after 7 years of pred.
Hi PMRpro. Thanks. I am resisting the biophosphates at the moment, and feeling a bit happier about my decision now.
I have considered that the shoulder pain might be bursitis. As a dance teacher for adults I have had a couple of students with it so know how it goes. I shall see how I do and go back to my doctor if the shoulder pain specifically doesn’t improve.
Thanks for all your replies. I agree knowledge is power. I also have an autoimmune liver disease (Primary Biliary Cholangitis) and found most of my information about it from an excellent support group (the consultant didn’t think they could help me and discouraged it!). I would know very little about it or PMR without these groups 🙁
I shall take it very slowly and don’t feel quite so bad about needing a higher dose initially, even though at least one doctor was doubtful of the diagnosis “because 15mg is the normal starting dose for PMR”. I think hardly ever seeing the same doctor twice doesn’t help, but that’s the NHS for you at the moment. But at least the Rheumy thought it was too. Of course, there is always the chance that it might be late onset RA ( I have osteoarthritis as well) but so far the signs are negative. We shall see.
The 2015 guidelines say "the lowest effective dose in the range 12.5 to 25mg/day, exceptionally 30mg" - because it varies. Some people don't absorb as much as others - so obviously need more. The disease is more active in some than others - and they will need more.
My Father had PBC so it's something I know a little about.
Have they ruled out the PBC for causing your symptoms as I know that some patients can get joint pain and inflammation with it. I think PBC increases the risk of oestroporosis as well.
Do you see a Consultant who specialises in PBC are are they and your Rheumatologist willing to liaise?
Actually the Rheumy did mention this to me, something I had not heard of, but still veered towards PMR as his diagnosis.
Fewer men get PBC than women I believe, how unlucky for your dad.
I haven’t seen my PBC consultant for about 8 years. Yep. I got mislaid off the hospital system. My new Dr has picked this up and I’ve had my bloods done and a liver scan, I’m OK, it’s not progressing, but I still suffer from chronic fatigue, but manage it.
Hi Peace-lover and welcome to the forum. It’s lovely when someone else come out from the shadows. A number of people, during my 20 months on here have seemed to require a higher that average dose of Prednisalone to get the rampant inflammation under control, initially. 15 mgs certainly seems to prove to be not enough for many. I was started on 20 mgs and within 2 days I was restored and a very happy bunny. I could have kissed my diagnosing doctor. I had been trailing to the GPS with vague painful symptoms and low level flu symptoms for months. I had been tested for lots of nasties but never PMR ( I had never heard of it).
Of course 20 mgs saturates the body in steroid. We only make about 8 mgs of cortisone in a normal body’s Adrenal Function. The next task is to very carefully and slowly wean ourselves off the massive dose and down to a dose that enables us to be relately pain free and flexible. It is a good idea to use one of the tried and tested tapering methods on here.
In my experience each drop produces a few days of pain and feeling out of sorts, then hopefully settles. Drops after 10 mgs are much harder and some people go down by 0.5 mgs each time. I am stuck at 7 for the moment with travelling, Christmas then a long haul flight to Australia for a month, I have decided to stay at this dose until I return home in February. Better than risking a flare I think.
Good luck with your taper. Do beware of the return of old arthritic pains that are not PMR related.
Sorry to hear you’ve had an up and down ride. Your first reduction plan as you’ve guessed was obviously too quick, but fairly understandable as you were on 30mg, but I think it still takes at least a month for the initial inflammation to be fully under control. Your second plan sounds much better, but if you’ve been yoyoing I think that messes your body about and when that happens it takes longer to get things under control - not your fault, but sometimes I think the doctors are so touchy about Pred they don’t let it do it’s job initially.
Let the 20mg really get a grip of the pain, and after the festive season think about reducing. If your GP is good at listening hopefully he’ll agree to a more measured taper.
Would say that your shoulder (if one sided) is more likely to be something other than PMR. Bursitis or arthritis maybe - do ordinary painkillers help at all? Paracetamol ok to take with Pred or small amount of Ibruprofen gel, not tablets though.
Hi. I’m going take things slowly over the Christmas season and see my Dr again in the New Year. It’s the earliest routine appointment I will get anyway. I have a feeling that something else is going on in my right shoulder- I have a very old injury there and always find once you have a weakness, it never quite goes away. Bursitis sounds a likely possibility.
Could it be arthritis? If so a steroid injection might help. I know it sounds silly as you’re taking steroids but an injection gets right into the spot and may help. Also could help with bursitis. - had a bad hip recently and had s couple of injections plus massage.
It’s a possibility, I have osteoarthritis in my hands, knees and recently found out mildly in my hips. I’m going to see whether it settles down over the Christmas period and then go back to my Dr if it hasn’t. From what I’ve read here it seems quite a few people have some residual pain in one shoulder (usually the right, are they all right handed, I’m thinking?) once the major pain and stiffness of PMR have subsided.
Don’t know about the right shoulder/right handed connection. I’m right handed but my worst shoulder for arthritis is my left, right not brilliant but nowhere near as bad.
I put it down to always carrying my shoulder bag on the left - it seems to “sit” there better than the right, and I probably carried my school satchel on the same shoulder.
Have tried, but can’t get on with over the body bags!
I was diagnosed early October and very similar profile to your own. I got down to 10mg after steady taper but was uncomfortable at 8.5 so briefly back to 10 then 12.5 where I’ve been for two weeks. Intending to stay here until New Year. My plan then to reduce by 1 a month.
My own docs advice was good and I will go back for more tests after Christmas just to make sure I’m on the right track.
Bad about stopping your dance teaching though. I’ll get back on that. I’m late for my light exercise session. I do find it helps.
i started at 15mg a day at the end of September 2017 when all of a sudden I could not move my arms and my shoulders were hurting so much that I could not do anything anymore. That dosage made all my pains disappear and today my rheumatologist decided to lower the dose to 12.5mg a day from today to Jan1, 2018 after the blood test showed a noticeable improvement. She told me that she hopes to get me off prednisoneby the end of 2018. I am very pleased as my head was getting lighte and lighter and I was afraid to drive.
She may hope all she likes - she isn't in charge, the PMR is, and there is nothing she can do about that. You will get off pred when the underlying cause of the symptoms we call PMR has burnt out and gone into remission. That may be in 2 years - but for 3/4 of patients it is more likely to be more like 4 to 6 years.
I said I’d get back. This forum has some great advice and individual experiences all help to put it in perspective. Whilst I’m a newcomer to PMR, my wife at last seems to be coming through after 4 years.
I was very active, cycling, climbing, skiing, golf before Poly bit me over two months back. My own take is that if I do NOTHING I’ll go spare. Although it hurts a bit, I find that some gentle stretches when I get up and a little cardio,or a walk, if possible, does seem to help. Basic yoga before bed also helps rest.
Too bad about your dancing. I have managed a BIT of cycling and skiing but get tired easily, need regular rests and then probably a day off. So don’t despair, even if we are in for a long journey.
All the above is just my experience, not advice or even a suggestion. I do think that attention to diet will help, too. Lots of greens, berries of most sorts, turmeric and nuts. Keep away from processed foods!
That’s enough from me. Others on here know much more.
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