Hi - I’d be most grateful for some advice as so much has happened, it is hard to tell what to do next. I was struck by what turned out to be PMR literally overnight on 22/2/24. My GP listened, checked my inflammatory markers, was alarmed by how high they were, and referred me to a rheumatologist who in early April diagnosed PMR and put me on 15mg of prednisone. I felt hugely better almost immediately. I was told to drop 2.5 mg every three weeks until I hit 5 mg, and then I was to drop 1 mg every four weeks.
I started feeling a bit stiff and sore again (nothing like as bad as in February, but certainly not as well as I had felt before PMR - or after it on 15mg ) somewhere between 10 mg and 7.5mg. At that point I wasn’t sure if the stiffness and soreness was PMR or something else , however by the time I hit 4 mg I knew something wasn’t right. A locum GP (my usual was on holiday) suggested I should go back up to 5mg and when I pushed said OK go back up to 6mg for about a week and then come down by 0.5 of a milligram every month or so. I did what he said and am currently on 5.5mg.
I’m not feeling good right now, but should add that in addition three weeks ago I dislocated my shoulder when I slipped on the stairs, and 10 days ago I was diagnosed with cellulitis in my leg, which initial doses of antibiotics didn’t touch so I had to go up to 1000 mg of penicillin four times a day to get it under control which happily it now is and I’m about to finish my course of antibiotics. I work full time in a demanding job - though right now they are letting me work from home so I don’t have to travel - and am a carer for an elderly relative.
I have an appointment with my proper GP to discuss my PMR in early October (the earliest I could get) but I’m at something of a loss as to what to say. My GP is very far from an expert but I am confident will listen to me.
I’m not happy with how I feel right now - stiff, sore, tired - but I could cope with it (it is not great, but not as truly awful as it was in March) if coping would allow my natural production of steroids to kick in and solve the problem that way, but would that solve the problem? I’d be very grateful indeed for thoughts on what is going on and advice on what might be the best thing to ask of my GP.
And if I may be permitted a small self pity moment amongst ‘friends’ all going through their own version of this - or considerably worse - I am so tired of being tired, stiff and sore, of juggling 10+ pills a day that can’t be taken together and of digestive and other side effects. I’m tough and keep going because I have to but …..
Thanks for listening and sorry not to be briefer
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tiredbutoptimistic
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Unfortunately the tapering plan you were given is nearly always far too fast for a PMR patient. A starting dose of 15 mg is standard and it worked well for you. How long were you at 15 mg? A month or six weeks is usual, and then a taper of no more than 10% of the dose, Usually people are told to taper by 2.5 mg at first but in fact as you can see that is already too much at a time. Moreover, even though the first taper or so may go well it is really important to slow down when approching 10 mg. From then on the taper shouldn't be more than 1 mg at a time and each taper should take at least four weeks. Many also find it easier if possible to taper by half a mg at a time especially as the dose gets lower. At any point when pain returns tapering must pause. If going too fast one can experience pred withdrawal pain, but it is also possible that you've reached the lowest dose which still manages the PMR pain. From your description you've gone well past the pred withdrawal range into inadequate control of your active PMR.
Pred is NOT A CURE. Unlike some diseases where a course of prednisone can lead to cure or remission, PMR will only go when it is ready, and that can be, usually is, several years. Once the lowest dose has been reached it is necessary to limit tapering to occasional tests to see if you're ready to drop a step. Eventually you will get lower, but as I said, this may take years. And, no, your own production of cortisol is not what controls PMR pain. Sorry!
We are all different. In my case I started at 15. After a month I was told to drop by 1 mg a week. This is considered fast, but in fact was all right until 9 mg. Fortunately my doctor had told me to stop tapering if symptoms returned. I went back to 10 mg for about three weeks, then started a slow taper regime which I continued, first with 1 mg drops again, then half a mg, reaching 3 mg by the end of the first year, but that turned out to be very close to my lowest best dose which for several years hovered around 2-2.5 mg. I was on pred for 8 .5 years, having started about one year after acute symptoms developed, but nearly always during that time a very low dose controlled symptoms well. Median duration of PMR is about 6 years.
Everyone will describe a different journey, but one thing is always the same for all of us. Tapering must be done slowly, always with care to maintain good control of symptoms. Symptoms, not a calendar, rule with PMR.
If your doctor is concerned about side effects from longterm pred, such as bone thinning or high blood sugar, etc, there are ways to manage most of them, diet and exercise being the key. There's a weath of experience in this community so please ask questions about anything which concerns you.
I well remember the days of trying to keep the pills and supplements straight. My only actual medication was the pred, but I had to take calcium (which can't be taken with pred) and D of course, but for a time also iron, which can't be taken with calcium, plus a few other vitamins which needed to be taken a couple of times a day like Vitamin K2, and glucosamine for my osteoarthritis. But eventually it gets easier and you no longer need a spreadsheet to keep track!
I am concerned however that although your symptoms may not be as bad as they were pre-pred, you are still not enjoying the best quality of life. Best to increase your dose to the level where you last felt really well, hopefully that will be enough, and stay there for a few weeks, then, only after you feel as well as you did when you first began the pred journey start a slow taper which you must pause if symptoms start to creep back. If you allow the pain to take over again, causing a flare, you'll actually end up taking more pred in the end than a slow but successful taper would use.
Thank you SO much for your reply. In response to your question I was at 15mg for 3 weeks before as instructed I dropped to 12.5, then 10 for 3 weeks, 7.5 for 3 weeks and then 5mg for 3 weeks and then 4mg. That was supposed to be for 4 weeks, but my GP said go back to 6mg in response to my saying I had a return of symptoms. 6mg is not preventing symptoms.
There you go! Once Britain woke up there were lots of people who understand your situation. Good luck as you proceed and hopefully the GP will be a good support to you.
I was diagnosed in May this year, put on 15 for 1 wk12.5 for 3 wks, 10 for 4 wks,9 for a mth then 8 for a mth. I am now on DL's 5 week taper of 0.5mg and will do this until I get to 7mg - if I don't get any issues returning. I am then going to settle as we are away mid December for 3 weeks so plan to resume the 5 week taper of 0.5mg in January. I would like to get as low a dose of Pred that I can but am acutely aware from this forum that it may take another year or more to get there ..
That is a totally ridiculous taper in my opinion. Recovery time for PMR is on average a couple of years and it can be a lot longer than that even. Drop 1mg every four weeks till you get to 10mg a day,although some people can go faster and others slower. Then I would go for 0.5mg every four weeks although some people can carry on to around 7mg on 1mg reduction. You should aim for feeling how you did when you first took pred and had that feeling it was working. If you feel rough stop reducing and even increase a bit.
Welcome to the forum. DL and others will be along later with other useful information and advice. Oh dear, yet another Rheumy who doesn't know or understand anything about PMR and Pred. I think your best bet is go back to the dose that worked and where you felt comfortable and then reduce by 0.5mg every four or five weeks. Even if you go back up to 10.0mg that will have a quicker good outcome and give you a better quality of life than your present regime. PMR is not something that can be rushed and conversely, going slower now will help get you to the finishing post sooner.
As others have said, much too fast a reduction - but unfortunately you aren’t the first, nor the last who has a doctor who doesn’t understand the illness. They are more used to prescribing Pred for acute attacks of asthma or COPD not long term for PMR.
I’d be inclined to return to return to 10mg.. get yourself back in track, and then after a month start tapering - guidelines do say from that dose reduce 1mg every 4-8 weeks depending on diseases activity and patients circumstances. As you work and are a carer, you probably need to go slower than many others.
Another reason why you feel so rough at low doses, is because your adrenals have been rushed into working again… they go to sleep at higher dose, and then need to wake up as you get lower. Thats another reason to reduce much more slowly… something else doctors don’t always get. See this -
HeronNS and the others has already written most of what I would write, I won't repeat it.
You are NEVER reducing relentlessly towards zero - you are tapering the dose in a process also called titration to identify the lowest effective dose which is a very different thing. That is mentioned in all the reduction suggestions in the literature but very very few doctors register that bit and insist that PMR has a defined duration and you can use a timetable reduction and get off pred. It fails at some point and patients often end up feeling it is their fault. It isn't - you were programmed to fail by your doctor who obviously doesn't understand the true nature of PMR.
DorsetLady had given you the necessary information to deal with a flare caused by overoptimistic tapering. At present you probably need just under 10mg - that was when the symptoms started to reappear - and it might be 8mg or it might be 9.5mg, you will find out when you taper 1/2mg at a time. Our slowed tapers are approved and used by Prof SArah Mackie in Leeds, who is probably the top PMR expert in the UK. Just in case the GP questions it!
Any time you get stuck - just ask. Always someone who'll answer within a few hours - when we wake up in the UK if noone else was looking in.
Hi, I can identify with what you are going through completely, having followed the exact route - symptom wise. I found that once I had reduced my dose to about 8-7mg I started to feel achy in the joints again and min stiffness, though nothing like prior to starting Pred. I contacted my Rheumatologist via the CNS nurse, you should have been given this contact and should not be going to your GP. I was advised to continue reducing the dose and continue to monitor symptoms. Basically, I did reduce it until I came off Pred completely, and lasted six weeks before I was commenced on Methotrexate, which I have now been on for 18 months, and following my last appt with CNS have just started to reduce. I have not felt as ‘good’ on Methotrexate as I did on Pred, and perhaps will never feel as I did before developing PMR, I continue to have stiffness but not painful stiffness as prior to being medicated. Speak to your CNS and try to remain active, walking and gentle stretching can help to reduce stiffness in the hips and shoulders - which were my main prob areas. Hope this helps. Hang in there, as I know it is difficult when you have a full time job but you just have to keep going and remember how bad it was before diagnosis 😀👍
"you should have been given this contact and should not be going to your GP."
A lot of PMR patients like me, never see a rheumatologist and their GPs deal with their steroid prescriptions and tapering. I am doing this and occasionally disagree with my GP when they try to rush my tapering. I find if I mention this forum, the charity snd Prof. Sarah Mackie they realise I know what I am talking about and let me get on with tapering in a way that suits me.
I intended replying to you but sent my reply to PMR pro in error. I’ll forward it to you:-
you should have been given this contact and should not be going to your GP."
A lot of PMR patients like me, never see a rheumatologist and their GPs deal with their steroid prescriptions and tapering. I am doing this and occasionally disagree with my GP when they try to rush my tapering. I find if I mention this forum, the charity snd Prof. Sarah Mackie they realise I know what I am talking about and let me get on with tapering in a way that suits me.
Almost every PMR patient has a different story to tell and unlike other illnesses cannot be treated following a rigid protocol. Sadly very few Drs know this even Rheumies. My dad had PMR and it never went. I have PMR and am still at 2.5mg after 7 years. I have a good quality of life, have learned to pace myself, have learned loads from others here and now with knowledge and experience am able to negotiate my treatment with my Drs. I may never get off Pred, but many do. So don't be disheartened, slow and steady is the way forward.
I can't tell you how grateful I am to everyone for their replies and for their kindness, fellow feeling, support and hard cold factual information with which to arm myself for my conversation with the GP. With a bit of luck I will shortly be back up to a 10 mg dose and a much slower taper plan following one of the ones you have pointed me to! Thank you also for the reference to Prof Mackie as at the moment it is just me and my GP as the waiting list for an appointment with an NHS rheumatology consultant was so long, in desperation I went private for a diagnosis as I simply couldn't go on any longer as I was. I will suggest to my GP that it would probably be a good idea to try to get an NHS consultant on the case as now I know that this is much more of a marathon than a sprint I think this would be sensible. I will let you know how I get on once again thank you so much to everyone who has posted.
Unfortunately Prof Mackie doesn't do private work. Where are you in the UK? If your GP is helpful and listens that is sometimes better than ending up with a bad rheumy when it comes to PMR - there are a lot unfortunately.
I’m in central London - I’d have much preferred to stick with the NHS, but it was a 19 week wait for an appointment that wouldn’t even have been with a rheumatologist (possibly not even a medically qualified person) just someone to gather information who would then put me on another waiting list….
I have been very interested reading your messages and the comments of others and it really does tally with my own experience and also my desire to reduce steroids quickly which more often than not has led to a recurrence of PMR symptoms. SLOWLY SLOWLY is now my catch phrase. I only seem to be able to get to 9mg and anything below that brings on the old issues once again. It really is a very very trial and error process and I have found very much that the comments and advice on this forum have been helpful. I am currently again back to 9mg having once again tried to reduce to 8mg unsuccesfully
Take a bit of a holiday from tapering for a couple of months or so. You would be surprised how often taking away the stress of your desperation to reduce the dose lets you get lower. And try 1/2mg at a time with a slowed taper if you aren't already doing so. The fact you have flared before will have contributed to your problems now - don't ask me the mechanism or the logic, but it is so!
That may not be as easy as it sounds.- although you can get 500microgram tablets they are expensive… but if you can get 2.5mg tablets you can mix and match with 5mg and 1mg to get the dose you want.
Plus use one of the slower tapering plans we are always recommending -
Please can I ask you if your tapering plan starts at any particular dosage ? eg. if I am comfortable which I seem to be on 10mg and every time I try to reduce this even after a few months to 9mg. I am struggling. , it's just that it says when you are on a low dosage at the beginning of the plan.
No - you can implement a slower tapering plan at any dose.. whenever you are struggling.
What it actually says is -
This is my take on a slow taper -useful for lower doses, if you use Enteric Coated/Gastro Resistant tablets [and cannot get half mg doses] or if you are really struggling to reduce even at higher doses.
— and that’s because more people are likely to struggle as they get lower and there is less ‘spare’ pred.
Would also say you might find it easier to reduce by only 0.5mg a time - plain tablets can be cut or use a combination of 1mg, 2.5mg and 5mg tablets.
I believe starting at 10 mg is fairly standard because that's when every taper is going to be at least 10% (the maximum recommended) and the lower you go, the larger a percentage 1 mg becomes. Tapering can include going down in half mg steps. One of our adages is, "The lower the slower."
People who have difficulty tapering at higher doses (e.g. between 20 and 10) can use the slow taper methods as well. Another adage: "It isn't slow if it works."
Get a pill cutter is the easy answer. Not for enteric coated tablets but they come in 5, 2,5 and 1mg anyway. For plain atabs, cutting a 5mg may be easier and make up the total dose with a mix - 5 + 2,5 + 1s as required
As PMRpro has said, get a pill cutter. They are available in chemists shops for usually less than £5, and I've found mine to be invaluable when it comes to splitting Pred tablets. If I'm careful I can cut a small 1mg Pred tablet into 4 pieces, so that I can use a 0.25mg piece as part of a reduction dose, such as 3.75mg.
Regarding reducing and failing to reduce. I've recently put my dose back UP to 4mg per day after spending over a year at 3mg per day. I found that during the year I was on the lower dose, I gradually lost all my energy and strength. I almost lost the will to live in the end, and that's what prompted me to increase my dose once more.
Since doing that I've regained a lot of energy and strength, and am now itching to get out and do things that last year I couldn't have managed at all. So for me Quality of Life trumps reduction in dosage, and I don't care if I have to take Pred till my dying day, I'd rather have a life than an existence.
Oh, and I've been on Pred for 14 years now and counting. So although your journey will be very different from mine, don't expect to be off them too quickly, but of course only time will tell.
Thankyou it's very encouraging to read your post!! I am quite fast coming to the conclusion that quality of life (I am aged 71) is much more important than this constant battle with reduction of steroid use. I am actually already feeling less energetic and tired out coming down from 10 - 9mg. which is exactly what happened last time, but I want to try and soldier on for the time being . I just seem to try to go below 10mg and everything falls apart !!! I have got a pill cutter btw. Oh yes esomeprazole, I am on that too. !!
A lot of good advice has been given to you about tapering so I won’t repeat it. I notice you mention digestive issues, have you been prescribed something to deal with the stomach problems sometimes caused by steroids? GPS usually prescribe something such as Omeprazole when they put you on steroids. I recommend asking your GP to prescribe them if they haven’t already done so.
Thanks so much - have just started Omeprazole so hoping that will help - and my GP has said I can have it twice a day if need be, so I’m cautiously optimistic. I’m also off to find a pill cutter!
Well - I promised an update, but I have had developments rather more quickly than I expected. I woke up on Friday morning right back where I started before I ever embarked on treatment- very very stiff, in a lot of pain and it a real struggle to move. I called my surgery, spoke to the emergency doctor and am now back on 10mg - thank heavens….. He is suggesting I taper after a week…..but I have decided to save that conversation for my appointment with my usual GP later this week as having ended up with a full flare I intend to go far more slowly from now on and armed by you kind advice and Dr Mackie’s name I have my arguments ready !
Well I wouldn't taper after a week - make sure you feel fine first. But when you do, do a proper taper from 10. What you have done is a perfect example of how to titrate the dose - you know that you need something between 10 and 7.5mg on the rough pass by, now you do it gently. Only flaw was you should have gone back to 10mg when the niggles started at 7,5, then you wouldn't have had this painful and upsetting hiatus.
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Good luck as you proceed and hopefully the GP will be a good support to you. 
What do I do Now?
Help, not sure what to do next!
Not sure what is happening but............
Tapering - or not!
