How much pain is reasonable?

Diagnosed with PMR in July 2015, I was started on 15mg of prednisone. I have used the DSNS regime to reduce to 8.5mg which I take once a day. However, before I take the pred I am always in pain - neck, back, shoulder and rib pain.

I have a general l question really - is the point of the pred to keep people painfree? Or is it better to keep reducing and have some pain?

Might it be better to split the pred and take twice a day?

Or increase it to keep the pain at bay?

Or both?

I just want to get off the press asap, really.

Thank you in advance for the fab advice I know I'll get on this excellent forum😊

16 Replies

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  • Hi Susie,

    Sorry to hear you're having problems. The Pred should keep you almost pain free, not necessarily completely. Most people have some pain in the morning before they take their dose, so you could try splitting it, taking one third (2.5) in the evening and two thirds (6mg) in the morning to see if that helps.

    You don't say how long you've been in pain, if it was okay at 10mg say, then maybe that is the level you should return to - it may be that you've dropped just below the level the Pred had the inflammation under control. If so, you need to go back to that level to enable it to do so again, or maybe slightly higher. Then stay at that level for a while before you try reducing again. Some clinicians recommend staying at 10mg for a year, not sure how many patients do that in practice, but a few months might be wise.

    You may want to be off Pred asap, but unfortunately it doesn't work as simply as that that, the PMR will run its course, there is no cure only containment! So you have to reduce slowly keeping the inflammation under control. For some people that takes longer than for others.

    You could try splitting your dose for a week, if things don't improve then you'll have to increase - sorry! But don't go on ignoring the pain, it will just get worse.

  • Susie, definitely agree with DL. Much that we all wish that the "point of the Pred" was to"keep people pain-free", in reality it is just designed to get the inflammation that causes the symptoms under control and keep it there. Only a few very lucky people find that Pred renders them pain-free along the road to remission. If we are not one of those lucky few, we have to help ourselves and find the best way to manage our symptoms that causes us the least pain. Whether that is by splitting the dose and taking two-thirds in the morning and one third in the evening, you will only know by giving it a try. Of course, if you aren't taking sufficient Pred to keep any lurking inflammation under control at any given time, then there will be pain, plus you run the risk of a full blown flare.

    If ever you find that after reducing from one dose to another results in returning symptoms after a week or so, then you have to question yourself as to whether you felt more comfortable at the previous dose, and if necessary return there for a while. I was someone who had raised markers of inflammation at diagnosis and considered myself lucky in that they mirrored my symptoms through the years, so being a very useful guide along with those symptoms as to whether to reduce or not. So do get those ESR and CRP blood tests repeated if you are also someone who had raised markers at diagnosis.

    We all want to get off the Pred "asap" but you really do have to change your mindset, difficult as that may sound - once we accept that we are in it for the long haul, it is much easier to manage the wiles of PMR, and far less stressful....and we all know that stress is counter-productive to our recovery.

  • The point of the pred is to keep you at the same level of pain/stiffness you achieved with the starting dose. You may be "pain-free" or you may never achieve that - but you are looking for the best you can achieve by having the right dose and using it optimally.

    You are reducing not to get off pred but to find the lowest dose that will achieve that. If you go below, all that will happen is that the daily dose of inflammation will not be cleared out and the residual inflammation will build up over time and you will eventually have a full blown flare.

    Every morning your body sheds a new supply of cytokines, the inflammatory substances that cause the inflammation and pain and stiffness of PMR. This happens about 4.30am - and the longer after that time you take your morning pred, the more they are able to get to work on your body. The ideal is to take the pred at about 2am - then it is there, ready and waiting at its peak level in the blood stream and they never get to cause trouble, since it takes about 2 hours to reach its peak. Many people wake early, take their pred and settle down for another couple of hours - by which time the pred is absorbed and working and you are able to get on with the day. Some people take a small part of the dose before bed and it has them pain-free in the morning. Some people take all their dose before bed and it works all the next day as well. No-one can tell you which is the ideal for you, you have to experiment a bit to find out. Doctors may tell you to take it all at once at this time or that time - there are reasons for their beliefs but if that doesn't achieve the best result for YOU then it isn't the right approach for you either.

    Everyone wants off pred - it wouldn't be natural not to. But the reality is that pred is what is between you being stiff and in pain and having a decent quality of life. There is no virtue in taking a dose that is too low and which doesn't clear out all the inflammation - like a tap dripping into a bucket eventually it will fill up and overflow. As Celtic says, if you are a person whose blood markers, ESR and CRP, show something then you can see if the inflammation is increasing and the possible cause of the pain. Mine have never shown anything - ever. If I'm having a flare, for whatever reason, the pain and stiffness returns and then gets worse.

  • Thank you for all this wonderful information

    As these little devils come out at 4.30a.m would I be better off taking preds before that time or as near to it as possible?

    Don't think I could eat my breakfast then,but suppose I could take them with yogurt.

    Your thoughts on this would be greatly appreciated

    Best wishes

  • As I said above - the ideal time to take plain white pred would be 2am - and I do know a few people who have done it with very good results. Otherwise, the sooner after 4.30am you can take the pred the less discomfort will develop and the quicker the pred will have a good effect.

    Some people take a small amount with yoghurt or milk before going to bed and find that leaves them well able to get going the next morning and they then take the rest of the dose with their breakfast. It's fine to experiment a bit!

  • Hi Pro, I have a short question. I was taking pred at 4:00am. Was getting very sore early evening..8:00pmish.... I did this for months and months. So I got a bee in my bonnet and thought if I took it at 5:00-or 6:00am maybe I could be more pain free later in the day. It worked for awhile ( a few weeks)...now I'm quite sore (I am also tapering from 12mg to 11mg on the slow method). After reading your response above I'm wondering if I should return to the 4:00am dose. I feel like I have had a pretty tough workout, which I haven't, with all the main muscle groups hurting. Any advice? Thanks in advance for your time! Gail. I've had PMR for 20 months and am 64 yo and was very very fit when I was diagnosed.

  • That sounds as if you are teetering on the edge of flare - either because your dose is just too low with the reduction, or because the activity of the disease is increasing, or because you are trying to do too much. No real way of knowing which though from what I know.

    It also sounds as if the anti-inflammatory effect of pred only lasts about 16 hours for you (it can be 12-36 hours) and possibly you might get a better result by splitting the dose, perhaps 2/3 in the morning and the rest later to carry you through the night.

  • I appreciate your reply. I live in the US and have experienced Dr's wanting to reduce as quick as possible. I fired my first Dr who was the head of the Rhuematology Clinic. My new Dr and I have agreed on the slow method. I had a huge flare while doing the slow method, going from 15mg to 10mg in 1 mg increments. Then up to 15 mg again after being diagnosed a year earlier. That in itself is very depressing! So now I am slowly reducing and having issues and have an appt w/ Dr in about 4 wks. We have danced around Methotrexate and I don't want to take it. She thinks I should. Saying Metho might have less side effects than Pred. I have a feeling at the end of Sept,when I have my appt,the discussion will be at the front of our conversation.

    Is it unusual to not be able to get down to, lets say,10mg, for a couple of years? Does the disease sometimes just sit and stay the same for a time? Sure feels like it to me...like it is rumbling right under the surface. I do know that we are all different, but have you had experience with others of not being able to get to just 10mg? Thanks again for your advice!

    Gail

  • It took me 4 years to get below 10mg. I then got down to 4mg for a couple of years - and had a flare requiring a return to 15mg in January. I'm now down to 10mg but it is bubbling away, 9mg is uncomfortable for even one day at a time. There are others on similar doses for long periods.

    Some people absorb as little as 50% of the dose, others 90%. If we are 50% people we will need to apparently be at a higher dose to get the result. MTX may have fewer side effects - or it may not. And it doesn't replace pred, it just MAY allow the dose you take to be a bit more effective. I wouldn't want to try it - but I suppose it might be worth trying. If it has no side effects and helps, all well and good. I have a friend for whom it has been helpful but she still takes pred.

  • From what I heard they always give metho and pred together. And if they can taper down they get to get rid of one or the other. I have never asked which one. But I will find out! Thanks for your feedback. I feel better and smarter now! Gail

  • I also found I was never really pain free -- and even once I fully came off preds on the OK of my rheumatologist after two years, I still had some stiffness for a year afterwards (but the awful pain had gone). I also had some odd less common pains, like a flareup of my knees and also that weird rib pain (which also continued for months even once i was ok'd to come off preds). Kate's book notes the very slow recovery for many even once people come off preds.

    It is so frustrating to be on preds but nice and easy is what gradually dampens down these conditions. An orthopaedist friend who also had PMR told me that it was like putting out a fire ... and if you do reductions too quickly, the flames are not dampened down enough and re-ignite. That was a helpful visual for me!

    There is a new form of preds that is time released and was trialled with people with rheumatoid arthritis very successfully. I don;t know if it is yet openly prescribed but it sure makes a LOT of sense to me to have time release preds to more naturally match our body's production of cortisol. I believe it was to be trialled for PMR. I do think splitting it helps some people a lot.

    If the pain is mostly morning stiffness and pain, then you are probably doing OK (lots of us have/had it) but should really stick at 8.5 til you aren't having a lot of pain before reducing again. I have hardly heard of anyone who took preds and then was pain free for the whole course of this illness. I was only really pain free for the short time I was on 15 and then 12.5.

  • You mean Lodotra/Rayos - it isn't time released in the usual sense of the word. It has a special coating which takes 4 hours to break down in the gut providing it was taken within 3 hours of food. You take it at 10pm before bed, it then releases the entire dose at 2am so that the peak blood level is reached at about 4am - just before the cytokines are released so it is ready and waiting to act on them. You can mimic that by taking ordinary pred at 2am - that is why it was developed after studies showed that was the optimum time to take pred to minimise morning stiffness, or you could take enteric coated pred in the middle of the evening and it will be released by about the same time (it takes 6-8 hours depending on the person).

    Lodotra (in Europe), Rayos (in the US) is approved for RA in the UK but a directive has said not to use it as it is too expensive and it is not approved for PMR at all. It is used in Germany for PMR and Italy for RA at least. I get it off-label in Italy as I cannot take the only other alternative, Medrol, and in the UK it is only available on private prescription where you pay for the entire cost yourself. I do know of someone in the US who is using it - I have no idea whether their insurance covers it or not. There was mention of trialling it in the UK for PMR - that's been shelved as far as I know.

    It is EXPENSIVE compared to ordinary pred - a tub of 30 pills costs just under 28 euros here in Italy. It is the same price whether it is 1mg, 2mg or 5mg pills and you (obviously) need up to 3 tubs a month depending on your dose (to combine them to get the required dose), so up to 85 euros or so per month up to 15mg. even more if you need above 15mg/day.

  • Thank you all so much for this excellent advice. I think I need to experiment with the timings of my prednisolone - and possibly consider a small increase - until the pain reduces to where it was a month or two ago i.e. when it was manageable.

    I will be in Italy in May, PMRpro, would I need a prescription for the Lodotra? or could I buy tabs over the counter, I wonder?

    Thank you all again.

    SQQ

  • You have to realise that preds are not really a cure, they are more a pain reliever so my thought is that you have reduced too quickly and are not keeping pain at bay. What is the point in being in pain? There is no point and only gradual reduction of prednisolone will tell you if the pmr has burnt itself out. Then you can keep reducing and stop.

  • Thanks, Sheribrim. Good advice.

  • I dont have to have PMR to address this - even though I do. Pain is completely subjective. What someone says is painful, is painful. We all have different levels of "acceptance" which are as varied as the human race. Don't try to make your pain level match someone else's. Trust yourself. Be honest. But don't let it victimize you, either. They often compare childbirth as the ultimate measurement of pain. I was a Labor and Delivery nurse for 7 years, and I have assisted many many women in that process. And I can tell you that they, too, differed greatly. Do not let any medical professional measure your pain. They cannot. Don't feel guilty for your pain, either. It is what it is. You can rarely control that - but you can control how you manage it, how you react. I learned early on that I am a lightweight - that pain bothers me more than most people, and my tolerance is low. (I could never stay at work with a migraine, for instance; or while vomiting. That is not to say that people who do hurt more or less than I do.) So I work hard to head pain off at the pass. I respond quickly when I feel it coming, to lessen the impact. I think ahead to prevent things that I know often trigger it, etc. The short answer here is that no one can tell you what your limits are. Only you know that. Be well.

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