I was diagnosed in September and put on 20mg which I have got down to 13mg - I take this 5mg at 10pm and 8mg at 8am but when I wake up in morning I still have very painful pain in the bicep/Tricep area of my arms and my hands until say mid day when it starts to subside- had to take paracetomol the last 2 days because of the pain. I am 52 and used to go to the gym and exercise for at least an hour most days but now can only do bits and some light swimming. Don't really want to increase the pred as my aim is to get off it but my question is should I be in this kind of pain or should I increase the pred?

Thank you for any assistance.

14 Replies

  • I wondered if maybe you have been overdoing it a bit since you started pred? It tends to make us able to do things we couldn't for a while and the temptation is to do too much, which doesn't allow our poor inflamed tissues to heal.

    Another suggestion might be to take the larger dose at bedtime and the lesser one when you get up. Some people have tried that.

  • Thank you HeronNS for the advice, will try your suggestion with the others and see what works best.

    Thank you

  • As long as the underlying autoimmune disorder that is the cause of the symptoms we give the name PMR is active you will need pred to manage the symptoms. Nothing you can do will speed that up, PMR came when it wanted to and it will burn out and go into remission when it wants to. It doesn't matter how much you want or try to get off pred - if you still need it, you will develop symptoms when you try to go to too low a dose.

    What was the last dose you were pain-free at? How is your evening? How did you choose the current split? It may be that you would be better taking your dose all in one - not everyone benefits from splitting the dose. Or you might be better waking earlier and taking the morning dose at, say, 6am and settling down for another couple of hours by which time the pred will have started to work and the morning pain will be less. Or, if you go to bed later than 10pm, you could take the pred at the last minute - and you could experiment with the split to find the best for you.

    A study found that the optimum time to take ordinary white uncoated pred to avoid morning stiffness is at 2am - the peak level in the blood is then at 4am, shortly before the cytokines that cause the inflammation are shed in the body. The sooner they are combated, the less the level of inflammation that develops. I would say that you are allowing too much to develop by 8am - so the 5mg at night is being wasted.

    It is also possible that the upper arm pain is either due to a shoulder/neck problem that is pinching/irritating nerves or you are doing something during the day that is overusing the muscles. The management of PMR is done not only with pred but with lifestyle management - it is up to you to try to avoid the triggers for the problems you experience. You have a choice: you can do things and need more pred or you can adjust what you do and manage with less pred. What you won't do is manage with too little pred for the activity of the disease at present. It doesn't mean you won't get to a lower dose - just not yet.

  • I was pain free at 15mg having started at 20mg. I chose the split just from reading the forum and trying to see what works best, evenings are normally ok to be honest mainly mornings the problem especially recently. I Have read your post and the others with interest and just maybe I am trying to reduce too quickly and just have to accept the pred and not worry about the side effects which luckily so far I have not had any. I have always been uneasy taking any tablets in my life but realise I need the pred but having read the leaflets and the forum was really scared of taking them.

    I cant thank you enough for the advice and the rest of the posts on the forum and will take on board what you say.

    Thank you so much.

  • if you are finding the symptoms are creeping back it probably means you are just lightly below the ideal dose - even 1/2mg can make a noticeable difference, 1/4mg too little will allow that tiny bit of excess inflammation to build up and eventually you will notice it.

    You WILL get lower - just not yet. If you aren't suffering any appreciable side effects accept that gratefully and be patient. It will make life a lot happier!

  • Thank you PMRpro I will increase I think as in severe pain this morning in arms.

    Thanks again

  • If you have the attitude I want to get off Pred you will be in pain for longer. Taking pred in the morning is the recommended way not splitting the dose. Take enough to stop the pain then stay on that dose for a month or so then try dropping no more than ten % at a time if the pain comes back stay on the last dose that did not cause pain the wait a while then try dropping again. I have been trying to get off pred for 3 1/2 years, been up and down on dose having flare ups caused by dropping to fast on doctors recommendation. I am now following above advice. Once you get your head round to it being a long slow road, life will improve for you, but not until you have accepted the long term treatment needed to get free of PMR. All the best I hope you and I get there in the end. PS I have found no relief whatsoever with any other pain killing drugs.

  • Thank you Paulst955- again such invaluable advice and will use your suggestions and the others to adapt what I do.

  • Hi r-o-y-1

    I was diagnosed at start of November, put on 15mg Prednisolone and reducing now .5mg at a time, like you am now on 13mg and feeling ok.

    Just like you, I did feel unable to function reasonably until mid-day so ...

    Quite early on I started taking ALL my dose before retiring to bed for the night, at around 10.30pm (despite my GP insisting morning was best !) .

    Right from the start of the late night dose, I wake up feeling good, no difficulty getting out of bed and can function well but ... I always relax in the afternoon for a couple of hours.

    Maybe try that and see how it suits YOU x

  • Thank you so much Polylinc for taking the time to reply- I will try this and see how it goes.

    Thank you

  • Hi R-o-y-1, just wondering how you are feeling these days?

  • Hi HeronNS, I now take all my dosage just before going to bed and I definately feel better very little pain in the morning now and the dosage seems to last most of the day- thank you for your concern and advice it is greatly appreciated- I think this site is brilliant as gives so much great advice- thank you everyone. I have also accepted it is not a race to get off pred and that makes me more settled to take it a bit slower.

  • Nice to hear you are doing better. I know what you mean - it does take a while to submit to the reality that we may be in this for the long haul. Slow and steady! All the best.

  • My guess is you have reduced too quickly. I take the whole dose at 8 each morning and feel good then all day. You should not need to spread the dosage.

    If you take too small a dose the pain won't go and if you reduce too quickly it returns. Don't be in a rush and go back up if you need to do so. I tried to reduce too quickly I think, it can take months just to reduce 1 mg. be patient.

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