I’m now in my third week of taking 15mg of Pred having recently been diagnosed with PMR. I’m taking it in the morning at around 8am and have noticed significant improvements in my movements. However I feel very tired and have stiffness in my hands (particularly the right one around the lower thumb). I also have a prickly feeling across my upper back and shoulders.
My questions; does Pred take longer to work for some? Is the dose high enough? Am I expecting too much too soon?
The more I read on this forum the more I see that everyone’s journey is individual. I know it’s early days for me but I would like to know what the experts on this forum think.
Many thanks,
Pangolin43
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Pangolin43
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It sounds to me as if you starting dose is a bit low for YOU. The 2015 Recommendations are for "the lowest effective dose in the range 12.5-25mg"
If it were me, I would ask if I could try a week of 20mg to see if it will get a better result but I started with 15mg and although I had a dramatic improvement in under 6 hours, it improved some more in the following 6 weeks when I was on 15/10/5 each for 2 weeks and stopped. The result of that was that I felt worse than before 6 hours after missing the first 5mg dose. However, I restarted the pred thanks to a GP - the rheumy didn't think it was PMR - and after about 3 months I realised the other pain in hands, feet and hips had also faded over time and was gone.
You might also find you do better if you take the pred as early as possible in the morning - the ideal is 2am so it is at its peak in the blood when the inflammatory substances are shed in the body at about 4-4.30am. The sooner after that you take the pred, the less inflammation has been created and the less the pred has to do. Taking the pred early and settling down for another couple of hours makes all aspects better,
The fatigue isn't affected by the pred - it is a component of the underlying autoimmune disease, a bit like an ongoing flu. At higher doses some people think they are invincible - it is the pred speaking!! Fatigue must be managed by pacing and resting, not thinking you can live life as you did before:
Dear PMRpro,Thank you for your prompt response. I was thinking along similar lines. I have appt with consultant in early May (after I reduce the dose to 12.5mg). I think I will wait until the appt and then it will be really clear what is happening with you symptoms. I imagine there will be no change and it may get a bit worse.
Hello PMRpro.I forgot to ask you about taking Pred at 2am. I can see the benefits clearly but as I am working that would give me a very disrupted sleep. Do you think it’s a good idea to take it before bed? At around 11pm? Or would this not tackle the inflammation at the correct time.
It really is a question of experimenting a bit because everyone is a bit different and has varying sleep needs and timetables. Some people find taking it before bed means their sleep is disturbed, others it doesn't bother at all. Another option is to take the bulk, say 2/3, in the morning and the rest later enough in the day to carry the antiinflammatory effect over to the next morning so you wake without stiffness which makes it easier to get going. The ideal would be for the effect to last 26 hours - but in fact it varies from 12 to 36 hours depending on the person.
My experience was that 15mg pred made me feel drugged. It started at around 11am, 2 hours after I took it. I found it hard to function and couldn’t trust myself to drive. As you say you feel tired, it is possible you are similiar. In the end I took it with or just after my evening meal. Later I switched to enteric coated pred which bypasses the stomach and is absorbed more gradually. I also took it later in the evening. As you know, everyone is different but I never found it affected my sleep.
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