Medication carryover.
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Lets start over. From older threads, there is an optimum time to take our pred. However the longer we are on it, the more of a task it becomes, especially the early morning target. My question is simply does the pred dose last longer than 24 hours so we can be a little sloppy in our timing without starting a flare etc? Local chemist was only interested in getting back to his phone and quickly said 24 hours and you must take next dose. My opinion is that there is a level in your system all the time if you have been taking it every day. This level will make up for any change in timing.
Paul
0 likes, 18 replies
ptolemy paul45653
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paul45653 ptolemy
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ptolemy paul45653
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EileenH paul45653
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I am a 36-hour person and for some time I took a double dose of pred every second day, quite successfully, as this is a recognised way of taking pred to reduce side effects. It isn't felt to work so well for PMR and definitely not for GCA.
As ptolemy has said, some people are 12 hour people - they often do better taking say about 2/3 in the morning and the rest in the evening. This gives them a good day and avoids morning stiffness.
So no, you don't have to be accurate to half an hour or so - it isn't going to cause a flare. It is perfectly OK to fiddle about with how and when you take your dose as long as the changes aren't too big at one go and you may find something not quite so traditional works better for you. One lady was told by her GP to try taking her dose at night - she had funny dizzy spells during the day after taking her pred. They then happened at night (maybe) when she was asleep so she didn't notice and she had no more wobbly legs.
I have a superb answer: living in Italy I can have Lodotra (Rayos to the US) which you take at 10pm and it releases at 2am, achieving the peak blood level at 4am. The result is no morning stiffness and, it is hoped, a lower dose is needed as it has less to do. I do notice that when I take it late (as tonight will be) I am a bit stiff in the morning - but nothing serious. I think it is brilliant - but one gentleman on this forum said he found it was rubbish. Each to his own.
paul45653 EileenH
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margaret22251 EileenH
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I get up in a morning and the usual neck and shoulders ache, but i could not wake during the night to take my pred so Lodotra sounds ideal.
ptolemy margaret22251
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margaret22251 ptolemy
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EileenH margaret22251
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ptolemy EileenH
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EileenH ptolemy
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But seriously, it does seem you can often manage on a lower dose to get the same effect which you'd think might be a plus point given how scared they are of pred and will use any DMARD they can think of to try to reduce the dose. What REALLY gets me on my soapbox is the research people who are trying the monoclonal antibodies for PMR - tocilizumab costs well over £9,000 per year. That is just the cost of the drug. In the UK it has to be administered every 4 weeks in a hospital which adds significantly to the cost. So you'd think that compared fairly well with a bit over £60 a month, a mere £720 per year, for Lodotra (which is the maximum cost up to 15mg). Particularly since the side effects of monoclonal antibodies can be quite breathtaking.
I've been saying for the last 5 years they need to work on how best to use pred and not waste a load of money on a therapy that is never going to be approved for PMR in the current climate for an illness that is not life-threatening (PMR isn't though GCA can be) and which they know responds fairly well to plain bog standard pred.
Bah!!!!!!!!!!!!!!!!! Though to be fair - one group is just starting to do that
ptolemy EileenH
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EileenH ptolemy
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Now they're pontificating on things that NOTHING to do with them IMHO. How on earth did they come up with the acronym NICE?
ptolemy EileenH
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EileenH ptolemy
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Hmmm - more parallels...
ptolemy EileenH
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EileenH ptolemy
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ptolemy EileenH
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