1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Medication carryover.

Posted , 8 users are following.

paul45653
paul45653

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

18 Replies

  • ptolemy
    ptolemy paul45653

    Posted

    It really depends on you. Some people it lasts less than twenty four hours and they find by taking it in two lots solves the problem. Some people it lasts more than twenty four hours. Have you tried taking it at a more convenient time to you and see if it works OK? 
    • paul45653
      paul45653 ptolemy

      Posted

      Right ptolemy, Ive started taking it at breakfast time with no bad effects so far and if nothing else gets me up during the night I'm able to sleep through which is a blessing.
    • ptolemy
      ptolemy paul45653

      Posted

      That sounds like a good move Paul. I hate getting up early, I am a night person. I hope it all goes well and you can now have a good night's sleep.
  • EileenH
    EileenH paul45653

    Posted

    Pred remains in the body for just a few hours after it is taken. Its half life is about 2 hours or less (the time for the blood level to halve). However, the antiinflammatory effect lasts for 12-36 hours, depending on the person.

    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
      paul45653 EileenH

      Posted

      Thank you Eileen. I am still a bit stiff in the morning, so maybe a different schedule is called for to insure there is some effect carrying over. For sure it will call for some experimentation.
    • margaret22251
      margaret22251 EileenH

      Posted

      Good morning Eileen, do they not give Lodotra in England instead of pred, as it seems you can take lower doses of it to make it work.

      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
      ptolemy margaret22251

      Posted

      Lodotra is a form of pred, prednisone. It is available on NHS prescription in UK for RA, but only on private prescription for PMR.
    • EileenH
      EileenH margaret22251

      Posted

      And since it is on private prescription it is megabucks! The label on my bottle says 28 euros (same price for 1mg, 2mg and 5mg)  and depending on the dose you are on you need between 1 and 3 packs per month. There is supposed to be a trial for PMR in the UK but I can't see it happening - and anyway I seriously doubt NICE would approve it as being value for money. Even if they did, GPs wouldn't prescribe it at that price compared with a fiver for pred for a month.
    • ptolemy
      ptolemy EileenH

      Posted

      I notice that a lot of the Primary Care Trusts are recommending against Lodotra for RA based on cost, so I should imagine even if it were ever passed it would be a fight to get it!
    • EileenH
      EileenH ptolemy

      Posted

      Exactly what I have said from the start. I'm staying here...

      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 smile

    • ptolemy
      ptolemy EileenH

      Posted

      I so agree. You could also argue that you could just take Lodotra and forget Methotrexate, PPIs etc etc which must add to the cost, apart from the fact that PMR patients could have a better way of life. The trouble is NICE seems to look at the cost of just one thing at a time and do not seem to use basic common sense. It is like buying a really cheap car that does three miles to the gallon. 
    • EileenH
      EileenH ptolemy

      Posted

      Exactly. Ordinary pred costs maybe £5/month, so does the PPI - then you add the dispensing fee for each - but they didn't take that into consideration when they "banned" enteric coated pred. Which were 1 tablet and didn't need the PPI - 1 dispensing fee and better compliance because fewer tablets. At the time enteric coated were more expensive - not any more, they are about the same price. 

      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
      ptolemy EileenH

      Posted

      NICE always reminds me of those Nice biscuits which I have always hated!
    • EileenH
      EileenH ptolemy

      Posted

      I didn't mind them but they definitely weren't my favourites! It was those bits and they had a strange aftertaste I always thought. 

      Hmmm - more parallels...

    • ptolemy
      ptolemy EileenH

      Posted

      I don't like bourbons either! Should NICE change their name to BOURBON? Bit of Useless Rubbish Bit of Nonsense?
    • EileenH
      EileenH ptolemy

      Posted

      Now there's an idea - but i'm sure it would upset the Bourbon lovers...
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.