Rayos tablets--time released

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Has anyone found that the time released capsules are better than standard prednisone?

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  • Posted

    Hi Poupe

    During the last three years I tried twice to switch from the regular morning dose of Pred to the bedtime dose of Rayos.

    I was on 10mg pred at the time. The Rayos trials were for three to four weeks.

    Both trials were not successful - I had flares and my SED rate increased.

    Going back to regular Pred settled everything down and my SED rate dropped.

    I have heard from others that it has been successful, but not for me.

    It must be based on the individual.

    Dave 

    • Posted

      i Dave.....maybe it is California since I live in Calif too.   Doctor wanted me to try the time released but so far have had increased muscle arm pain on the same dosage as regular.   

      My issue is pretty pain free until the afternoon  on the regular when arm muscles start to hurt again thus her trying me on time released.

      Just started trying to split dose 5mg morning 21/2 mg afternoon......not working so far.  

      Thanks for responding 

  • Posted

    Hi Dave.....maybe it is California since I live in Calif too.   Doctor wanted me to try the time released but so far have had increased muscle arm pain on the same dosage as regular.   

    My issue is pretty pain free until the afternoon  on the regular when arm muscles start to hurt again thus her trying me on time released.

    Just started trying to split dose 5mg morning 21/2 mg afternoon......not working so far.  

    Thanks for responding 

  • Posted

    It has worked for me.  I take 3 mg Rayos at 10pm at night, then the other half of REGULAR pred (3.5 mg) when I get up at around 8am in the morning.  I've experimented with other ways, other amounts, but this works best for me.  Trouble is, the Rayos is very very expensive for the insurance companies.  But I like that it releases at 2am (even tho I take it at 10pm) so that it kicks in just as the cytokines are getting ready to do their damaging work.

    • Posted

      Thanks for letting me know your experience.  They just checked into the insurance coverage and it is expensive.  Interesting that you switch from the regular to the time released daily.  Something for me to consider.
  • Posted

    The main advantage of delayed release is that you can take them at reasonable time in the evening , say 10pm and have the maximum effect at 2am or so... The same effect can be achieved with regular pills if you take them late at night . I take mine between 12 and 1AM and works really great. I have been doing this for almost 2 years with good success, no flairs, no morning stiffness.
  • Posted

    Hi Poupe, I'm on a mixture of 5mg/2.5mg/1mg gastro-resistant pred (not called Rayos in the UK) which release about 6hours after taking, and plain pred which can be cut to give small doses when reducing.  I'm on 13mg at the moment and take an 8a.m. morning dose of 8.5mg coated plus 0.5mg plain which gives me a little boost mid-morning, then 4mg coated at 9.30pm which kicks in for the 4.30ish release of cytokines. I've found It works for me after a few experiments.

    • Posted

      Gatroresistant pred is not the same as Rayos (which is called Lodotra in Europe and is not available on the NHS, just privately). Gastroresistant has an acid resistant coating so they pass through the stomach and are absorbed further down the gut. Rayos/Lodotra has a coating which breaks down in the stomach after 4 hours releasing the entire dose at once providing it has been taken on a full stomach. You must not take it on an empty stomach or it goes further down the gut in the 4 hours and won't be absorbed.

      But you are quite right - a bit of experimentation with either g/r or plain will improve the morning result and prevent a return of symptoms later in the day.

    • Posted

      Thanks, Eileen, for the explanation of Rayos/Lodotra  v. gastro-resistant pred, I'd assumed they were the same due to their delayed release and didn't realise the former were not released in the gut as my g/r pred is.  Never assume anything!   Much appreciated.

  • Posted

    I think they are - I feel I have no side effects as opposed to just few side effects and have absolutely no problems in the mornings (other than not wanting to get out of bed but that is a different problem!).

    Not wishing to appear dense - but why does she think that time released will improve a late afternoon problem? If you were taking your pred in the early morning it will make it worse - as you are taking the same dose but earlier so that its effect will also wear off sooner. 

    • Posted

      Just had a thought: you are taking it properly at 10pm aren't you? Either within 3 hours of a proper meal or with a substantial snack such as bread and cheese/ham. Having the right conditions in the stomach is important for it to be absorbed properly.

    • Posted

      Hi Eileen,

      Eileen,

      Thanks so much for all your information.  I was just reading your post on how you suggest reducing slowly.   I want to make sure I understand.....when you say 1 day old dose, 2 days new dose so that week you are only taking three pills in a week?

      I can see I was reducing WAY TOO FAST and the pain maybe from reducing too fast rather than the PMR that I have.

    • Posted

      No, it is continuous, don't think in weeks. Get a calendar, to make it easy let's say you are starting on the 1st of the month:

      1st new dose,

      2nd, 3rd, 4th, 5th old dose (i.e. 4 days of the old dose)

      6th new dose

      7th, 8th, 9th, old dose (3 days of old dose)

      10th new dose 

      11th, 12th (2 days old dose)

      13th new dose

      14th old dose (now you are 1 day each of old and new) 

      15th, 16th new dose (2 days new dose)

      17th old dose (1 day old dose)

      18th, 19th, 20th new dose (3 days new dose)

      21st old dose 

      22nd, 23rd, 24th, 25th new dose (4 days new dose) 

      By which time if you feel OK you can probably just stay every day at the new dose. You can start with more days of the old dose between challenges with the new dose. Or fewer - it may well work OK. You don't know until you try.

      If you have one of those calendars with a space for each day you can colour code the days differently, red for the days you will take the new dose, green for the days you still take the old dose. With the plan I've written above you could start on the first of every month and have a few days on the all new dose at the end of the month and start on the new reduction on the first of every month if all goes well.

      Or if it is still a bit hard, slow down and take longer - it isn't a race and it isn't slow if it works.

    • Posted

      Got it.  Thanks again that explanation helped.

      I seem to be so different than others in that my pain is worse in the afternoon rather than in the morning.  Going to try and take my pills a little later in the morning so it will last until the afternoon.  Like others have said everyone is different but these postings are so great from people that are experiencing the side effects and trying to get off of medication.

    • Posted

      I have been splitting my dose since the beginning. I take my morning dose about 5am and my afternoon dose at 3pm. I'm presently reducing to 11mg by splitting 8mg am 3mg pm. Before it was 8 & 4. Works for me. I can delay my pm by 1 HR but for it to kick in 3pm is best.

      Mariane

    • Posted

      Hi Poupe,

      I’m the same as you with regard to experiencing more discomfort towards the afternoons, although I don’t split  my dose (Currently on 14mg down from 50mg initially) and am not on slow release, I believe that is because I also have GCA and the advice is take my  pred in the morning, i take it when I wake , about 7.30. I can deal with the afternoon discomfort, I combine wellness/naturopathic/massage therapy to deal with things along the way, but will only reduce slowly slowly slowly if I feel I  am coping on the last dose. No point in feeling miserable off pred if I can feel somewhat human on it, and continue on with life as best I can. As michdon says, always smiling 😁💪

    • Posted

      Thanks for responding everyone.  Reeceregan so many people said their pain was worst in the morning and yet mine was in the afternoon so wondered if anyone else experienced that.  As many have pointed out decreasing very slowly is the answer and everyone is different so what works for one may not work for another.
    • Posted

      Yes, I think as far as my tapering goes, I will stick to the rheumy’s way ( 1mg every two weeks provided I have no massive setbacks) then all going well, will do the DSNS method Eileen suggested above from 10mg down. I’ve always had good mornings and bad afternoons, but I prefer that to bad mornings and good afternoons. Better still, I’d really love good days 24/7 but those days are but a distant memory st the moment. Working in getting them back though, and will never give up. 💪

    • Posted

      It is a problem we have with the medics - they are fixated on "morning pain and stiffness" but in reality everyone experiences both differently. Some are OK in the mornings, others are not. The one thing that may form a red warning light is if the pain is waking someone early in the night, say 2am, as opposed to after 4.30am as that might suggest it is a different a/i disorder which is often mixed up with PMR because in the early stages the symptoms can be very similar and a very specific form of MRI is required to identify the spinal changes in it - but often they aren't visible for some time.

    • Posted

      I had pain whenever I was still for more than a couple of minutes, day and night.  Now with pred I'm sometimes stiff after a long period of sitting, for example, but I'm usually fine both at bedtime and when I get up, and most of the times in between, so assume my PMR pain control is as good as it gets.  I take pred with breakfast around 8 a.m.

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