PMRGCAuk

Thank you for advice resulting in sig+ difference

Last month I was in trouble and for the first time since pre diagnosis was in despair. The fatigue hit big time, sleep pattern erratic, lethargy etc. Going to bed at 6am and missing daytime asleep I had become nocturnal with no energy whatsoever when I was awake to do anything. So I turned to my virtual friends here!

I decided to take the advice of taking pred early morning since I was awake at this time! Started at 5am, then 1am and now taking regularly at 10pm. What a difference! Now back in work part time, doing home decorating projects ( albeit slowly), walking dogs, and most housework tasks - not all at once obviously! Most significant is that I am able to get out of bed most mornings without knowing I have PMR.

I can only conclude that whilst the pred is being absorbed in the system was when I felt most tired. Taking this at 9am meant I was losing my mornings more often than not. By taking pred at 10pm absorption happens whilst I am now asleep. By 8pm my body does remind me meds are due, but this is small price to pay.

As a result I have finally managed to start tapering as well from initial dose (June 2017) 15mgs to 13.5mgs. Not at lot but better than nothing!

Thank you all so much for your invaluable advice and support. I am no longer in despair thanks to you.

11 Replies
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How interesting. We mustn't be afraid to experiment. Also it can all change and you need another adjustment.

Glad everything worked so well for you.

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You aren't the first person to have experienced this - so pleased it worked for you. A study suggested taking it at 2am was optimal - but who wants to wake up then, you might never get back to sleep!

Out of interest - what does your GP think? Have you 'fessed up? Some of them are terrified because they are taught taking pred at night suppresses the adrenal glands more. So it might for short-term use - but we aren't short-termers, we are here for the long haul. We need what works best.

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No I haven't 'fessed up but will on next appointment. Will be interesting to see / hear response.

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I made the switch from morning to 10pm, delayed release, early on. It is available in the US under the name of Rayos, in Europe it's called Lodotra. I think it works for me because the Pred is on board before the cytokine dumping, so less inflammation build up. I had been awakened by the pain of the dumping/inflammation so I experimented taking 5mg in the middle of the night when I went to the bathroom.

When I reported the improvement to my rheumy and requested trying the delayed release Pred, she agreed. The delayed release formula actually kicks in between 2-4am.

In the UK there is an enteric coated formula that may work much the same as the delayed release Pred. PMRpro posted about it in comparison to the delayed release Pred a month or two ago.

I too sometimes feel more achey in the evening. Not consistent though. Not a problem since by 9:30 I'm settling in with the snack I'm supposed to take with my 10pm delayed release pred.

Glad the switch is helping you.

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Just in case anyone doesn't know - Rayos/Lodotra is not available on the NHS in the UK. If you want it, your GP may provide it on a private prescription, which they can issue but may NOT charge for doing so.

It will cost you about £26 per tub of 30 tablets, irrespective of the tablet size (it comes in 1,2 and 5mg) which means it will cost you up to IRO £100+ per month depending on the dose.

I would seriously consider continuing to pay for it (at my current low dose at least) if I returned to the UK. I would certainly experiment with enteric coated used in the same way.

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I take enteric coated at bedtime (midnight), w yoghurt, and it seems to work ok for me. Experimented w timings first, and found that best.

Still don't always sleep well, but never did.

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My meds are mixture of coated and uncoated. 1mg and 2.5mgs coated, 10mgs uncoated. Working for me at present but again another discussion point for next appointment.

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Marilyn I take my Pred at 9pm for the same reason that I can function well during the morning through to about 3pm. Am on 29/29.5 Pred tapering really slowly thanks to Dorset Lady. Have fessed to my Dr who not worried. Also to Consultant who was surprised and said it was out of synch with natural body clock. Rarely have sleep problems these days. However the Pred doesn't last 24hrs for me and start to feel out of sorts from 5pmish. Was diagnosed GCA/PMR Nov 2016.

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PMR is not in synch with body clock - the pred is a medication, not as a replacement therapy at this stage...

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Thank you for your reply. We are all so different in our response to steroids. Didn't really understand what she meant but have ignored it as 9pm suits me.

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Quite...

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