The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Circadian rhythm / sleep pattern after long term corticosteroids

Discussion in 'Sleep' started by Thinktank, Nov 26, 2015.

  1. Thinktank

    Thinktank Senior Member

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    I'm posting this for my girlfriend who suffers from SLE and has been on prednisolone for nearly 2 years now.

    She never had any problems sleeping (except multiple awakenings caused by polyuria), even on high doses of prednisolone she was able to sleep whenever she liked to.
    Now that the prednisolone has been tapered down to 10mg / day she's starting to have problems.

    She falls asleep early around 21:30 then wakes up around 00:00 - 00:30.
    After this she can't fall back asleep or has bursts of very light sleep until 04:00 - 04:30
    Then she sleeps until 08:00 when i wake her up for breakfast. After breakfast she takes her 10mg prednisolone and goes back to sleep until 12:00 - 12:30. (how she does that goes beyond me, i personally bounce off the walls from a tiny 2mg dose.)

    This started only two weeks ago after she dropped the dose from 12.5mg to 10mg so she hasn't tried much yet for intervention except munching on salty potato snacks. Eating something carbohydrate dense around midnight does help her to fall back asleep until 4 or so.

    Her adrenals are almost completely shut down, labwork 2 months ago showed cortisol and DHEA are both very deficient.
    Is it possible that her adrenals are coming back to life (at the wrong time of day)? Releasing cortisol at times it shouldn't, hence causing her sleep problems?
     
    rosie26 likes this.
  2. Woolie

    Woolie Senior Member

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    Hi @Thinktank, I have little in the way of explanation to offer you. But I'm wondering if perhaps the step down was a bit steep? I was on pred for a while (around 9 months), and I tapered down 1mg every two weeks after I got below 15mg.

    The other thing is, if its a temporary effect of stepping down the dose, then it might be possible to get some sleep meds, if your doctor's okay with it. Might be a better option health-wise than the sleep deprivation.

    I know, that's not really an answer to your question....
     
  3. Thinktank

    Thinktank Senior Member

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    Thanks for the suggestion Woolie, but sleep meds are out of the question.
    I don't want her to risk physical dependence to sleep meds because of a temporary problem.
    She doesn't feel sleep deprived if she sleeps the way she does now, and i don't mind it.

    Yes i agree with you it's a steep drop but she handles it well, she had some joint pain and fatigue the first few days but that's mostly over now.
    From the 10mg downwards she will reduce the dose by 1mg cuts.

    So you tapered the prednisone in 30 weeks from 15 to 0mg? How are your adrenals doing?
     
    rosie26 likes this.
  4. Woolie

    Woolie Senior Member

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    Not there yet, actually, still on a low dose. I don't really know how my adrenals are going, not been tested. As for symptom, its always hard with ME to know what's the effect of stepping down, and what's the ME (mine's very fluctuating).
     
  5. barbc56

    barbc56 Senior Member

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    I would get a referral to a sleep doctor or a consultation. Possibly from the doctor who prescribed the prednisone. Though the two events happened closely in time, they may or may not be related.

    A sleep doctor may have seen other similar situations. It's important to make sure the doctor has the best sleep certification that are available in your country.

    Good luck. Keep us posted.

    Barb

    On second thought maybe it would be better to start with the doctor who prescribed the predinisone as he/she has probably seen patients who have had similar problems or can refer you to a more appropriate specialist if needed.
     
    Last edited: Nov 27, 2015
  6. Thinktank

    Thinktank Senior Member

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    @Woolie, good luck with the last few mg's. :)

    @barbc56, She will discuss it with her rheumy but the problem is the Dr. will probably offer sleep meds. That's how it goes here, meds for symptomatic relief are given like candy. Doctors here are like pharmaceutical reps and she has seen enough of them.

    The cause of it all is quite clear, her adrenals and prednisolone.
     
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  7. A zombie

    A zombie

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    it definitely does sound like something is going on with adrenals. I cant sleep at night at all. My cortisol is high at night and i have a hard time getting up in the morning, i'm low then.the pred has problem just tanked her adrenals.
    what are her sx, why is she on PRED in the first place???have you considered cannibis oil? i sue this for sleep and it's nothing short of miracle. got me reduced on the crappy rx's too
     
  8. Thinktank

    Thinktank Senior Member

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    @A zombie , She's on prednisone for SLE (systemic lupus erythamatosus).
    We've not considered cannabis oil yet but i'm glad to hear it helps you.
     
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  9. consuegra

    consuegra Senior Member

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    @A zombie

    What type of cannabis oil to you find helpful?

    Chris
     
  10. A zombie

    A zombie

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    just so you are aware lyme can look like lupus and is often misdiagnosed for lupus, just a heads up. she may be fighting the wrong battle... you would not take prednisone if you had lyme disease, it would be bad for immune system. LYME is in all 50 states . I'm not an outdoorsy person at all and i got lyme, it's very common, bt not very commonly diagnosed properly.
     
  11. A zombie

    A zombie

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    indica
     
  12. barbc56

    barbc56 Senior Member

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    Honestly, what doesn't look like Lyme? Are you suggesting that someone go off there prednisone simply based on a conjecture that someone might have Lyme?

    I thought prednisone is given for post treatment Lyme. I'm not a doctor so I may be mistaken about this.

    Barb
     
  13. A zombie

    A zombie

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    lyme look likes everything and anything. And is often misdiagnosed and lupus is one illness it can imitate. Perhaps do some more testing. NO, PRED isn't given post lyme tx.
     
  14. barbc56

    barbc56 Senior Member

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    Thanks!
     
  15. Thinktank

    Thinktank Senior Member

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    A positive update. Her circadian rhythm is back to normal. She still does wake up multiple times at night but that's not too bothersome and nothing we probably can't fix with something OTC.

    The prednisolone dose has been lowered to 7.5mg and with every drop she starts to feel better.

    I'm very glad she didn't go the sleepmed route!
     
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  16. WoolPippi

    WoolPippi Senior Member

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    Great news.
    What do you two think that happened? Might 10 mg of Prednison just have been the point where her adrenals started waking up and were spluttering? Now they're in control again and cannot wait for the Prednison to go away all together?

    I'm still having insomnia and am currently experimenting with small dose of Hydrocortisone just before bed, it seems to calm my system down enough to make me sleep through the night. (my adrenals have stopped working)
     
  17. Thinktank

    Thinktank Senior Member

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    Exactly that @WoolPippi, she's still tapering the prednisolone but blood testing reveals that her adrenals have started producing small amounts of cortisol and DHEA.
     
  18. Thinktank

    Thinktank Senior Member

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    Little update. She's now on 2 mg prednisolone. The withdrawal period has been taking way longer than expected!
    She still has to withdraw slowly otherwise jointpains an insomnia will return. It will probably take another 4 months or so to reduce the dose to 0.

    @Woolie , have you managed to get off the prednisone?
     
  19. Woolie

    Woolie Senior Member

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    Yes, I did get off it, I took it very slowly at the end, a 0.5mg drop every few weeks at the end. I can't say for sure if there were any withdrawal effects when I got below 2mg as my symptoms fluctuate wildly anyway. I'm also unable to say if there were any lasting ill effects from being on it for such a long time.

    One effect the prednisone has definitely had on me is to make me increasingly unresponsive to prednisone. My first ever pred regimen - which involved a starting dose of 40mg daily - alleviated my symptoms for months. I tried it some months later during a major crash - no effect, nothing. I don't even seem to get side effects any more. It used to affect my sleep, but now it doesn't even do that!

    I could probably still get relief from using prednisone, but Id have to go for a higher dose. My doc is not comfortable with that, and I'm not either.

    Apparently, this is a common thing with corticosteroids for the beneficial effects to "wear off" with long term use.
     
    Last edited: Sep 20, 2017 at 11:28 PM
    Thinktank likes this.
  20. Thinktank

    Thinktank Senior Member

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    Thanks for you reply @Woolie and i'm glad to hear that you've been able to get off the prednisone.
    What kind of side effects did you notice if you withdrew the drug too rapidly?

    About the lasting side effects, my girlfriend has noticed thinning of her skin and discoloration of her teeth.
     

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