Julie Rehmeyer's 'Through the Shadowlands'
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Circadian rhythm / sleep pattern after long term corticosteroids

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

  1. Woolie

    Woolie Senior Member

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    Funny you should say that. My teeth look awful since I started the pred. Just figured it was old age catching up with me. But not skin thinning.

    I don't remember any specific effects when tapering down at the end there. Just more of the usual fluctuating CFS symptoms.
     
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  2. bertiedog

    bertiedog Senior Member

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    Actually I have been on 6 mg Prednisolone since 2003 for adrenal insufficiency and I haven't had to raise my dose but I still get the benefits. I can always tell if I am running low and might need just a tiny dose of hydrocortisone to put me right (2.5mg h/c). I don't have to do this daily but if my adrenals take a hit from me overdoing it then it is highly likely that in the afternoon I will need that top up to get through to the evening without experiencing nasty dizziness or migraine.

    I dose 2.5mg Pred sometimes as early as 4.30 am if I am awake so that I can go back to sleep and then another 2.5 mg around 7.30 before getting up. Around 1 pm I take my usual last dose of 1mg Pred.

    I do have slightly thinning of my skin and I do bruise easily but the benefits massively outweighs those issues.

    Pam
     
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  3. WoolPippi

    WoolPippi Senior Member

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    steady but surely she's reducing. I imagine she manages to have a life with this regime. That life would be unpleasant if withdrawing was at a faster pace. This is the right pace. Compliments!
    I'm also positively cheering to hear that her own adrenals are picking up!

    btw, my insomnia is not helped by cortisone supplementation. In me, the cortisone deficit is caused by the insomnia, not the other way around. It turns out I have colonic problems that I do not notice but my stress-system does. Has done so my whole life, waking me up, usurping my cortison (and progesteron and growth hormone) and eventually draining my adrenals at age 35.
    Now that I'm fixing the colon (low fibre diet + FODMAP + low sulphur diet + low residue diet + low tyramine diet) I manage to sleep through the night. I now get 6 hours instead of 4,5. Promptly I can get by with less Hydrocortisone the next day. I take 20 mg on those days. I need 25-30 mg on days with bad sleep.

    btw2, my DHEA is consistently too low to measure, these years. Couldn't get it up with supplements because it got converted into Oestrogen for which I am too sensitive. I'm taking Testosteron now which gives me a nice boost (and muscle growth)(I take 0.2% solution which is what females need. Men take 2%.) I'm also on daily Progesteron to aid the adrenals. And some monthly to aid my cycle.
    I am very glad to know the hormonal cascade of the adrenals and supplement them as needed. I also take Aldosterone (= Florinef). All based on blood work and symptoms. "Go low, go slow" is the motto my endocrinologist hamers into people.

    Your girlfriend is a shining role model to me for always tailormaking the dosis and keep tweaking it and if possibly lower it, even if it is annoyingly slowly. Thank you for posting.
     
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  4. Woolie

    Woolie Senior Member

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    I'm pretty sure the "wearing of" doesn't apply to doses under 8mg. Its for big doses, designed to whack inflammation.

    Hydrocortisone 1mg is roughly equivalent to prednisone 0.25mg. So in the case of Hydrocortisone, anything under 32mg would not have the same effects.
     
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  5. hamsterman

    hamsterman Senior Member

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    Im considering doing the Low Dose Hydrocortisone in the morning to deal with low morning cortisol levels. I've heard at low doses, it causes pretty much no tolerance, so yes, tapering isnt necessary.

    But I never considered using prednisone in the same manner. I guess it could be done... it would just last a bit longer. Maybe 1mg prednisone in the morning would be a good idea.
     
  6. Woolie

    Woolie Senior Member

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    I don't know about the whole hydrocortisone thing. I can't help thinking that our bodies would just dust their production over time to compensate for the extra, and we'd be back to where we started.

    But I guess there's limited harms in trying?
     
  7. hamsterman

    hamsterman Senior Member

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    From what I've read... at very low levels, the body doesn't compensate. I remember seeing a graph about this a couple years back. So if someone takes 5mgs of Hydro in the morning (and nothing else) for several years, and down the road, they completely stop, cold turkey, there is not supposed to be a 'withdrawl'. I've never tested this... so I can't say for sure.

    However, if someone has Addisons or adrenal insufficiency, they need to take much more, and spread it out... I think around 30-40mgs. A cold turkey stop would be life-threatening. Also, some docs used to put auto-immune patients on high doses prednisone (ie 30mgs pred = 120 mgs hydro) for years... and this would often completely shut down their adrenal production, and would often 'cause' Addison disease, even after extremely long tapers.

    For whatever reason, PWME seem to have a pretty bad deficits of cortisol in the morning, and that deficit is often worse during PEM. I have this too... and I've played with hydrocort before... and noticed I could wake up better... but I never stuck with it for more than a week... because I was scared of developing a resistance to it.
     
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  8. Thinktank

    Thinktank Senior Member

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    Update; she's now on 1mg prednisolone so almost ready to stop taking it! What a journey it has been of measuring, tailoring and bickering with incompetent doctors.

    I believe the 1mg LDN has really helped her getting of that poison. So to anyone struggling to get off prednisone, maybe give LDN a shot?
     
  9. hamsterman

    hamsterman Senior Member

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    That's great to hear. What you are saying makes sense. Long-term corticosteroid use, and specifically tapering off of it.. can wreak havoc on your system... especially sleeping patterns... and especially PWME... LDN has a very good track record with 'normalizing' our sleep, so it probably did help her.
     
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  10. Thinktank

    Thinktank Senior Member

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    She ran out of LDN 4 weeks ago and immediately developed insomnia which gradually improved but still sleep was not refreshing.
    She received her new 0.5mg LDN drops 3 days ago and started again with 1 drop before bedtime. Sleep immediately improved, no more nighttime awakening until 5 am. It also completely dimishes her allergies, without LDN she gets extremely itchy at night with huge bumps all over her body, none at all with LDN so it's positively calming her immune system.
    The immune markers for lupus also improve when on LDN.

    The only problem however is that she feels a bit dizzy and more fatigued the following day, she also has these dark circles under her eyes when on LDN. Anyone else experiencing this?
     

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