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Old 05-22-2011, 09:10 PM   #1
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Help - timing & dosing of steroids

I"m having a very difficult time trying to figure out the right timing for taking Hydrocortisone. My problem mainly lies in the evening and sleeping hours. If I don't take enough in the evening, I wake up a few hours after going to sleep, or very early in the a.m. and am still tired, but can't sleep and have low cortisol symptoms.. so then I take 2.5-5 mg and usually fall back to sleep. So you would think that I need to take more the night before. And when I do this, I'm wide awake until 2 or 3 a.m. I cannot seem to get it right and I have grown to dread bedtime. My internal body clock is completely screwed up.. it's been years since I've slept through the night like a healthy person.

I would LOVE to hear from some of you regarding your steroid schedule : what TIME and HOW MUCH cortisone you take daily?

Thanks very much,
Mollie

 
Old 05-27-2011, 08:58 PM   #2
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Re: Help - timing & dosing of steroids

Hi luvthesun,
I am by no means an expert but thought I'd share my experiences. I, too, am still working to find the right dosage and timing. But here's what I'm doing for now:

I take 40mg total of hydrocortisone per day. I will generally kickstart my day with 20mg upon waking. Then 15mg around noon and 5mg mid-afternoon (no later than 4p because it will affect my sleep).

This is not the perfect schedule because I begin to fade fast by 6pm. I'm ready to roll up the carpets and jump in my jammies before 7, which is not cool since we are now having long daylight hours and doesn't get dark til after 9. But, if I take the HC later than 4, I really have issues with getting to sleep.

I have even tried to take 30mg upon waking and then 10mg around 2 or 3pm. But that just leaves me fatigued in the middle of the day and also by early evening.

So I don't really have an answer for you--just wanted you to hear what other people are trying. Keep trying different things, something's bound to work for you eventually.

 
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Old 05-27-2011, 09:51 PM   #3
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Re: Help - timing & dosing of steroids

Hi Caniac...
Thank you VERY much for responding.. it really helps to hear what other people are doing. I find it extremely disappointing that my thread was only asking for others to post their cortisone schedules - as I'm having a difficult time finding the right fit- and as of right now, 171 people have viewed the thread, and you are the only response. Anyway, thank you again .. I will continue to work at it. But let me ask you one more thing... do you feel awful & exhausted when you first wake up? I feel like my body's "need" for cortisone is what actually wakes me up.. just feels wrong. Maybe that's the way it is.

Take care,
Mollie

 
Old 05-28-2011, 06:17 PM   #4
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Smile Re: Help - timing & dosing of steroids

Hi luvthesun,

Well this is my first posting on this site. I hope I can give you some useful info. I;ve had Addison's now for 9 years and have played alot with the dosing and different meds. My endo had me on 30mg of cortef a day and last summer I decided it was not enough for me (6ft, 220lbs) I found that when I was taking 40mg I felt much better. I explained that to him and he was fine with me changing my dosage.
Now I find that dividing the dosage is the best way to handle the cortef. I take 10mg/4 times a day. Yes it is more difficult, but my watch alarm is set so I don't forget. 10mg when I wake up at 0530hrs. 10mg at 10am, 10mg at 1300 and 10 at 1600.. I do take .01 florinef in the morning also and .02 in the summer.
I hope it helps,

 
Old 05-28-2011, 09:09 PM   #5
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Re: Help - timing & dosing of steroids

luvthesun~
I feel very rough and unwell most mornings upon awakening. I almost never feel refreshed and ready to roll. I am definitely no longer a morning person since the Addison's diagnosis in 2003. Most days I just don't want to get out of bed--feeling too exhausted to be productive, drained, etc. Mornings can be rough!

 
Old 05-31-2011, 10:40 AM   #6
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Re: Help - timing & dosing of steroids

I have terrible insomnia also but I always attributed it to genetics since everyone in my family seems to have trouble sleeping -- but not as bad as me. I never thought to think this might be due to the Addison disease medication.

I take 10 mg in the morning and then 10 mg around 4pm along with .05 fludro. However, my endocrinologist said I may want to up the fludro after my last blood test but that seems to have made me lose more water not retain it. Not sure if there was something else going on and that was coincidental. I've now upped the hydro morning dose to 20 mg and take only .05 of fludro so see if I hold fluids better. I know high doses of hydrocortison will make me hold water.

You take a lot higher doses of hydo than I ever have unless I'm in an emergency situation.

 
Old 05-31-2011, 10:51 AM   #7
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Re: Help - timing & dosing of steroids

It's interesting to hear your experiences. The extreme fatigue was how I felt before I was formally diagnosed and put on treatment. Within days of starting hydo I felt so energetic and normal. Even when I can't sleep I'm surprised that I'm still able to function but I've come to rely on Ambien more and more to get at least 4 hrs of sleep now and then. I wonder if there is some other underlying condition that is causing the fatigue.

The Addison's symptom I have problem with is dehydration.

 
Old 09-02-2011, 06:50 PM   #8
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Re: Help - timing & dosing of steroids

Quote:
Originally Posted by luvthesun View Post
I"m having a very difficult time trying to figure out the right timing for taking Hydrocortisone. My problem mainly lies in the evening and sleeping hours. If I don't take enough in the evening, I wake up a few hours after going to sleep, or very early in the a.m. and am still tired, but can't sleep and have low cortisol symptoms.. so then I take 2.5-5 mg and usually fall back to sleep. So you would think that I need to take more the night before. And when I do this, I'm wide awake until 2 or 3 a.m. I cannot seem to get it right and I have grown to dread bedtime. My internal body clock is completely screwed up.. it's been years since I've slept through the night like a healthy person.

I would LOVE to hear from some of you regarding your steroid schedule : what TIME and HOW MUCH cortisone you take daily?

Thanks very much,
Mollie
Hi Mollie,

I have had addisons for 11 yrs. It is a pain to be in medication for our energy levels and it effects our circadian rythym. I have to take ambien to sleep at night and prednisone to stay awake and my Dr lowered mine to .5 mg a day and now I get soo tired. So I am tired just about all the time. My thyroid is always right on with levothyroxin. I am turning into a fat and tired person. If I do any work at all I am all done in and need to rest. I am not overweight but out of shape. If I do exercise and am so drained the next day I can not even talk straight. Good luck with your dosage. Cortisone for most people energizes you for a short time and can mess with your sleep rythym.

 
Old 09-03-2011, 09:27 AM   #9
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Re: Help - timing & dosing of steroids

I take 10mg at 7am, 5mg at 11am, and another 5mg at 3pm.

I know it isn't a lot, but this seems to be working for me. I am finally sleeping through the night for the first time in almost a year

 
Old 09-03-2011, 09:59 AM   #10
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Re: Help - timing & dosing of steroids

I hear ya. I have the same issues

 
Old 09-05-2011, 06:30 PM   #11
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Re: Help - timing & dosing of steroids

Just to give you another person's experience, I take 20 mg hydrocortisone in the morning with .05 mg fludrocortisone and then 5 mg hydrocortisone around 4 pm.The hydrocortisone doesn't seem to affect my sleep, but the fludrocortisone will prevent sleep if I take it late in the day. Your endocrinologist should be able to determine if you need to take more by looking at the results of your blood tests.

 
Old 09-05-2011, 07:49 PM   #12
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Re: Help - timing & dosing of steroids

Thanks very much for taking the time to respond... VERY much appreciated.

Sincerely,
Mollie

 
Old 01-01-2012, 03:42 PM   #13
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Re: Help - timing & dosing of steroids

Just another experience. I take 20mg hydrocort first thing upon waking along with 0.1 mg of fludrocort then 10mg hydrocort halfway through my day. Any illness, injury, or extreme stress require modifications to dosage.

 
Old 01-01-2012, 04:54 PM   #14
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Re: Help - timing & dosing of steroids

Quote:
Originally Posted by TinyTot2 View Post
I take 10mg at 7am, 5mg at 11am, and another 5mg at 3pm.

I know it isn't a lot, but this seems to be working for me. I am finally sleeping through the night for the first time in almost a year :)

 
Old 01-01-2012, 04:59 PM   #15
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Re: Help - timing & dosing of steroids

Wow, what an interesting thread. There are alot of addison's people that are having sleep issues and morning fatigue. I used to be a morning person when I was younger now to get up early is very difficult more of a night owl now. It is hard when we have to be at my best during the daytime hours. I rely on coffee, tried to kick the coffee habit but I need the caffeine to get me going.

 
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