This tool is only designed to start conversations with your medical team in order to help you achieve a higher quality of life. The closer we get to mimicking what a real adrenal gland would produce, the higher quality of life we can achieve.
Hi Amber, Thanks for creating such a useful tool. I wanted to use the tool but there's a blank rectangle where I'm guessing the tool should be. All the best Soph
Hi Amber. I wanted to let you know that I've been using your tool again as a guide to work out a series of dosing schedules to trial. I'm going to bite the bullet and try waking at 5am to take my first dose of pred. This tool was helpful in working out when to try the 2nd dose of the day. I'm planning on taking copies of these graphs to show my endo. Despite talking about circadian rhythm dosing, she's of the school of thought that pred once a day is sufficient for most people and overnight steroid coverage is unnecessary. However she is also open to following how my body responds. I'm keen to show her this tool and hopefully get some change happening with her approach. Thanks for your time on developing this tool.
I've been working on something similar on and off the last couple months! So glad it's already been done! Can't wait to try it on my laptop. Thanks for putting it together!
I see you are using the pump. Do you remember your dosage before the pump?
It would seem to me based on this curve calculator, that people who dose with HC may want to consider some pred, or Dex for overnight.
Plus, although a hassle to some extent, based on this curve calculator, dosing every 2 hours or even less throughout the day would keep cortisol from spiking too high and avoid the roller coaster ride.
Interested to hear your thoughts. If I put it in 3 hour dosing (some recommend 4 hour) and I do a 10-8-6-4 for 28mg starting at 8AM it looks like I would be dosed too high for much of the day with wild swings and little left overnight.
I do! And I highly recommend pred or dex for overnight coverage.
I started mixing dex and HC in 2009. The last dose I was on before the pump was…
8AM – 15 mg HC 12PM – 10 mg HC 4PM – 5 mg HC Bed – 0.25 mg dex
I loved taking that 0.25 mg of dex at night, right before bed. It allowed me to sleep better, and in the mornings I was no longer waking up mid seizure. Some people prefer 1 mg of pred at night, it accomplishes essentially the same thing.
The more frequently the doses for HC, the better. The issue just becomes compliance. It gets really difficult to swallow pills ever 2-4 hours. So there's a trade off between Quality of Life and convenience. You have to find the balance that works best for you.
When people look at me, I want them to see me as different. But I do not want them to see me as different because I am diseased. I want them to see me as different because I am Clearly Alive.
Amber Nicole
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Anonymous
Thank you. It is great to be able to show Derek why he is feeling better by splitting his dose into 4 and taking it no more than 4 hours apart.
Amber Nicole
Yay! Sometimes it helps to be able to just see things visually.
Brooke Jones
This is awesome in the best case senerio what should the graph look like?
Amber Nicole
Hi Brooke, there isn't really a "best case" but ideally, you should be attempting some sort of circadian rhythm curve. This image shows "Circadian rhythm of cortisol in 33 individuals with 20-minute cortisol profiling." : http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3475279/figure/fig1-2042018810380214/
It was taken from this study: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3475279/
This tool is only designed to start conversations with your medical team in order to help you achieve a higher quality of life. The closer we get to mimicking what a real adrenal gland would produce, the higher quality of life we can achieve.
By God's Grace
I love that you're using your skills to better your world and those around you! You're more clearly alive than a lot of people I know 🙂
Amber Nicole
<3
Soso Bobo
Hi Amber,
Thanks for creating such a useful tool.
I wanted to use the tool but there's a blank rectangle where I'm guessing the tool should be.
All the best
Soph
Amber Nicole
Oh no! Thank you for pointing this out to me. I'll look into what happened and hopefully get it fixed quickly.
~ Amber
Amber Nicole
Hi Soph,
The backend technical difficulties have been resolved! 🙂 The tool is live again.
~ Amber
Charlie Park
Hi Amber. I wanted to let you know that I've been using your tool again as a guide to work out a series of dosing schedules to trial. I'm going to bite the bullet and try waking at 5am to take my first dose of pred. This tool was helpful in working out when to try the 2nd dose of the day. I'm planning on taking copies of these graphs to show my endo. Despite talking about circadian rhythm dosing, she's of the school of thought that pred once a day is sufficient for most people and overnight steroid coverage is unnecessary. However she is also open to following how my body responds. I'm keen to show her this tool and hopefully get some change happening with her approach. Thanks for your time on developing this tool.
Caryl Brown
I've been working on something similar on and off the last couple months! So glad it's already been done! Can't wait to try it on my laptop. Thanks for putting it together!
Amber Nicole
Glad you found it! This was definitely multiple years in the making.
~ Amber
Amber Nicole
Hi Charlie,
I'm so glad this tool is useful for you! This is a few years old, but have you seen it yet?
http://cahisus.co.uk/pdf/TRANSCRIPT%200F%20MEETING%2014%20JUNE%202014.pdf
It has excellent information about overnight steroid coverage and circadian rhythm dosing. It might help your endo change her school of thought.
~ Amber
Anonymous
Can't see the whole thing onbmy smartphone. Is there another link to see the whole thing?
Amber Nicole
You can either rotate your phone sideways, but honestly, if you are having problems on your mobile device, please switch to a computer.
~ Amber
Anonymous
I see you are using the pump. Do you remember your dosage before the pump?
It would seem to me based on this curve calculator, that people who dose with HC may want to consider some pred, or Dex for overnight.
Plus, although a hassle to some extent, based on this curve calculator, dosing every 2 hours or even less throughout the day would keep cortisol from spiking too high and avoid the roller coaster ride.
Interested to hear your thoughts. If I put it in 3 hour dosing (some recommend 4 hour) and I do a 10-8-6-4 for 28mg starting at 8AM it looks like I would be dosed too high for much of the day with wild swings and little left overnight.
Amber Nicole
I do! And I highly recommend pred or dex for overnight coverage.
I started mixing dex and HC in 2009. The last dose I was on before the pump was…
8AM – 15 mg HC
12PM – 10 mg HC
4PM – 5 mg HC
Bed – 0.25 mg dex
I loved taking that 0.25 mg of dex at night, right before bed. It allowed me to sleep better, and in the mornings I was no longer waking up mid seizure. Some people prefer 1 mg of pred at night, it accomplishes essentially the same thing.
The more frequently the doses for HC, the better. The issue just becomes compliance. It gets really difficult to swallow pills ever 2-4 hours. So there's a trade off between Quality of Life and convenience. You have to find the balance that works best for you.
~ Amber
Angie
Thank you… it fits what I experience.
Amber Nicole
I'm so thankful this tool can help you!
~ Amber
Tina Johnson
It's great to have a visual. Thank you for this blog!
Amber Nicole
You are very welcome! 🙂
~ Amber