Yes, there are exceptions to this. People with other diseases (Lyme, lupus, colitis) tend to do better with some or all long acting steroids.
Most people with Addison's will have a better quality of life with split dosing of hydrocortisone (look up the studies on Google Scholar, PubMed or Medscape using the key words "Quality of life, Addison's". Split dosing means taking 2/3 of the dosing before noon in two doses and 1/3 after noon. One example of this might be:
10 mg HC upon waking
5 mg HC at 11 am
5 mg HC at 3 pm
"It's too hard..."
PLEASE, SPARE ME!!! It takes 3 easy steps...
#1 Buy a pill organizer and fill it ONCE A MONTH
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| Yes, it's a pain in the butt to get everything out and fill 124 little compartments. It's worth it. |
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| Once it's all completed, it's easy for the rest of the month! I keep track of major med changes in the little red notebook.
#2 Set your alarm
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| Here's a cell phone with the alarm set. Do it once and you won't have to do it again until you change your dosing schedule.
#3 Put your daily pill holder somewhere you will find it.
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.JPG) I start out by putting my before bed meds in one little cup and my first thing in the morning pills in another. I promptly take the pill holder and ....JPG) |
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Put it in my pants pocket or my purse. Work at a desk, keep it in your desk drawer When my alarm goes off (you can set yours to vibrate if you're self conscious), I take the pills. Sometimes I hit snooze and take the pills 10 or 20 minutes later. In recent years, my alarm has gone off, I have taken my pills by snapping open the lid and throwing back the pills no matter who I am in front of. PEOPLE NEVER COMMENT OR EVEN SEEM TO NOTICE. All that bullshit about, "people will discriminate against me so I can't let people know I am taking pills" is just that, bullshit. People only care about themselves, not you.
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| Just in case I manage to not have my pills with me, I keep a small stash in my wallet. In this stash, I keep a couple thyroid pills, florinef, lots of HC, a migraine pill, a Zofran and some ibuprofen. Yes, all that in something 1/2 inch thick and the size of a quarter. |
Take care of your body, use bioidentical medications when possible. Take your meds in a physiologic way.
It's not hard to take meds multiple times throughout the day. If you feel bad and take a steroid other than hydrocortisone, take your meds once or only twice a day, try this.
22 comments:
Haha! Amen, sister. The first endo who wanted me to go on treatment insisted I take prednisone because I only have to take it once a day. I was thinking, do I really look that stupid?
I take my HC four times a day and have missed a dose 2, maybe 3 times over 2 years. Not a big deal to be getting closer to natural cortisone.
I have one of those little nitro pill containers some people where as a necklace. I put mine on my key chain and carry it everywhere (I have the same key chain I got when I was 14, so I don't worry about losing it!). The container is sealed and it holds quite a bit of HC tablets.
I admit I was uncomfortable about popping pills at first. I don't even think about it now. And you're right, no one has ever blinked an eye. Probably because they only care about themselves, as you said!
ps: Hope you're feeling better, Dusty. It's been boring without you. ;)
Thanks Michael! I hope you get to feeling better too!
I own a gazillion pill sorters and have them EVERYWHERE! And I take my 2nd dose of HC at church, in front of congregation, with my plastic H2O bottles making that lovely sound! AMEN TO HC!
Great post! I love all the pictures with it. Something else that I've found is that I start to ache if I forget to take my HC, so that's yet another built-in reminder, from my own body no less, that helps me always remember to take my pills. This just isn't something you're likely to forget to do! LOL! :-) It's actually a blessing, huh?
Thanks for your great blog! ~Anne
Amen sista! My endo always looks at me with this weird sideways glance when I remind him about my doses - 7.5 mg wakeup, 5 mg 11:15 am, 5 mg 2:15 pm, and 2.5 mg 4:00 pm. I always tell him, "I just use the alarm on my iPhone" and he just laughs and shakes his head, as if it's beyond him.
So strange?! It's my HEALTH and my BODY and my LIFE and I'm only 31 so I'll be on DRUGS for another 70 YEARS or so?!?!? I think people must be ignorant, not stupid, who think they can't split doses.
So good job on your post! You should post this on the other forums too. ;)
Great education piece!!!
love the pictures.. it is much easier to sort the meds all at once.. once a month.. even more so if you take multiple medications.. for multiple conditions. it can get confusing.... it makes it much easier to stay compliant and even manage meds if you get sick.
This is EXCELLENT. If a person w/Addison's thought they couldn't split a dose, then they've been putting their health in danger, but each person's needs are different. It seems the "getting diagnosed" part is often the most difficult hurdle. However, after years w/this disease, I've seen very unfortunate people who have experienced major challenges w/this disease; they have my compassion. Daily maintenance is actually the brighter side of Addison's, especially when it is adjusted, accordingly. Your example is wonderfully detailed and will be very helpful to many people who are not getting this advice for their daily meds.
I left the last comment -- Didn't get the signage right. :-) Lana C.
I am a high school teacher with Addison's and my 2nd and 3rd doses fall right in the middle of my classes. I have my cell phone set on vibrate and when it rings, I discretely take my pills. I didn't think the kids really noticec until one day when I didn't take my meds as soon as the alarm rung. They stopped what they were doing and refused to continue until I took my pill. I thought it was really sweet that they were looking out for me.
Once you get into the habit of taking your meds whenever you need them, you really don't care who's around or not.
Wow, I'm a spaz. Thanks for all the great responses to this post. It's one of my favorites! Too bad it sounds like I'm singing to the choir though.
Thanks Poppy, Anne, Erin, JoAnne, Lana and Anon school teacher.
Please feel free to repost this as long as I'm given some credit and my blog URL is attached to the credits.
:) Dusty
Let it be said that I am a quick learner.
I am on my first split of my dosage. As I thought about how to do it, I considered my couple of weeks past. I take 30mg overall.
I took 20mg this morning, just like always, but I took 2.5mg just before lunch, plan on another 2.5mg around 3 and then perhaps the last 5mg at 6. So far, I feel great and didn't have any of the ravenous feelings of low blood sugar, like I have been having.
I think I am on the right track.
Thanks for the link, Dusty.
Gina T in NC
Hey Gina,
I hope your dosing does work for you.
For most people, 20 mg is a whopper all at once and might eventually cause and increase in your overall blood sugar.
Experiment and keep track of your experiments. You go girl!
Eventually, you may find more physiologic dosing a little bit easier on your body. 15/10/5 or 12.5/7.5/5/5 or 10/7.5/7.5/5
:) Dusty
Oh, I love this post!
I was diagnosed three weeks ago after years and years of thinking I was becoming increasingly neurotic. The first thing I did when I came home from the hospital was vacuum the web for both patient advice and scientific articles.
I've lowered my dose of 37,5 mg cortisone acetate to 19 mg, which I've split into three doses. 1/3 when waking at night to pee, 1/3 upon waking and 1/3 before lunch.
Being on such a low maintenance dose, I figure I can be more relaxed towards increasing my dose under moderate stress. I do get hot flashes in the afternoon, but I don't know what it means or whether it's has anything to do with low cortisol levels.
My biggest issue at present is a numbing headache and edema of the feet and ankles. I'm on 0,1 mg Florinef. My endo says I have to adjust to the increased fluid volume in my body, but it's driving me crazy, and I'm self-medicating with coffee to make the headache go away. Do any of you have any experience on this?
Best regards, Lise
Lise,
Are you in the US? CA was prescribed in the 60s for Addison's, you might want to consider asking your doctor to switch you to an EQUIVALENT dose of Hydrocortisone. HC is easier on the liver than CA.
As far as the florinef goes, a headache and edema sound like too much. Your doc needs to test your electrolytes, bp and renin. If your BP is high, sodium high and renin high if you're on too much florinef.
Come join us at the Addison's support forum!
www.addisonssupport.com
Dusty
Thank you, Dusty.
I live in Norway (hence my school-book English). There's sbout 600 addisonians in the whole of Norway, and the only treatment available is CA in 25 mg tablets. My new companion is a small device that splits the tablets into crumbly quarters... No, I don't really think anything has changed in the treatment of Addinson's during the last 50 years here.
You can imagine how happy I am to find that there are communities such as yours. I will keep your suggestions in mind at my next control, and I will definitely join the forum.
Lise
Hi again, Dusty!
I found out why CA is the drug of choice in Norway: Resource optimization. HC costs society about 10x (and me about 4x) more. In the eyes of the physician, the two are functionally equal.
Lise
I just wanted to say thank you for taking ur time to nake this site.I find it very helpful.My 16 year old son was just diagnosed with Addisons 2 months ago.I actually made them check for Addisons they kept saying no its not its to rare but 9 days of my son feeling like crap and me making tons of calls someone listened and tested him.Few more days and I dont think hed be here with us.He also has hypothyroid and type 1 diabetis.I luv reading what other people have to say and there expiercences cuz as I tell the drs my son is not a TEXTBOOK case. so again ty so much for sharing ur time with us.
The problem as I see it isn't splitting the doses. It is knowing when you need extra cortisone? All these dosing schedules sound great. But the body requires different amounts of cortisol for the stress level it is encountering. How do you make this problem straight forward?
Anonymous,
I post a lot about needing extra cortisone during exercise, injury and sickness. Please use the handy search bar or come on over to the Addison's Support forum www.addisonssupport.com and ask specific questions.
Here's a link to some helpful posts: http://addisonssupport.blogspot.com/search/label/Essential%20Addison%27s%20Information
Dusty
I was diagnosed in 2008. I have tried prednisone and hydrocortisone. My endo recommends hydrocortisone, but I've always felt better on prednisone. I'm not sure why, since it's less physiologic. My endo also tells me to take my meds first thing in the morning, but I take them at night before I go to bed. It's the only way I can wake up in the morning. Any thoughts? Thank you for a wonderful, wonderful blog!
I was diagnosed in 2008. I have tried prednisone and hydrocortisone. My endo recommends hydrocortisone, but I've always felt better on prednisone. I'm not sure why, since it's less physiologic. My endo also tells me to take my meds first thing in the morning, but I take them at night before I go to bed. It's the only way I can wake up in the morning. Any thoughts? Thank you for a wonderful, wonderful blog!
Cheyenne,
Come on over to the forum and ask your questions! www.addisonsuspport.com You'll get a lot of insight and perhaps some answers.
:) Dusty
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