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Dexamethasone and Appetite
Hi. I am a 21 year old female with adrenal insuffiency (Addison's disease). I am on dexamethasone 0.75mg once a day and honestly I can not stay full for very long. I cant just eat something like grapes and expect to not be hungry anymore. I HAVE TO HAVE SOLID FOODS. I have gained probably 20 pounds since first starting the Prednisone and then switching to Dexamethasone. I am not sure how long I have to be on this medication but for right now its probably going to be a while. What can I do to curb my appetite? Are there any supplements or something I can take? Please help.
FYI I test all the time. The meds don't test as a replacement like real cortisol.
So my doctor struggles with tests and how to tell if I am replaced properly. He more relies on how I feel...
How you feel sounds like you are on too much imho...
So my doctor struggles with tests and how to tell if I am replaced properly. He more relies on how I feel...
How you feel sounds like you are on too much imho...
REGAN, the above post is FOR YOU. I made a mistake. Roll Tide, the above post is not for you, sorry.
Roll Tide, I just read your post and it has helped me so much to understand this awful dexamethasone that they stupidly put me on. I was found to be very low on cortisol, and so I was put on hydrocortisone. I had some problems with it, went off it, and then they put me on dex. Talk about being miserable! I've had to increase a couple of my medications to resolve some side effects, and even so, I do not feel quite right.
I was going to see the endo people in September, but I'm thinking I should go in this upcoming June instead. I'll ask to go back to the hydro, as it seems to be the one thing that will up my adrenal insufficiency. And I also think they should plan for me to go off it after, say, six months, and see if my adrenals will stay normal all by themselves. If not, I know that I will have to take the hydrocort for the rest of my days.
Could you respond to what I'm saying here, do you think my plan makes sense. I AM going to go off the dex, it's just a matter of when. By the way, I was on 1/2 of the recommended dose of .5 for a few months, they tested by cortisol with a blood draw, and it was below 0.5. Well, then I went ahead and took the correct dose of .5 (one pill), and after six weeks they tested me again, and I'M STILL at the same low reading. Therefore, seems like this dex is SUPRESSING my cortisol, which is the exact opposite of what I need. Ye gads.
Thanks for anything anyone can tell me that will help on this dex issue.
GG
I was going to see the endo people in September, but I'm thinking I should go in this upcoming June instead. I'll ask to go back to the hydro, as it seems to be the one thing that will up my adrenal insufficiency. And I also think they should plan for me to go off it after, say, six months, and see if my adrenals will stay normal all by themselves. If not, I know that I will have to take the hydrocort for the rest of my days.
Could you respond to what I'm saying here, do you think my plan makes sense. I AM going to go off the dex, it's just a matter of when. By the way, I was on 1/2 of the recommended dose of .5 for a few months, they tested by cortisol with a blood draw, and it was below 0.5. Well, then I went ahead and took the correct dose of .5 (one pill), and after six weeks they tested me again, and I'M STILL at the same low reading. Therefore, seems like this dex is SUPRESSING my cortisol, which is the exact opposite of what I need. Ye gads.
Thanks for anything anyone can tell me that will help on this dex issue.
GG
Rolltidegirl93,
I also had a ravenous appetite on dexamethasone and agree with rumpled that you should seriously consider switching to hydrocortisone. I feel so much more normal on the hydrocortisone and I have actually lost a few pounds even though I feel I'm eating like a Queen most days. I also noticed an improvement in my health when I started taking probiotics twice a day (with my steroid doses). These help your gut absorb more of the nutrients you're ingesting, which might buy you some more time before your body says it needs more.
It's important to note that dexamethasone does not interfere with all the cortisol tests you need to confirm adrenal insufficiency. So if you're still getting tested you'll want to stay on it.
"Prednisone and dexamethasone are longer-acting steroids and take longer to become active in the bloodstream after being swallowed. Prednisone and dexamethasone are normally taken less often and in larger single doses. Individuals who switch to these drugs from hydrocortisone may find they need to increase their fludrocortisone dose." (source: https://www.addisons.org.uk/info/manual/medication.pdf)
If you produce cortisol normally, then you produce the most ~8 am and it steadily declines until ~10 pm when it drops sharply. You also have dips in your cortisol level at ~11 am and ~2 pm. The 8 am spike is what tells you to wake up, and the 10 pm drop is what tells you to fall asleep. These highs and lows are normal and important to replicate if you want to feel normal. Prednisone has a half-life of 3-4 hours, so it maintains a steady level of cortisol in your body for 3-4 hours, and then half that amount for another 3-4 hours, etc. That is not a normal cortisol experience.
I take my hydrocortisone doses at ~8 am (whenever I wake up naturally) and ~11 am. I used to try taking it at ~2 pm, but have found I don't need that dose. Hydrocortisone has a half-life of 1.5 hours. So theoretically when I take it at 8 am it maintains that cortisol level until ~9:30 am and then my body flushes out half of it. Same thing happens when I dose at 11 am. Since I switched I feel so much more normal. I have high and low energy points. It's easier to fall asleep, which I attribute to the shorter half life (my body gets rid of all the steroids at some point in the evening). My steroid-induced facial blemishes went away. Etc!
A few more important points: these long-acting steroids have a glucocorticoid effect that is double to triple the effect of cortisol produced in your body, meaning they are 2-3 times more potent than regular cortisol. I suspect my body didn't know what to do with such a strong reaction. Hydrocortisone IS cortisol, so it has the same glucocorticoid effect. Finally, the withdrawal from these long-acting steroids are a common CAUSE of developing Addison's. Again, I agree that they are useful at first when you're doing all your tests, but I am not convinced they are good for the diagnosed adrenal insufficient patient. Why bother taking something that has been proven to further damage your adrenal glands?
I basically wrote this same thing in a book if you're interested: http://www.amazon.com/dp/B00RQPT59E. It started out as my journal to keep track of all the tests and medications and lifestyle changes...and then I thought, hey, this would be useful to anyone in my situation.
Good luck!
I also had a ravenous appetite on dexamethasone and agree with rumpled that you should seriously consider switching to hydrocortisone. I feel so much more normal on the hydrocortisone and I have actually lost a few pounds even though I feel I'm eating like a Queen most days. I also noticed an improvement in my health when I started taking probiotics twice a day (with my steroid doses). These help your gut absorb more of the nutrients you're ingesting, which might buy you some more time before your body says it needs more.
It's important to note that dexamethasone does not interfere with all the cortisol tests you need to confirm adrenal insufficiency. So if you're still getting tested you'll want to stay on it.
"Prednisone and dexamethasone are longer-acting steroids and take longer to become active in the bloodstream after being swallowed. Prednisone and dexamethasone are normally taken less often and in larger single doses. Individuals who switch to these drugs from hydrocortisone may find they need to increase their fludrocortisone dose." (source: https://www.addisons.org.uk/info/manual/medication.pdf)
If you produce cortisol normally, then you produce the most ~8 am and it steadily declines until ~10 pm when it drops sharply. You also have dips in your cortisol level at ~11 am and ~2 pm. The 8 am spike is what tells you to wake up, and the 10 pm drop is what tells you to fall asleep. These highs and lows are normal and important to replicate if you want to feel normal. Prednisone has a half-life of 3-4 hours, so it maintains a steady level of cortisol in your body for 3-4 hours, and then half that amount for another 3-4 hours, etc. That is not a normal cortisol experience.
I take my hydrocortisone doses at ~8 am (whenever I wake up naturally) and ~11 am. I used to try taking it at ~2 pm, but have found I don't need that dose. Hydrocortisone has a half-life of 1.5 hours. So theoretically when I take it at 8 am it maintains that cortisol level until ~9:30 am and then my body flushes out half of it. Same thing happens when I dose at 11 am. Since I switched I feel so much more normal. I have high and low energy points. It's easier to fall asleep, which I attribute to the shorter half life (my body gets rid of all the steroids at some point in the evening). My steroid-induced facial blemishes went away. Etc!
A few more important points: these long-acting steroids have a glucocorticoid effect that is double to triple the effect of cortisol produced in your body, meaning they are 2-3 times more potent than regular cortisol. I suspect my body didn't know what to do with such a strong reaction. Hydrocortisone IS cortisol, so it has the same glucocorticoid effect. Finally, the withdrawal from these long-acting steroids are a common CAUSE of developing Addison's. Again, I agree that they are useful at first when you're doing all your tests, but I am not convinced they are good for the diagnosed adrenal insufficient patient. Why bother taking something that has been proven to further damage your adrenal glands?
I basically wrote this same thing in a book if you're interested: http://www.amazon.com/dp/B00RQPT59E. It started out as my journal to keep track of all the tests and medications and lifestyle changes...and then I thought, hey, this would be useful to anyone in my situation.
Good luck!
It is the steroids. It is not you.
Do a little search in your favorite search engine and find a steroid calculator. Look at the biologic half-life of HC (hydrocortisone) vs pred and dex.
With HC you can imitate better a normal body as a normal body does have ups and downs in cortisol. Pred and dex last long - 36 to 54 hours! So when you take the dose for the next day, the previous days dose is still there. I call that stacking. You can actually give yourself steroid-induced Cushing's syndrome just from taking the meds.
I take .5 dex and I also have appetite issues. I cut carbs down (try to cut them out but that is really hard!) and that worked a bit as I am able to lose a tiny bit and at least stay stable at least until I end up in the hospital and they pump me up on more steroids and fluids and I gain 10lbs in a day. :(
So... why are you on dex or pred? I am on dex to suppress my ACTH? Usually one is only on long acting steroids as they have another issue. The normal replacement is HC, but switching is going to mean a wean, and it will hurt. The long acting ones are easy with once a day, but the long term - lots of side effects on your bones eyes and more...
So why the long acting steroids?
Do a little search in your favorite search engine and find a steroid calculator. Look at the biologic half-life of HC (hydrocortisone) vs pred and dex.
With HC you can imitate better a normal body as a normal body does have ups and downs in cortisol. Pred and dex last long - 36 to 54 hours! So when you take the dose for the next day, the previous days dose is still there. I call that stacking. You can actually give yourself steroid-induced Cushing's syndrome just from taking the meds.
I take .5 dex and I also have appetite issues. I cut carbs down (try to cut them out but that is really hard!) and that worked a bit as I am able to lose a tiny bit and at least stay stable at least until I end up in the hospital and they pump me up on more steroids and fluids and I gain 10lbs in a day. :(
So... why are you on dex or pred? I am on dex to suppress my ACTH? Usually one is only on long acting steroids as they have another issue. The normal replacement is HC, but switching is going to mean a wean, and it will hurt. The long acting ones are easy with once a day, but the long term - lots of side effects on your bones eyes and more...
So why the long acting steroids?
1 Comments
I am trying to lower my ACTH also. Thus, Addison’s and high ACTH. My doctor put me on .5. Do you think I could get by on .4? I can measure the liquid.....He is open to anything...which is rather worrisome in itself so I would like to hear from a patient. Thank you.
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