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Weaning of long term steroid use

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Well, I finally heard from the dr. today and she said she does not

want to increase the steroid dose, just increase albuterol

treatments. I am supposed to up them to every 3 hours for today and

see what that does. She does seem to be feeling a little better

today, but then again, she also got her steroids yesterday

afternoon. It's tonight that I'm worried about since she doesn't get

any today. Has anyone heard if giving 1/2 dose in the morning and

1/2dose in the afternoon works better? Her dr. has her take the

whole dose in the morning, but I have been told that the 1/2 life of

steroids in the body is only 4 hrs. and that when you get to the

smaller doses giving 1/2 in the morning and 1/2 in the afternoon

works better??? I'm wondering if it's worth calling her dr. back and

asking about for her dose tomorrow. Thank goodness she goes in for

IVIG on Friday! I am going to have her immuno. dr. check her

cortisol level when we go in Fri. morning. That way we'll have a

better picture of how her adrenal gland is doing before we wean her

down another cc. She's having too many little things happening that

make me nervous. Like she was very dizzy again this morning (but at

least no fever). I've also read that low cortisol can make you short

of breath?

Thanks for all your words of wisdom! :)

Becki

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Becki

My kids take 5gm hydrocortisone in am and 2.5 in the evening (no later than

6pm). I know of a child that was weaned from the hydrocortisone replacement (on

it for over two years). When you do wean off of the replacement cortisol the

nighttime dose is the first to go. The body makes the most (needs the most)

cortisol in the am and in the afternoon it makes just a little bit. The

evening and late night is when you need the least amount of cortisol in your

body. I am not sure if 1/2 and 1/2 would be the right thing to do.

Theresa

Becki Rion <rionfam@...> wrote:

Well, I finally heard from the dr. today and she said she does not

want to increase the steroid dose, just increase albuterol

treatments. I am supposed to up them to every 3 hours for today and

see what that does. She does seem to be feeling a little better

today, but then again, she also got her steroids yesterday

afternoon. It's tonight that I'm worried about since she doesn't get

any today. Has anyone heard if giving 1/2 dose in the morning and

1/2dose in the afternoon works better? Her dr. has her take the

whole dose in the morning, but I have been told that the 1/2 life of

steroids in the body is only 4 hrs. and that when you get to the

smaller doses giving 1/2 in the morning and 1/2 in the afternoon

works better??? I'm wondering if it's worth calling her dr. back and

asking about for her dose tomorrow. Thank goodness she goes in for

IVIG on Friday! I am going to have her immuno. dr. check her

cortisol level when we go in Fri. morning. That way we'll have a

better picture of how her adrenal gland is doing before we wean her

down another cc. She's having too many little things happening that

make me nervous. Like she was very dizzy again this morning (but at

least no fever). I've also read that low cortisol can make you short

of breath?

Thanks for all your words of wisdom! :)

Becki

---------------------------------

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> Well, I finally heard from the dr. today and she said she

does not

> want to increase the steroid dose, just increase albuterol

> treatments. I am supposed to up them to every 3 hours for today and

> see what that does. She does seem to be feeling a little better

> today, but then again, she also got her steroids yesterday

> afternoon. It's tonight that I'm worried about since she doesn't

get

> any today. Has anyone heard if giving 1/2 dose in the morning and

> 1/2dose in the afternoon works better? Her dr. has her take the

> whole dose in the morning, but I have been told that the 1/2 life

of

> steroids in the body is only 4 hrs. and that when you get to the

> smaller doses giving 1/2 in the morning and 1/2 in the afternoon

> works better??? I'm wondering if it's worth calling her dr. back

and

> asking about for her dose tomorrow. Thank goodness she goes in for

> IVIG on Friday! I am going to have her immuno. dr. check her

> cortisol level when we go in Fri. morning. That way we'll have a

> better picture of how her adrenal gland is doing before we wean her

> down another cc. She's having too many little things happening that

> make me nervous. Like she was very dizzy again this morning (but at

> least no fever). I've also read that low cortisol can make you

short

> of breath?

> Thanks for all your words of wisdom! :)

> Becki

>

>

>

>

>

>

> ---------------------------------

> Never miss a thing. Make your homepage.

>

>

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Becki,

You can do bloodwork to see if the ACTH is there or the cortisol is there BUT

if you are taking steroids that may throw your test off.

I don't see why you couldn't take the bloodwork and just see what it is. I

would take both ACTH and cortisol.

You have to wean and start somewhere and I suppose there will be bumps in the

road. I would just watch and try to keep weaning. Just remember if vomiting

and sickness is bad, she may need to stress dose with steroids.

I believe a normal am cortisol level would be 6-23 depending on the lab. I

don't know a good level for ACTH.

Theresa

found this reference from the online Merck Manual

Suppression of Adrenal Function by Corticosteroids

In people who take large doses of corticosteroids, such as prednisone

, the function of the adrenal glands can become suppressed. This

suppression occurs because large doses of corticosteroids prevent the

hypothalamus and pituitary glands from producing the hormones that

normally stimulate adrenal function. If the person abruptly stops

taking corticosteroids, the body cannot restore adrenal function

quickly enough, and temporary adrenal insufficiency (a condition

similar to 's disease) results. Also, when stress occurs, the

body is not able to stimulate the additional production of

corticosteroids that are needed.

Therefore, doctors never discontinue the use of corticosteroids

abruptly if they have been taken for more than 2 or 3 weeks. Instead,

they taper the dose over weeks and sometimes months. Also, the dose

may need to be increased in people who become ill or otherwise

severely stressed while taking corticosteroids. Corticosteroid use may

need to be resumed in a person who becomes ill or otherwise severely

stressed within weeks of having the corticosteroid tapered and

discontinued.

Becki Rion <rionfam@...> wrote:

> Well, I finally heard from the dr. today and she said she

does not

> want to increase the steroid dose, just increase albuterol

> treatments. I am supposed to up them to every 3 hours for today and

> see what that does. She does seem to be feeling a little better

> today, but then again, she also got her steroids yesterday

> afternoon. It's tonight that I'm worried about since she doesn't

get

> any today. Has anyone heard if giving 1/2 dose in the morning and

> 1/2dose in the afternoon works better? Her dr. has her take the

> whole dose in the morning, but I have been told that the 1/2 life

of

> steroids in the body is only 4 hrs. and that when you get to the

> smaller doses giving 1/2 in the morning and 1/2 in the afternoon

> works better??? I'm wondering if it's worth calling her dr. back

and

> asking about for her dose tomorrow. Thank goodness she goes in for

> IVIG on Friday! I am going to have her immuno. dr. check her

> cortisol level when we go in Fri. morning. That way we'll have a

> better picture of how her adrenal gland is doing before we wean her

> down another cc. She's having too many little things happening that

> make me nervous. Like she was very dizzy again this morning (but at

> least no fever). I've also read that low cortisol can make you

short

> of breath?

> Thanks for all your words of wisdom! :)

> Becki

>

>

>

>

>

>

> ---------------------------------

> Never miss a thing. Make your homepage.

>

>

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--My son sometimes has a hard time weaning down after he's been on

them for a while, as well. There have been times, that we go down to a

lower dose for two days, then back to the regular dose, or a 3/4 dose,

then two days lower, then back a little higher for one day. It takes

forever, but often this is the only way we can do it.

valarie

- In , Theresa Marks <tcm_marks@...> wrote:

>

> Becki,

> You can do bloodwork to see if the ACTH is there or the cortisol

is there BUT if you are taking steroids that may throw your test off.

> I don't see why you couldn't take the bloodwork and just see what

it is. I would take both ACTH and cortisol.

> You have to wean and start somewhere and I suppose there will be

bumps in the road. I would just watch and try to keep weaning. Just

remember if vomiting and sickness is bad, she may need to stress dose

with steroids.

> I believe a normal am cortisol level would be 6-23 depending on

the lab. I don't know a good level for ACTH.

> Theresa

>

> found this reference from the online Merck Manual

>

> Suppression of Adrenal Function by Corticosteroids

>

> In people who take large doses of corticosteroids, such as prednisone

> , the function of the adrenal glands can become suppressed. This

> suppression occurs because large doses of corticosteroids prevent the

> hypothalamus and pituitary glands from producing the hormones that

> normally stimulate adrenal function. If the person abruptly stops

> taking corticosteroids, the body cannot restore adrenal function

> quickly enough, and temporary adrenal insufficiency (a condition

> similar to 's disease) results. Also, when stress occurs, the

> body is not able to stimulate the additional production of

> corticosteroids that are needed.

>

> Therefore, doctors never discontinue the use of corticosteroids

> abruptly if they have been taken for more than 2 or 3 weeks. Instead,

> they taper the dose over weeks and sometimes months. Also, the dose

> may need to be increased in people who become ill or otherwise

> severely stressed while taking corticosteroids. Corticosteroid use may

> need to be resumed in a person who becomes ill or otherwise severely

> stressed within weeks of having the corticosteroid tapered and

> discontinued.

>

>

> Becki Rion <rionfam@...> wrote:

>

> > Well, I finally heard from the dr. today and she said she

> does not

> > want to increase the steroid dose, just increase albuterol

> > treatments. I am supposed to up them to every 3 hours for today and

> > see what that does. She does seem to be feeling a little better

> > today, but then again, she also got her steroids yesterday

> > afternoon. It's tonight that I'm worried about since she doesn't

> get

> > any today. Has anyone heard if giving 1/2 dose in the morning and

> > 1/2dose in the afternoon works better? Her dr. has her take the

> > whole dose in the morning, but I have been told that the 1/2 life

> of

> > steroids in the body is only 4 hrs. and that when you get to the

> > smaller doses giving 1/2 in the morning and 1/2 in the afternoon

> > works better??? I'm wondering if it's worth calling her dr. back

> and

> > asking about for her dose tomorrow. Thank goodness she goes in for

> > IVIG on Friday! I am going to have her immuno. dr. check her

> > cortisol level when we go in Fri. morning. That way we'll have a

> > better picture of how her adrenal gland is doing before we wean her

> > down another cc. She's having too many little things happening that

> > make me nervous. Like she was very dizzy again this morning (but at

> > least no fever). I've also read that low cortisol can make you

> short

> > of breath?

> > Thanks for all your words of wisdom! :)

> > Becki

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Never miss a thing. Make your homepage.

> >

> >

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