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>>>In Fran's last post she said that Prednisone has been known to

alleviate fever in fever disorders, other than . I have heard

that before on this website. My question is which fever disorders,

I presume genetic, does the Prednisone work? I am just curious.>>>

Prednisone is used in TRAPS... it is questioned with HIDS however after

sitting in on another fever group I have met a few adults with HIDS and

informed that it definietly helps with the symptoms....

TRAPS is one of the newer isolated mutations found a few years ago again at

NIH....and it is genetic as is HIDS

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  • 5 months later...
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Hi Heidi,

I know that pred. doesn't work for everyone so I can

only speak for our experience with the drug. My

daughter has been taking pred. at the onset of fever

for just under a year. She gets one or two doses

depending on if the fever comes back in the next day

or two. She is 3 and 25 lbs. and receives 6ml doses.

It has been our experience that once the fever is gone

(usually within a couple hours of the first dose),

Audrey is back to her usual self as if she never had

the fever, lesions, malaise, etc. However, she still

complains about body aches between episodes.

I would definitely call your doctor and report these

results. I am curious to hear what they have to say.

Please send an update.

I hope Mason is feeling well soon. The poor guy has

been through so much!

Best wishes,

Mom to (5) and Audrey (3 )

California

--- and Heidi Koppenhaver <heidikopp@...>

wrote:

> Hi All,

>

> These past few weeks have been really different for

> Mason. His appetite

> diminishing, bellyache on and off and was really

> severe the other night for

> over an hour, the pain-less blister last week, the

> chronic constipation

> which quickly becomes diarrhea on and off, almost

> throwing up two days ago

> for no apparent reason, the extreme crankiness ...

> and now this morning a

> fever! He has not had a fever since March and that

> one only lasted a few

> short hours and didn't make him feel this badly.

> The fever started right

> around 101 and his Doctor at NIH told me during his

> May appt. that the next

> time he fevers I should administer a one time dose

> 15 ml of Prednisone and

> to report back to him the results. Well, the

> Prednisone seems to have taken

> the fever away (for now); however, he looks

> incredibly bad yet.

>

> So my question is: Shouldn't the Prednisone reduce

> his other symptoms as

> well? He just keeps saying he feels like throwing

> up and truly is not

> functioning well. His eyes are quite red and his

> face just shows how awful

> he is feeling. He has been laying for hours and has

> no energy whatsoever

> and just whines and/or cries. I thought the

> Prednisone would work

> differently for . He normally does not feel

> this bad when he used to

> fever more often -- unless the fever went over 103

> ...

>

> When he was seen in late May, Dr. Shroff and Dr.

> Barron had given him a

> diagnosis of ; however, would not rule out a

> possible clinical

> diagnosis of HIDS or maybe even FMF. Since Mason is

> not completely

> " healthy " between fever episodes and his fevers

> haven't always been coming

> with his other symptoms, they can't be 100% yet its

> . Plus Mason has

> such a complex health history ... 4 intestinal

> surgeries due to sigmoid

> volvulus, polyps and chronic constipation. He also

> is asthmatic and has

> acid reflux ... again, they tell us these are not

> common in children.

> He also has chronic constipation ... all the time

> and is on Miralax for

> years now which is not common for . Without

> the Miralax he can't have

> a bowel movement. However, can very quickly have

> mega diarrhea! He also

> has a very hard time gaining weight, with or without

> having fevers and is

> considered failure to thrive.

>

> He doesn't go back to NIH until October 2-3.

>

> I'm just not sure what to think. Right now, I'm

> just upset because he's

> sick again ... he's on so many meds. that you'd

> think he should be flying

> ...

>

> I'm hoping he soon starts feeling better and the

> nausea passes.

>

> Any information on how the Prednisone is supposed to

> work, is greatly

> appreciated.

>

> Heidi

> Mommy to Mason, almost six years old, ?, 4

> intestinal surgeries, acid

> reflux and asthma

>

>

__________________________________________________

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  • 10 months later...
Guest guest

speaking of prednisone, have any of you been weaned off prednisone and have a

" psychotic episode " while weaning off or soon after?? what was it like? '

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

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Yikes, I am trying to wean off. What does this mean am I going to freak out or

something? I have been having weird dreams lately. And seem to startle really

easily.

Joy

renee' kirby <dakirb1@...> wrote:

speaking of prednisone, have any of you been weaned off prednisone and

have a " psychotic episode " while weaning off or soon after?? what was it like?

'

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

Need a vacation? Get great deals to amazing places on Travel.

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Guest guest

Joy wrote:

>

> >Yikes, I am trying to wean off. What does this mean am I going to

> freak out or

> something? I have been having weird dreams lately. And seem to startle

> really easily.

>

I didn't have any problems as I weaned off it very slowly. I went down

2.5 mgs. every week. Took quite a while to go down from 40 mgs. to

nothing that way, but that's how my doctor said I should do it. I have

bad nightmares now, but that didn't start until I started taking pain

medication.

Nina

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Guest guest

Well I am only on 5 now, can take 10mg if needed but I really want to try to get

off

this stuff.

Joy

Nina <ncampbell@...> wrote:

Joy wrote:

>

> >Yikes, I am trying to wean off. What does this mean am I going to

> freak out or

> something? I have been having weird dreams lately. And seem to startle

> really easily.

>

I didn't have any problems as I weaned off it very slowly. I went down

2.5 mgs. every week. Took quite a while to go down from 40 mgs. to

nothing that way, but that's how my doctor said I should do it. I have

bad nightmares now, but that didn't start until I started taking pain

medication.

Nina

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Guest guest

I've been weaned off Prednisone several times and have never had any psychotic

episode.

Patsy

El Mirage, AZ

DX 2005 Stage 1 PBC

AIH/SLE/RA/COPD

Just a woman of letters....

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  • 1 year later...

I'm on another round of prednisone. The insomnia I get from it is horrible.

Is there anything to be done about it? Would Tylenol PM help? Does anyone take

sleeping pills?

Sue

**************New MapQuest Local shows what's happening at your destination.

Dining, Movies, Events, News & more. Try it out

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>

> I'm on another round of prednisone. The insomnia I get from it is

horrible.

> Is there anything to be done about it? Would Tylenol PM help? Does

anyone take

> sleeping pills?

>

> Sue

> **************New MapQuest Local shows what's happening at your

destination.

> Dining, Movies, Events, News & more. Try it out

> (http://local.mapquest.com/?ncid=emlcntnew00000002)

>

>

>

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So glad you are doing better.  I'm also glad you are learning strategies for

dealing with the panic attacks.  Relaxation techniques have helped me, even

though I don't have panic attacks.  When one has difficulty breathing, panic and

fear can set in.  I try to use the relaxation techniques when I am feeling

stressed, before the breathing gets a little short.

 

Glad, too, that you have a doctor who is working with you to help you.

From: uca79iii <uca79iiigmail (DOT) com>

Subject: [ ] Re: question about prednisone

Date: Sunday, October 19, 2008, 9:31 PM

>

> I'm on another round of prednisone. The insomnia I get from it is

horrible.

> Is there anything to be done about it? Would Tylenol PM help? Does

anyone take

> sleeping pills?

>

> Sue

> ************ **New MapQuest Local shows what's happening at your

destination.

> Dining, Movies, Events, News & more. Try it out

> (http://local. mapquest. com/?ncid= emlcntnew0000000 2)

>

>

>

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Hi Sue

When I am on high doses or prednisone, I take Imovane (don't know the generic

name) to sleep at night. I find when I get down to about 20mg of Prednisone, I

am able to wean off the sleeping pills.

Pamela

__________________________________________________

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