Prednisone

June 15, 2006

Prednisone masks symptoms and stops the fevers. It does NOT cure the

disorder. It does not regulate the immune system.

Fran

September 18, 2006

> Our ID doctor told us that if it worked that our son most likely

> has

> . But with through research, I have found that is not

> necessarily

> true. My question - since the prednisone did work, is there any

> illnesses that can be ruled out?

NO

Prednisone has an effect on a few of the genetic fever disorders. It

is now used with TRAPS, HIDS, and other disorders which present

with periodic fevers. It is used in JRA and Lupus etc... So it is NOT

a good diagnostic tool.

It is a good medication treatment if it aborts fevers and does NOT

increase the cycles.

Fran A Bulone

Mom to ph 6 yrs old NOMID

Waxhaw, NC

Owner & Moderator Group

> Our ID doctor told us that if it worked that our son most likely

> has

> . But with through research, I have found that is not

> necessarily

> true. My question - since the prednisone did work, is there any

> illnesses that can be ruled out?

September 19, 2006

Thank you for your response. At least we know to keep looking.

As far as it working without risking shorter cycles, that yet remains to be

seen.

Thanks,

Melody

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

Get your own web address for just $1.99/1st yr. We'll help. Small

Business.

May 29, 2007

My daughters fevers were about once a month and then I started prednisone and

they came about every 12 days. We suffered through an episode without

prednisone and she went for a couple months without. She now hasn't had an

episode for probably 6-8 months!

prednisone

Hi,

Our almost 2 yr old has been getting fevers for a year and they were mostly 1

month apart with some 2 month breaks, and then we started using prednisone. It

was wonderful because we went from 3-4 days of 105-106 spikes and tons of

tylenol and motrin, to 1 day. BUT now his intervals have been 18 days, then 13

days, and now just 5 days. It really scares me. Has prednisone done this with

anyone else's child so drastically? For those of you that only use antipyretics,

do the intervals stay the same? Do you give your child tylenol and motrin every

3 hours constantly for several days?

Thanks,

carol, mom of Zach-5, Ian-22 mos () and Jayne, 4 mos.

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May 29, 2007

Carol,

There is lots of anecdotal information on the list that the prednisone will

do that. We only use the antipyretics with my daughter (3.5) - only motrin

as Tylenol doesn't seem to touch the fever. She gets it about every 6-7

hours (it should be good up to 8). That gets her fever down to about 101 or

so and she is pretty happy with 101 (down from 105 or so).

_____

From: [mailto: ] On Behalf Of c

vdl

Sent: Tuesday, May 29, 2007 10:25 AM

Subject: prednisone

Hi,

Our almost 2 yr old has been getting fevers for a year and they were mostly

1 month apart with some 2 month breaks, and then we started using

prednisone. It was wonderful because we went from 3-4 days of 105-106 spikes

and tons of tylenol and motrin, to 1 day. BUT now his intervals have been 18

days, then 13 days, and now just 5 days. It really scares me. Has prednisone

done this with anyone else's child so drastically? For those of you that

only use antipyretics, do the intervals stay the same? Do you give your

child tylenol and motrin every 3 hours constantly for several days?

Thanks,

carol, mom of Zach-5, Ian-22 mos () and Jayne, 4 mos.

__________________________________________________________Get the free

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protection.

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<http://new.toolbar./toolbar/features/norton/index.php>

/toolbar/features/norton/index.php

May 29, 2007

That's so good to know - I've been considering suffering through one. We have

extenuating circumstances though. Our son had an abnormal MRI of his brain and

we're now waiting on test results for obscure brain diseases. We're still

concerned that his high fevers (as high as 106.8 so far) did some damage and

can't stand to see him go through more fevers. On the flip side, my intuition

tells me that by fighting the fevers with prednisone, we're preventing the cycle

from finishing or preventing the body from fighting it itself.

Thank you for your story.

carol

prednisone

Hi,

Our almost 2 yr old has been getting fevers for a year and they were mostly 1

month apart with some 2 month breaks, and then we started using prednisone. It

was wonderful because we went from 3-4 days of 105-106 spikes and tons of

tylenol and motrin, to 1 day. BUT now his intervals have been 18 days, then 13

days, and now just 5 days. It really scares me. Has prednisone done this with

anyone else's child so drastically? For those of you that only use antipyretics,

do the intervals stay the same? Do you give your child tylenol and motrin every

3 hours constantly for several days?

Thanks,

carol, mom of Zach-5, Ian-22 mos () and Jayne, 4 mos.

____________ _________ _________ _________ _________ _________ _Get the free

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May 30, 2007

same thing happened to alfonso. we stopped the pred. threw one episode and

the next was hospital bad. good luck chicks

**************************************

See what's free at http://www.aol.com.

May 30, 2007

We were on prednisone and they started coming closer together, up to 5 days.

But be careful, when we stopped using it and suffered through the next episode

it was the worst one she has ever had!

Trish

c vdl <jczij@...> wrote:

That's so good to know - I've been considering suffering through one.

We have extenuating circumstances though. Our son had an abnormal MRI of his

brain and we're now waiting on test results for obscure brain diseases. We're

still concerned that his high fevers (as high as 106.8 so far) did some damage

and can't stand to see him go through more fevers. On the flip side, my

intuition tells me that by fighting the fevers with prednisone, we're preventing

the cycle from finishing or preventing the body from fighting it itself.

Thank you for your story.

carol

prednisone

Hi,

Our almost 2 yr old has been getting fevers for a year and they were mostly 1

month apart with some 2 month breaks, and then we started using prednisone. It

was wonderful because we went from 3-4 days of 105-106 spikes and tons of

tylenol and motrin, to 1 day. BUT now his intervals have been 18 days, then 13

days, and now just 5 days. It really scares me. Has prednisone done this with

anyone else's child so drastically? For those of you that only use antipyretics,

do the intervals stay the same? Do you give your child tylenol and motrin every

3 hours constantly for several days?

Thanks,

carol, mom of Zach-5, Ian-22 mos () and Jayne, 4 mos.

____________ _________ _________ _________ _________ _________ _Get the free

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http://new.toolbar. / toolbar/features /norton/index. php

May 30, 2007

Alfonso has been on prednisone for going on four years now. And the attacks

are unpredictable but he really needs it to stop the upward cycle I don't

think the brain can handle so many high fevers and at his age he does not bounce

back as fast as toddlers. any way you have to do whats best for the child " to

suffer or not to suffer that is the question. " take care chicks

**************************************

See what's free at http://www.aol.com.

May 30, 2007

So then what happened? Did the fevers stop or space out further? Did you use

the prednisone ever again? Thanks - I'm very curious.

carol

prednisone

Hi,

Our almost 2 yr old has been getting fevers for a year and they were mostly 1

month apart with some 2 month breaks, and then we started using prednisone. It

was wonderful because we went from 3-4 days of 105-106 spikes and tons of

tylenol and motrin, to 1 day. BUT now his intervals have been 18 days, then 13

days, and now just 5 days. It really scares me. Has prednisone done this with

anyone else's child so drastically? For those of you that only use antipyretics,

do the intervals stay the same? Do you give your child tylenol and motrin every

3 hours constantly for several days?

Thanks,

carol, mom of Zach-5, Ian-22 mos () and Jayne, 4 mos.

____________ _________ _________ _________ _________ _________ _Get the free

toolbar and rest assured with the added security of spyware protection.

http://new.toolbar. / toolbar/features /norton/index. php

May 30, 2007

Hi, thought I'd chime in. Last year we started my son on prednisone

and they came closer and closer together til 2 days apart. But we

kept giving it til we could see a definite pattern and luckily they

spread back apart. Now a year later they are completely

unpredictable. He will have 2 as close as 2 days apart and as far

as a month or occasionally 6 weeks....all on the prednisone, when

before the prednisone they were every 2-3 weeks. So for us it is

worth it as we too were 3-5 days at 104/105F every 2-3 weeks. One

dose of the prednisone knocks out fever and other pain in 3 hours.

Deanna

mom to Zachary 5yrs (), Kalla 3yrs, Micah 23mos, Maressa 3.5 mos

Huntsville, AL

>

> That's so good to know - I've been considering suffering

through one. We have extenuating circumstances though. Our son had

an abnormal MRI of his brain and we're now waiting on test results

for obscure brain diseases. We're still concerned that his high

fevers (as high as 106.8 so far) did some damage and can't stand to

see him go through more fevers. On the flip side, my intuition tells

me that by fighting the fevers with prednisone, we're preventing the

cycle from finishing or preventing the body from fighting it itself.

>

> Thank you for your story.

>

> carol

>

> prednisone

>

> Hi,

>

> Our almost 2 yr old has been getting fevers for a year and they

were mostly 1 month apart with some 2 month breaks, and then we

started using prednisone. It was wonderful because we went from 3-4

days of 105-106 spikes and tons of tylenol and motrin, to 1 day. BUT

now his intervals have been 18 days, then 13 days, and now just 5

days. It really scares me. Has prednisone done this with anyone

else's child so drastically? For those of you that only use

antipyretics, do the intervals stay the same? Do you give your child

tylenol and motrin every 3 hours constantly for several days?

>

> Thanks,

>

> carol, mom of Zach-5, Ian-22 mos () and Jayne, 4 mos.

>

> ____________ _________ _________ _________ _________ _________

_Get the free toolbar and rest assured with the added

security of spyware protection.

>

> http://new.toolbar. / toolbar/features /norton/index. php

>

May 30, 2007

No, we never used it again and the fevers went back to every 28 days like

before. We just got Sami's tonsill's out on May 8th, for other reasons. (Her

bloodwork is showing an infection someplace and they just can't find it) So far

we haven't had another fever (She was do on May 7th for one.) We're just taking

it one day at a time. Her tonsils came back negative for infection, but she

sure seems more healthy. She has more energy and doesn't melt in the heat.

Trish

c vdl <jczij@...> wrote:

So then what happened? Did the fevers stop or space out further? Did

you use the prednisone ever again? Thanks - I'm very curious.

carol

prednisone

Hi,

Our almost 2 yr old has been getting fevers for a year and they were mostly 1

month apart with some 2 month breaks, and then we started using prednisone. It

was wonderful because we went from 3-4 days of 105-106 spikes and tons of

tylenol and motrin, to 1 day. BUT now his intervals have been 18 days, then 13

days, and now just 5 days. It really scares me. Has prednisone done this with

anyone else's child so drastically? For those of you that only use antipyretics,

do the intervals stay the same? Do you give your child tylenol and motrin every

3 hours constantly for several days?

Thanks,

carol, mom of Zach-5, Ian-22 mos () and Jayne, 4 mos.

____________ _________ _________ _________ _________ _________ _Get the free

toolbar and rest assured with the added security of spyware protection.

http://new.toolbar. / toolbar/features /norton/index. php

May 30, 2007

Just thought I would also give my input. We started prednisone at the beginning

of each attack when Conyers doctor gave him the diagnoses. It was GREAT

to knock out the fevrs within an hour but then we noticed his episodes were more

frequent...21 days, 17 days, 8 days, 7 days. We used prednisone each time. I

am not sure what has happened since then but we are almost 5 weeks without an

episode. During this time we also started him on cimientine (sp). So not sure

what is going on with us but I am not complaining!

Deanna...I noticed you were from Huntsville. I am orginally from Decatur but

now live in Alabaster. Who is your doctor in H'ville. Just nice to know

someone close!

mom to Conyers (2.4 fevering 1yr.)

Maddie (2.4 no fevers yea!!)

>

> From: " deannabndr " <mattdeanna@...>

> Date: 2007/05/30 Wed PM 02:51:51 EDT

>

> Subject: Re: prednisone

>

> Hi, thought I'd chime in. Last year we started my son on prednisone

> and they came closer and closer together til 2 days apart. But we

> kept giving it til we could see a definite pattern and luckily they

> spread back apart. Now a year later they are completely

> unpredictable. He will have 2 as close as 2 days apart and as far

> as a month or occasionally 6 weeks....all on the prednisone, when

> before the prednisone they were every 2-3 weeks. So for us it is

> worth it as we too were 3-5 days at 104/105F every 2-3 weeks. One

> dose of the prednisone knocks out fever and other pain in 3 hours.

>

> Deanna

> mom to Zachary 5yrs (), Kalla 3yrs, Micah 23mos, Maressa 3.5 mos

> Huntsville, AL

>

> >

> > That's so good to know - I've been considering suffering

> through one. We have extenuating circumstances though. Our son had

> an abnormal MRI of his brain and we're now waiting on test results

> for obscure brain diseases. We're still concerned that his high

> fevers (as high as 106.8 so far) did some damage and can't stand to

> see him go through more fevers. On the flip side, my intuition tells

> me that by fighting the fevers with prednisone, we're preventing the

> cycle from finishing or preventing the body from fighting it itself.

> >

> > Thank you for your story.

> >

> > carol

> >

> > prednisone

> >

> > Hi,

> >

> > Our almost 2 yr old has been getting fevers for a year and they

> were mostly 1 month apart with some 2 month breaks, and then we

> started using prednisone. It was wonderful because we went from 3-4

> days of 105-106 spikes and tons of tylenol and motrin, to 1 day. BUT

> now his intervals have been 18 days, then 13 days, and now just 5

> days. It really scares me. Has prednisone done this with anyone

> else's child so drastically? For those of you that only use

> antipyretics, do the intervals stay the same? Do you give your child

> tylenol and motrin every 3 hours constantly for several days?

> >

> > Thanks,

> >

> > carol, mom of Zach-5, Ian-22 mos () and Jayne, 4 mos.

> >

> > ____________ _________ _________ _________ _________ _________

> _Get the free toolbar and rest assured with the added

> security of spyware protection.

> >

> > http://new.toolbar. / toolbar/features /norton/index. php

> >

June 24, 2007

Test it again and you will have better idea. See our file on n of 1

trials or Google it.

Prednisone ususally does not affect BP or raises it in PA unless you have GRA

and then it will return BP to normal. See my article on the Evolution of

PA.

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

**************************************

See what's free at http://www.aol.com.

June 24, 2007

I must be the the 'weird' case, because my bp has gone up everytime i

have taken prednisone. Maybe it has nothing to do with the prednisone

and it is just the migraine pain making my BP go up...

Kim in MN

>

> Test it again and you will have better idea. See our file on n of 1

> trials or Google it.

>

> Prednisone ususally does not affect BP or raises it in PA unless you

have GRA

> and then it will return BP to normal. See my article on the

Evolution of

> PA.

>

> May your pressure be low!

>

> Clarence E. Grim, BS, MS, MD

> Senior Consultant to Shared Care Research and Consulting, Inc.

> (sharedcareinc.com)

> Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

> Clinical Professor of Nursing, Univ. of WI, Milwaukee

>

> Specializing in Difficult to Control High Blood Pressure

> and the Physiology and History of Survival During

> Hard Times and Heart Disease today.

>

> **************************************

> See what's free at http://www.aol.com.

>

March 5, 2008

Regarding taking Prednisone on an empty stomach... I was very worried at first,

but then found that she didn't seem to have issues with it on an empty stomach.

Also, it seemed we sometimes gave the Prednisone before the throat and ulcers

were in full gear - so she seemed to eat better and have an appetite within a

day.

~Ginger

Systems Solutions Principal, CAR Financial Services

Work: (770) 828-1397

TREO: (404) 915-5035

March 5, 2008

my son was on the tablet kind (very bitter) and i would smash up in put it in a

spoonful or two of yogurt. I could usually get that to go down. good luck!

March 10, 2008

I can usually get my son to take it with applesauce or pudding. We now

have some kind that dissolves in your mouth and my son says it tastes

like sweet tarts. if i give prednisone and ibuprofen close together

his tummy hurts worse.

Good luck!

Kara

March 10, 2008

I can usually get my son to take it with applesauce or pudding. We now

have some kind that dissolves in your mouth and my son says it tastes

like sweet tarts. if i give prednisone and ibuprofen close together

his tummy hurts worse.

Good luck!

Kara

March 11, 2008

I can usually get my son to take it with applesauce or pudding. We now

have some kind that dissolves in your mouth and my son says it tastes

like sweet tarts. if i give prednisone and ibuprofen close together

his tummy hurts worse.

Good luck!

Kara

March 11, 2008

I can usually get my son to take it with applesauce or pudding. We now

have some kind that dissolves in your mouth and my son says it tastes

like sweet tarts. if i give prednisone and ibuprofen close together

his tummy hurts worse.

Good luck!

Kara

March 12, 2008

My son also got an upset stomach with the prendisone and then he refused to take

it at all because he said it tasted terrible He was prescribed the pill form

and I was told to crush it He would swallow it and a few minutes later vomit

Now I just give him the small pill to swallow and it does not seem to bother his

stomach He has been swallowing a pill since he was 3 and now at 4 he takes it

without a fight We tried many ways of getting it in him and this is the only

way that has worked for us

Good Luck

Amy

Riley - 4 (fevers since 9 months)

June 22, 2008

Hello Cassandra,

Are you able to go to Stanford? We see an dr there who believes in T & A for

. We are still trying Predisone for now, but will likely go the T & A route

soon, because Predisone has made the fevers come every 2 weeks or so, as opposed

to 5 weeks before Predisone. The trade off has been lower temps knocked out

quickly and no more febrile seizures. Our son is 3 and has had fevers since he

was 11 weeks old. He was diagnosed at Stanford when he was 2.

Who did you see at UCSF? I am wondering because my peditrician wants us to see a

dr there for a 2nd opinion, before we talk to an ENT about the T & A.

Thanks,

Ruthie

Mom to 3, PFPAP, and Gabby, 14 months

June 22, 2008

I would say have them actually READ all of the recent studies proving that T & A

is nearly 90-95% effective in curing . True, none of the studies have

followed the kids over 48 months, but for us, it is well worth a break for a

minimum of 4 years to have a T & A. My son had a T & A last month and there are not

even words to describe what impact this has had on him. He is a new child, full

of energy, a huge appetite, and his cheeks are flush with new life. It is like

he has awoken to a new world. A world full of energy and health. I literally

feel like those tonsils of his were a ball and chain dragging him down, sucking

his energy.

How can you bypass them? He's your child and if your answer is no, then they

need to drop it period the end. The doctors then need to figure out a plan B. We

never did any drugs other than Tylenol & Motrin. We were not interested in

giving our then not even 1yr old a steroid. I have been on steroids and the

side effects are nasty.

I can email you the most recent study, published earlier this year, just

let me know. Unlike the doctors you are seeing, mine thought T & A was the best

way to go. I did not start seeing this new doctor until my son was 22 months

old. I'm sure if I had started with her earlier, my son would have had surgery

at 18mos instead of 24 months.

You need to go with your gut; sometimes medicine needs to be a combination of

science and your gut instinct.

I have a question. Why would your doctor put your child on drugs before running

blood tests? This is insane Or do you mean invasive tests such as spinal and

bone marrow tests? Certainly my 1yr old hated being poked, but it was for his

own good. Before we did the T & A, we did genetic testing and a TON of other

blood tests for a host of disorders. Then, after they could find nothing

concrete, we started down the path. We needed those blood tests to rule

out anything more sinister.

From your posting, it sounds like you are correct in not having faith in these

doctors. Before I would ever even step foot in a new doctors office, I would

call the doctor first and make sure they were very familiar with Periodic Fever

Syndromes. I have no patience or time to deal with a doctor that knows less

than I do about PFS. I'm better off consulting this message board than some of

the bozo's I've spoken to on the phone. I might sound harsh, but it is quite a

frustrating process and my heart goes out to you.

Good Luck!

@...: cass_inong@...: Mon, 23 Jun 2008

00:03:34 +0000Subject: Prednisone

Hi everyone. We just took our daughter to UCSF, Infectious Disease Specialists.

All arrows point to , no surprise. The team of doctors there really want us

to try the prednisone treatment, which my husband and I are not wanting to do.

However, I feel like they will not explore other options (T & A) without us first

trying the steroids. I realize this is our choice, but getting this through to

the doctors is a frustrating process. The consensus there is basically that

there is no test to diagnose , but if she doesn't respond at all to the

steroids then they rule it out and do invasive blood tests. We also do not have

a good doctor here, at least not one who I have faith in, to help us manage the

steroid treatment or one who even knows about . I am just feeling a bit

frustrated, as I am sure you all have felt through this process. Any suggestions

on how to get the T & A approved by the doctor will be appreciated - meaning how I

can bipass the infectious disease department's recommendation for steriods

first. Thanks,CassandraJayden, 3 years

June 22, 2008