Prednisone Question

[Guest guest]

Hi ,

We used to use prednisone for my son drew, now age 3, about a year

and a half ago, worked brat at first, but slowly the episodes came

closer until they were 10 days. So we stopped, the first one was

the most difficult to get through, but he immediately spread to 3

weeks then 5 weeks, but he still fluctuates- but not as close as 10

days.

mom to Drew,age 3

> My daughters fevers were about 40 days apart. Then we gave her

prednisone. It went to 17 days apart for several episodes to 12

days apart. We have got to not give it to her so that they spread

out again. For anyone else that this has happened to ...after you

went thru an episode without using it did the fevers spread apart

right away?

>

>

>

[Guest guest]

, my son Joe has been on prednisone for since May 2005. He has taken

only 1 tsp each episode and instead of the 104-105 deg F fever lasting for 3-4

days, the fever usually goes away w/in a few hours. I first break the fever w/

Motrin, get him to eat something, and then give him prednisone (or else he will

throw it up on an empty stomach). Anyway, his episodes are anywhere from 3-5

weeks apart. Of the last 5 cycles, 4 of them were exactly 5 1/2 weeks apart.

We have not experienced the cycles coming quicker w/ this drug usage. We feel

very fortunate that it is working like it has. We were thrown off cycle this

month w/ an ear infection (I first thought the high fever was but

should've known better - he had a bad cold that spread to his right ear - his

1st ever ear infection tho and he's 33 months old) but otherwise, somewhat on

schedule and do not plan to stop prednisone usage at this time.

Kathleen

<steighner_41@...> wrote:

I was wondering for those of you that used a steroid for treatment,

when it made the cycle quicker, did you stop , and then did the cylces

go back to their normal time or did they stay at the quicker times?

thank you

[Guest guest]

Pretty much the same with us. My 2-year old son, gets his fevers

approximately every 45 days. One teaspoon of Prednisone knocks the fever back

down to " normal " . I had reservations about using Prednisone in the beginning

but it's the only thing that works for us.

Cordially,

Joe

Re: prednisone question

, my son Joe has been on prednisone for since May 2005. He has taken

only 1 tsp each episode and instead of the 104-105 deg F fever lasting for 3-4

days, the fever usually goes away w/in a few hours. I first break the fever w/

Motrin, get him to eat something, and then give him prednisone (or else he will

throw it up on an empty stomach). Anyway, his episodes are anywhere from 3-5

weeks apart. Of the last 5 cycles, 4 of them were exactly 5 1/2 weeks apart.

We have not experienced the cycles coming quicker w/ this drug usage. We feel

very fortunate that it is working like it has. We were thrown off cycle this

month w/ an ear infection (I first thought the high fever was but

should've known better - he had a bad cold that spread to his right ear - his

1st ever ear infection tho and he's 33 months old) but otherwise, somewhat on

schedule and do not plan to stop prednisone usage at this time.

Kathleen

<steighner_41@...> wrote:

I was wondering for those of you that used a steroid for treatment,

when it made the cycle quicker, did you stop , and then did the cylces

go back to their normal time or did they stay at the quicker times?

thank you

[Guest guest]

I was wondering the same thing. We just started prednisone with our

last episode and they were coming every 2-3 weeks. Now it's back just

1.5 weeks later. My husband wants us to keep giving it to him a

couple more times to see if it keeps coming this quickly since we just

started.

Deanna

mom to Zachary 4.5 yrs

Kalla 2.5yrs

Micah 9.5 mos

Huntsville, AL

>

> I was wondering for those of you that used a steroid for treatment,

> when it made the cycle quicker, did you stop , and then did the

cylces

> go back to their normal time or did they stay at the quicker times?

>

>

> thank you

>

[Guest guest]

Raquel,

My daughter doesn't have lots of experience with Prednisone, however it is a great receiver of pain. My daughter has had prednisone bursts. She would take 60mg/day for 5 days, and then nothing. I guess maybe it shocked the system. We have done that twice in the 5 years of diagnosis. However I do know that there are several people on this board that have far more experience and a love hate relationship with the drug. Be thankful for today she isn't in pain.

and Allie (11 poly)

From: [mailto: ] On Behalf Of raquels_cakesSent: Friday, September 21, 2007 10:29 AM Subject: prednisone question

When I called my dr about alexis still being in pain he called in prednisone. She has only had one dose and is acting a little better already. YEA!!! I have read a little on the internet that steroids are like sweeping the dirt under the rug, it looks better and feels better but the problem is still there. I don't want is to be in pain but I also don't want to go to the rheumy with her feeling fine and he thinks there is not much concern. Surely an experianced dr can realize the differance. Hopefully he won't think that I was just a over exagerating mother.What has others experianced with steroids? I'm still afraid that the pain won't be relieved much. We'll see. She went back to school today and that was great cause she was ready and I don't have to feel like I had to make her go. Is there alot of school missed with this disease?Also I was wondering if there was much hospitalization with this disease and for what. I know I'm acting like she has a diagnosis but I really feel like that is what will happen. Everyone has taken their child to the dr knowing they had an ear infection or pneumonia or something and it turned out he\she was fine. But this feel so different. Especially since she has developed the morning stiffness and was progressivly getting worse. Unfortunately. Maybe I'm expecting the worse and will be suprised.ThanksRaquel

[Guest guest]

How much pred. did he prescribe and for how long?? Pred is a very potent antiinflamatory steroid and the fact that she is having a positive response to it is def. indicative that she has some inflammatory process/disease going on. That is a useful diagnostic point right there. Yes, it is sorta like sweeping the problem under the rug but in reality, it's helping her with the pain for right now until you can get more answers. Just remember that .. well I can tell you from personal experience, anytime I have been on Prednisone, I felt SOOOOO good, I would push myself and overdo it because I felt FINE and when I came off, I would immediately have a really bad flare. It has always been hard for me to come off of prednisone and i know this is a common reaction for a lot of people. When I got older, I learned to keep treating my body as if I wasn't on pred... taking my rests.. not overdoing it, etc and that helped a great deal in preventing the post-pred flare ups. In terms of missing school and hospitalization. Getting hospitalized isn't common with JRA unless it's the Systemic type and that is usually very very explosive with high high fevers and organ involvement, thus the need for hospitalization. Attendance can be difficult in the early mornings with stiffness but often we work our routines that help us get to school. When I was in school, I had a IEP (Individualized Education Plan) and because of the way my school did classes, I was able to have an elective first period so that I was able to be late to it or not attend at all if I couldn't make it there. In addition, mom and I did things like hot baths soaks and massage, stretching in the morning and while it takes a little longer to do, it made things much better during the day and also allowed me to make it to classes on time. I'm sure it all must seem overwhelming at the moment but it's usually manageable in time. In terms of feeling like maybe you're reading into stuff too much.. I don't know... Mothers have mothers instinct/intuition, etc... I would say trust that... and some doctors.... they will understand and some won't.... I hope the rheumatologist will see what you see but if not, you can persist... as others have suggests, keep a notebook, record any findings... such as your daughters positive response to pred, how long her stiffness is, what her pain levels are, where, how they travel.. have her keep a notebook of her information that is significant to her. What helps it... makes it better.... when does it feel better.. .worse? If you notice any rashes or swelling, measure it with a tape measure, take pictures.. sure it all sounds a little obsessive and extreme but I think these things help a whole lot because Rheumatic diseases are often difficult to diagnose as they are diagnoses of exclusion.. that is... there is no specific test that says... oh, you have JRA.... it's ruling out other possibilities so the more information recorded over time, the better for any good doctor that wants to find the answer. I think that's 'all' I had to say. Watch that prednisone.. can make you moody too..... and hungry.... for salty stuff... IssadoraOn 9/21/07,

Ray <leslie@...> wrote:

Raquel,

My daughter doesn't have lots of experience with Prednisone, however it is a great receiver of pain. My daughter has had prednisone bursts. She would take 60mg/day for 5 days, and then nothing. I guess maybe it shocked the system. We have done that twice in the 5 years of diagnosis. However I do know that there are several people on this board that have far more experience and a love hate relationship with the drug. Be thankful for today she isn't in pain.

and Allie (11 poly)

From: [mailto: ] On Behalf Of raquels_cakesSent: Friday, September 21, 2007 10:29 AM Subject: prednisone question

When I called my dr about alexis still being in pain he called in prednisone. She has only had one dose and is acting a little better already. YEA!!! I have read a little on the internet that steroids are like sweeping the dirt under the rug, it looks better and feels better but the problem is still there. I don't want is to be in pain but I also don't want to go to the rheumy with her feeling fine and he thinks there is not much concern. Surely an experianced dr can realize the differance. Hopefully he won't think that I was just a over exagerating mother.What has others experianced with steroids? I'm still afraid that the pain won't be relieved much. We'll see. She went back to school today and that was great cause she was ready and I don't have to feel like I had to make her go. Is there alot of school missed with this disease?Also I was wondering if there was much hospitalization with this disease and for what. I know I'm acting like she has a diagnosis but I really feel like that is what will happen. Everyone has taken their child to the dr knowing they had an ear infection or pneumonia or something and it turned out he\she was fine. But this feel so different. Especially since she has developed the morning stiffness and was progressivly getting worse. Unfortunately. Maybe I'm expecting the worse and will be suprised.ThanksRaquel

-- " I am not sick. I am broken. But I am happy as long as I can paint. " --Frida Kahlo

[Guest guest]

My understanding of the way pred is used

is to be a quick fix to relieve the pain and inflammation. It is not a cure

all, and the problem is still there. For example, when it was used for my son,

for his asthma, it was for a short time to get it under control when it had

flared badly and he needed his Proventil way too often. They used it to stop

the immediate problem until the med that actually worked on the disease could

kick in and stop the flares. So too with arthritis. It is used to get the pain

and flare under control quicker, until a better way of treating the disease can

kick in, for example by using a DMARD like methotrexate or sulfasalazine, or Remicade

to name just a few. I would keep a journal of all she has gone through, so when

you get to the dr you remember everything.

has been lucky and did not miss too

much school. He was often exhausted when he got home and needed to nap, but he

did stay in school most of the time. He was allowed to rest if needed, but he

rarely did that. Once he was on the meds, he did not get sick very often but

when he did, he was quite ill. His asthma settled down a lot when he was on the

meds for arthritis. So that helped to keep him in school. had no

hospitalizations related to his arthritis. Lots of dr visits though, and that

sometimes would cut into school, but when the dr changed his hours to the

afternoon that was less of an issue.

Right now it is hard for you because you

do not have a diagnosis and no real treatment plan. I think things will feel

more under control for you and is once you have a plan and can feel like

you are moving in a forward direction. Believe me, we have all been where you

are. I did not believe had arthritis, even after the rheumy did the exam

at the first visit and told us so. I kept thinking the blood test would show

she was wrong; I was thinking that there was a blood test for arthritis. I did

not understand until I called for the results and she started talking about

and treatments. I can remember saying to her, “Does he really have

arthritis?” She explained that yes, from her physical exam of him he did.

I think it is good that you continue

to do research. The more you know, the better you can advocate for your child. When

she sees the dr, he/she will know that is has been on pred (I assume the dr

you are seeing is the one who prescribed it) and will be able to do the exam

with that in mind. Keep asking any questions you have and feel free to vent

here. We can all relate, in one way or another. Michele ( 20,

spondy)

From: [mailto: ] On Behalf Of raquels_cakes

Sent: Friday, September 21, 2007

10:29 AM

Subject: prednisone question

When I called my dr about alexis still being in pain

he called in

prednisone. She has only had one dose and is acting a little better

already. YEA!!! I have read a little on the internet that steroids

are like sweeping the dirt under the rug, it looks better and feels

better but the problem is still there. I don't want is to be in

pain but I also don't want to go to the rheumy with her feeling fine

and he thinks there is not much concern. Surely an experianced dr

can realize the differance. Hopefully he won't think that I was just

a over exagerating mother.

What has others experianced with steroids? I'm still afraid that the

pain won't be relieved much. We'll see. She went back to school

today and that was great cause she was ready and I don't have to feel

like I had to make her go. Is there alot of school missed with this

disease?

Also I was wondering if there was much hospitalization with this

disease and for what. I know I'm acting like she has a diagnosis but

I really feel like that is what will happen. Everyone has taken

their child to the dr knowing they had an ear infection or pneumonia

or something and it turned out he\she was fine. But this feel so

different. Especially since she has developed the morning stiffness

and was progressivly getting worse. Unfortunately. Maybe I'm

expecting the worse and will be suprised.

Thanks

Raquel

[Guest guest]

Yesm Pred is a temporary solution for short term as the side effects and risk factors are too severe to use in the long term. I was on 60mg of prednisone once for about 3 months time due to asthma and arthritis flaring together... ugh... .it was horrible.. i couldnt come off of the pred... and as a result.... I became diabetic soon after that.. it pushed my system already prone to diabetes into it.... it's a TERRIBLE medication that makes you feel WONDERFUL.... sigh... at least for me.... it helps so much ... it's like im normal when im on it... Anyways..... it's always best to be very very cautious.... im wondering how much the doctor put is on and for how long. Whatever the case, it's great for short spurts when things are too much to handle but def. not something to rely on. Butterfly WarriorOn 9/21/07, Tepper, Michele <MTepper@...> wrote:

My understanding of the way pred is used

is to be a quick fix to relieve the pain and inflammation. It is not a cure

all, and the problem is still there. For example, when it was used for my son,

for his asthma, it was for a short time to get it under control when it had

flared badly and he needed his Proventil way too often. They used it to stop

the immediate problem until the med that actually worked on the disease could

kick in and stop the flares. So too with arthritis. It is used to get the pain

and flare under control quicker, until a better way of treating the disease can

kick in, for example by using a DMARD like methotrexate or sulfasalazine, or Remicade

to name just a few. I would keep a journal of all she has gone through, so when

you get to the dr you remember everything.

has been lucky and did not miss too

much school. He was often exhausted when he got home and needed to nap, but he

did stay in school most of the time. He was allowed to rest if needed, but he

rarely did that. Once he was on the meds, he did not get sick very often but

when he did, he was quite ill. His asthma settled down a lot when he was on the

meds for arthritis. So that helped to keep him in school. had no

hospitalizations related to his arthritis. Lots of dr visits though, and that

sometimes would cut into school, but when the dr changed his hours to the

afternoon that was less of an issue.

Right now it is hard for you because you

do not have a diagnosis and no real treatment plan. I think things will feel

more under control for you and is once you have a plan and can feel like

you are moving in a forward direction. Believe me, we have all been where you

are. I did not believe had arthritis, even after the rheumy did the exam

at the first visit and told us so. I kept thinking the blood test would show

she was wrong; I was thinking that there was a blood test for arthritis. I did

not understand until I called for the results and she started talking about

and treatments. I can remember saying to her, "Does he really have

arthritis?" She explained that yes, from her physical exam of him he did.

I think it is good that you continue

to do research. The more you know, the better you can advocate for your child. When

she sees the dr, he/she will know that is has been on pred (I assume the dr

you are seeing is the one who prescribed it) and will be able to do the exam

with that in mind. Keep asking any questions you have and feel free to vent

here. We can all relate, in one way or another. Michele ( 20,

spondy)

From: @group

s.com [mailto: @group

s.com] On Behalf Of raquels_cakes

Sent: Friday, September 21, 2007

10:29 AM

Subject: prednisone question

When I called my dr about alexis still being in pain

he called in

prednisone. She has only had one dose and is acting a little better

already. YEA!!! I have read a little on the internet that steroids

are like sweeping the dirt under the rug, it looks better and feels

better but the problem is still there. I don't want is to be in

pain but I also don't want to go to the rheumy with her feeling fine

and he thinks there is not much concern. Surely an experianced dr

can realize the differance. Hopefully he won't think that I was just

a over exagerating mother.

What has others experianced with steroids? I'm still afraid that the

pain won't be relieved much. We'll see. She went back to school

today and that was great cause she was ready and I don't have to feel

like I had to make her go. Is there alot of school missed with this

disease?

Also I was wondering if there was much hospitalization with this

disease and for what. I know I'm acting like she has a diagnosis but

I really feel like that is what will happen. Everyone has taken

their child to the dr knowing they had an ear infection or pneumonia

or something and it turned out he\she was fine. But this feel so

different. Especially since she has developed the morning stiffness

and was progressivly getting worse. Unfortunately. Maybe I'm

expecting the worse and will be suprised.

Thanks

Raquel

-- " I am not sick. I am broken. But I am happy as long as I can paint. " --Frida Kahlo

[Guest guest]

I am glad to hear that is is feeling better and that the pred is helping. Steriods can have a very quick, dramatic effect when used to treat many illnesses. I think someone mentioned the "love/hate relationship" that many have with steriods. My son was diagnosed a little over 6 years ago with systemic onsent JRA. Prior to that he had been diagnosed with a kidney disorder for which steriods was the medication of choice. He had been on the steriods twice (about 4 - 6 weeks each time) for the kidney disorder prior to his JRA diagnosis. He has been on steriods ever since. He has been on very high doses in the past to manage his disease, and tapering down to very low doses. In the past, before we found other combination of meds that allowed us to keep his pred at a lower dose we would often find ourselves continuing to taper slowly - and he would do well for a long time and then a mg drop would result in a flare - but who knows? He often had sidnificant flares when on a large "maintenance" dose. Currently, he is on a very small dose because his body isn't making cortisol, what he takes now is equivalent to what his body would manufacture on it's own. The plan is to slowly taper this current dose and remove the steriods completely. Often, for Systemic onset kids, steriods are the only thing that can get a flare under control. I know that based on his illness in the first six month, had it not been for the steriod and cyclosporine combination, my son would probably not be alive. Also, his first 2 -3 years in this illness would have been much worse than they were - and they were bad enough with the steriods. I also know that many of 's current health issues would not be issues, were it now for the fact that he was on/ has been on steriods for such a long time and at such frequent high doses in the early years. I firmly believe that additional meds should have been tried earlier (much earlier) to attempt to gain control of his illness and remove the need for steriods. This belief led to my changing physicians for my son. With that said, in the first two and a half years of 's illness his systemic flares were very severe, with long term fevers, multiple organ involvement and labwork all over the place. It was 1 1/2 - 2 years before his labwork came back in the normal range - I laughed out loud when I saw the lab report because it looked so strange without all the **** and "H"s and "L"s and other warning symbols. (less than a week after those normal results and we dropped the steriods 1 mg, was back in the hospital with one of his worse flares.).

It can all come down to a quality of life issue - there was a long time when I felt that the best decision was to continue them, as without them wasn't functional. The time came when the side affects began to affect his quality of life equally - and it was time to force the move to other medications.

Should is be diagnosed with JRA when you see the rheumy (or after subsequent visits - it does take awhile for the diagnosis - you and the rheumy will need to discuss a plan of action to find the right medication/s for is - and come up with a plan to taper the steriod dose, and eventually remove the steriods altogether. The side affects are numerous and can be very severe in the affect on our children's overall health and well being. Short term, the side affects are less invasive - though mood swings and increased appetite can come on really quickly. Treatment bursts over a period of 4 -5 days can be the best way to go - and doesn't require a "tapering" period, and can be very effective. I have also read where every - other day dosing if the need is more long term can lower the risk of many of the side affects.

The treatment for the different types of JRA can be different - and it can take awhile to come up with the right combination of meds for each child. As I said, my son was diagnosed with systemic onset JRA - and he has been hospitalized due to his illness many times and missed a lot of school. Things have been in better control and it has been over two years since he was hospitalized. He did miss a lot of school in K through 2nd grade due hospitalizations and missed quite a bit in 3rd grade due to his illness & appts. Last year was much better and overall he is doing very well.

Based on your description of is's symtoms, I wouldn't suspect that she has systemic onset. I hope that you find answers when you see the rheumy and that she continues to improve.

Val

Rob's Mom (9, systemic)

prednisone question

When I called my dr about alexis still being in pain he called in

prednisone. She has only had one dose and is acting a little better

already. YEA!!! I have read a little on the internet that steroids

are like sweeping the dirt under the rug, it looks better and feels

better but the problem is still there. I don't want is to be in

pain but I also don't want to go to the rheumy with her feeling fine

and he thinks there is not much concern. Surely an experianced dr

can realize the differance. Hopefully he won't think that I was just

a over exagerating mother.

What has others experianced with steroids? I'm still afraid that the

pain won't be relieved much. We'll see. She went back to school

today and that was great cause she was ready and I don't have to feel

like I had to make her go. Is there alot of school missed with this

disease?

Also I was wondering if there was much hospitalization with this

disease and for what. I know I'm acting like she has a diagnosis but

I really feel like that is what will happen. Everyone has taken

their child to the dr knowing they had an ear infection or pneumonia

or something and it turned out he\she was fine. But this feel so

different. Especially since she has developed the morning stiffness

and was progressivly getting worse. Unfortunately. Maybe I'm

expecting the worse and will be suprised.

Thanks

Raquel

Email and AIM finally together. You've gotta check out free AOL Mail!

[Guest guest]

Thanks for all the responses. is is on Prednisolon sol 15mg/5ml

2 t twice a day for 3 days 1 t twice a day for 3 days and then 1/2 t

twice a day for 3 days. She was tired when she came home but not as

much pain and ready to go play. Will she continue to feel these

effects for weeks, months, or what? Let see what she does tonight

after she get back from her friends. I think school was good for her

today.

Thanks

Raquel

> How much pred. did he prescribe and for how long?? Pred is a very

potent

> antiinflamatory steroid and the fact that she is having a positive

response

> to it is def. indicative that she has some inflammatory

process/disease

> going on. That is a useful diagnostic point right there.

>

> Yes, it is sorta like sweeping the problem under the rug but in

reality,

> it's helping her with the pain for right now until you can get more

answers.

> Just remember that .. well I can tell you from personal experience,

anytime

> I have been on Prednisone, I felt SOOOOO good, I would push myself

and

> overdo it because I felt FINE and when I came off, I would

immediately have

> a really bad flare. It has always been hard for me to come off of

prednisone

> and i know this is a common reaction for a lot of people. When I

got older,

> I learned to keep treating my body as if I wasn't on pred... taking

my

> rests.. not overdoing it, etc and that helped a great deal in

preventing the

> post-pred flare ups.

>

> In terms of missing school and hospitalization. Getting

hospitalized isn't

> common with JRA unless it's the Systemic type and that is usually

very very

> explosive with high high fevers and organ involvement, thus the

need for

> hospitalization.

>

> Attendance can be difficult in the early mornings with stiffness

but often

> we work our routines that help us get to school. When I was in

school, I had

> a IEP (Individualized Education Plan) and because of the way my

school did

> classes, I was able to have an elective first period so that I was

able to

> be late to it or not attend at all if I couldn't make it there. In

addition,

> mom and I did things like hot baths soaks and massage, stretching

in the

> morning and while it takes a little longer to do, it made things

much better

> during the day and also allowed me to make it to classes on time.

>

> I'm sure it all must seem overwhelming at the moment but it's

usually

> manageable in time.

>

> In terms of feeling like maybe you're reading into stuff too much..

I don't

> know... Mothers have mothers instinct/intuition, etc... I would say

trust

> that... and some doctors.... they will understand and some

won't.... I hope

> the rheumatologist will see what you see but if not, you can

persist... as

> others have suggests, keep a notebook, record any findings... such

as your

> daughters positive response to pred, how long her stiffness is,

what her

> pain levels are, where, how they travel.. have her keep a notebook

of her

> information that is significant to her. What helps it... makes it

better....

> when does it feel better.. .worse? If you notice any rashes or

swelling,

> measure it with a tape measure, take pictures.. sure it all sounds

a little

> obsessive and extreme but I think these things help a whole lot

because

> Rheumatic diseases are often difficult to diagnose as they are

diagnoses of

> exclusion.. that is... there is no specific test that says... oh,

you have

> JRA.... it's ruling out other possibilities so the more information

recorded

> over time, the better for any good doctor that wants to find the

answer.

>

> I think that's 'all' I had to say.

>

> Watch that prednisone.. can make you moody too..... and hungry....

for salty

> stuff...

>

> Issadora

>

> On 9/21/07, Ray <leslie@...> wrote:

> >

> > Raquel,

> >

> > My daughter doesn't have lots of experience with Prednisone,

however it is

> > a great receiver of pain. My daughter has had prednisone

bursts. She would

> > take 60mg/day for 5 days, and then nothing. I guess maybe it

shocked the

> > system. We have done that twice in the 5 years of diagnosis.

However I do

> > know that there are several people on this board that have far

more

> > experience and a love hate relationship with the drug. Be

thankful for

> > today she isn't in pain.

> >

> > and Allie (11 poly)

> >

[Guest guest]

Aww.. short burst... it's likely that when she comes off, she might have an increase of pain or a return to what she already had going on at the same level it was at. That can be very frustrated.. again, record what happens. It's good he has her on a good little taper too. The effect's of pred don't last long.. pretty much for as long as you're on it in this type of situation. Sometimes they hit you with an injection of it in the hospital or into the joint and that can last a long time but that's a completely different scenario/situation. Glad school went well AND she was ready to play with her friends! That's great On 9/21/07, raquels_cakes <

raquels_cakes@...> wrote:

Thanks for all the responses. is is on Prednisolon sol 15mg/5ml

2 t twice a day for 3 days 1 t twice a day for 3 days and then 1/2 t

twice a day for 3 days. She was tired when she came home but not as

much pain and ready to go play. Will she continue to feel these

effects for weeks, months, or what? Let see what she does tonight

after she get back from her friends. I think school was good for her

today.

Thanks

Raquel

> How much pred. did he prescribe and for how long?? Pred is a very

potent

> antiinflamatory steroid and the fact that she is having a positive

response

> to it is def. indicative that she has some inflammatory

process/disease

> going on. That is a useful diagnostic point right there.

>

> Yes, it is sorta like sweeping the problem under the rug but in

reality,

> it's helping her with the pain for right now until you can get more

answers.

> Just remember that .. well I can tell you from personal experience,

anytime

> I have been on Prednisone, I felt SOOOOO good, I would push myself

and

> overdo it because I felt FINE and when I came off, I would

immediately have

> a really bad flare. It has always been hard for me to come off of

prednisone

> and i know this is a common reaction for a lot of people. When I

got older,

> I learned to keep treating my body as if I wasn't on pred... taking

my

> rests.. not overdoing it, etc and that helped a great deal in

preventing the

> post-pred flare ups.

>

> In terms of missing school and hospitalization. Getting

hospitalized isn't

> common with JRA unless it's the Systemic type and that is usually

very very

> explosive with high high fevers and organ involvement, thus the

need for

> hospitalization.

>

> Attendance can be difficult in the early mornings with stiffness

but often

> we work our routines that help us get to school. When I was in

school, I had

> a IEP (Individualized Education Plan) and because of the way my

school did

> classes, I was able to have an elective first period so that I was

able to

> be late to it or not attend at all if I couldn't make it there. In

addition,

> mom and I did things like hot baths soaks and massage, stretching

in the

> morning and while it takes a little longer to do, it made things

much better

> during the day and also allowed me to make it to classes on time.

>

> I'm sure it all must seem overwhelming at the moment but it's

usually

> manageable in time.

>

> In terms of feeling like maybe you're reading into stuff too much..

I don't

> know... Mothers have mothers instinct/intuition, etc... I would say

trust

> that... and some doctors.... they will understand and some

won't.... I hope

> the rheumatologist will see what you see but if not, you can

persist... as

> others have suggests, keep a notebook, record any findings... such

as your

> daughters positive response to pred, how long her stiffness is,

what her

> pain levels are, where, how they travel.. have her keep a notebook

of her

> information that is significant to her. What helps it... makes it

better....

> when does it feel better.. .worse? If you notice any rashes or

swelling,

> measure it with a tape measure, take pictures.. sure it all sounds

a little

> obsessive and extreme but I think these things help a whole lot

because

> Rheumatic diseases are often difficult to diagnose as they are

diagnoses of

> exclusion.. that is... there is no specific test that says... oh,

you have

> JRA.... it's ruling out other possibilities so the more information

recorded

> over time, the better for any good doctor that wants to find the

answer.

>

> I think that's 'all' I had to say.

>

> Watch that prednisone.. can make you moody too..... and hungry....

for salty

> stuff...

>

> Issadora

>

> On 9/21/07, Ray <leslie@...> wrote:

> >

> > Raquel,

> >

> > My daughter doesn't have lots of experience with Prednisone,

however it is

> > a great receiver of pain. My daughter has had prednisone

bursts. She would

> > take 60mg/day for 5 days, and then nothing. I guess maybe it

shocked the

> > system. We have done that twice in the 5 years of diagnosis.

However I do

> > know that there are several people on this board that have far

more

> > experience and a love hate relationship with the drug. Be

thankful for

> > today she isn't in pain.

> >

> > and Allie (11 poly)

> >

-- " I am not sick. I am broken. But I am happy as long as I can paint. " --Frida Kahlo

[Guest guest]

HI Raquel-You've had great responses already.. I just wanted to add in for your last questions. I think it's great that your doc prescribed the pred with a taper schedule.... it's a good thing to be used to, as you will be seeking it every time your child needs pred. As Val mentioned, it's not always easy or possible to get off it, but it is always the goal for sure.The Pred is like a kick in the butt for inflammation. When my daughter was diagnosed she was so stiff, she could not even lift her head or move her neck. Two doses of pred and she was down on the floor playing. It's unpredictable how long the effect will last when the pred is out of the system. Sometimes, it can be used in a short "burst" to knock down a flare... and then things might be well for weeks, months or even years. For others, tapering will bring a flare back full force. There's unfortunately no way to predict...though you will certainly come to

know is' symptoms well enough to get a mom-sense of what is coming.For now, just try to appreciate the good days and the playing without worrying about what's around the corner. It's easier said than done.... but worth saying anyway!I hope that things turn around for is soon-Best wishes-Colleen (mom to Caitlin, 9, systemic JIA)raquels_cakes <raquels_cakes@...> wrote: Thanks for all the responses. is is on Prednisolon sol 15mg/5ml 2 t twice a day for 3 days 1 t twice a day for 3

days and then 1/2 t twice a day for 3 days. She was tired when she came home but not as much pain and ready to go play. Will she continue to feel these effects for weeks, months, or what? Let see what she does tonight after she get back from her friends. I think school was good for her today. Thanks Raquel > How much pred. did he prescribe and for how long?? Pred is a very potent > antiinflamatory steroid and the fact that she is having a positive response > to it is def. indicative that she has some inflammatory process/disease > going on. That is a useful diagnostic point right there. > > Yes, it is sorta like sweeping the problem under the rug but in reality, > it's helping her with the pain for right now until you can get more answers. > Just remember that .. well I can tell you from personal experience, anytime > I have been on

Prednisone, I felt SOOOOO good, I would push myself and > overdo it because I felt FINE and when I came off, I would immediately have > a really bad flare. It has always been hard for me to come off of prednisone > and i know this is a common reaction for a lot of people. When I got older, > I learned to keep treating my body as if I wasn't on pred... taking my > rests.. not overdoing it, etc and that helped a great deal in preventing the > post-pred flare ups. > > In terms of missing school and hospitalization. Getting hospitalized isn't > common with JRA unless it's the Systemic type and that is usually very very > explosive with high high fevers and organ involvement, thus the need for > hospitalization. > > Attendance can be difficult in the early mornings with stiffness but often > we work our routines that help us get

to school. When I was in school, I had > a IEP (Individualized Education Plan) and because of the way my school did > classes, I was able to have an elective first period so that I was able to > be late to it or not attend at all if I couldn't make it there. In addition, > mom and I did things like hot baths soaks and massage, stretching in the > morning and while it takes a little longer to do, it made things much better > during the day and also allowed me to make it to classes on time. > > I'm sure it all must seem overwhelming at the moment but it's usually > manageable in time. > > In terms of feeling like maybe you're reading into stuff too much.. I don't > know... Mothers have mothers instinct/intuition, etc... I would say trust > that... and some doctors.... they will understand and some won't.... I hope > the

rheumatologist will see what you see but if not, you can persist... as > others have suggests, keep a notebook, record any findings... such as your > daughters positive response to pred, how long her stiffness is, what her > pain levels are, where, how they travel.. have her keep a notebook of her > information that is significant to her. What helps it... makes it better.... > when does it feel better.. .worse? If you notice any rashes or swelling, > measure it with a tape measure, take pictures.. sure it all sounds a little > obsessive and extreme but I think these things help a whole lot because > Rheumatic diseases are often difficult to diagnose as they are diagnoses of > exclusion.. that is... there is no specific test that says... oh, you have > JRA.... it's ruling out other possibilities so the more information recorded > over time, the

better for any good doctor that wants to find the answer. > > I think that's 'all' I had to say. > > Watch that prednisone.. can make you moody too..... and hungry.... for salty > stuff... > > Issadora > > On 9/21/07, Ray <leslie@...> wrote: > > > > Raquel, > > > > My daughter doesn't have lots of experience with Prednisone, however it is > > a great receiver of pain. My daughter has had prednisone bursts. She would > > take 60mg/day for 5 days, and then nothing. I guess maybe it shocked the > > system. We have done that twice in the 5 years of diagnosis. However I do > > know that there are several people on this board that have far more > > experience and a love hate relationship with the drug. Be thankful for > > today she isn't in pain.

> > > > and Allie (11 poly) > >

Fussy? Opinionated? Impossible to please? Perfect. Join 's user panel and lay it on us.

[Guest guest]

Hello a,

The first few months we used it, predisone did not increase fever frequency for

. However, over time the fever frequency increased and now come every 2

weeks, sometimes sooner.

Ruthie

3,

[Guest guest]

Hi a - I noticed you are not getting many (if any!) responses to your

question about prednisone NOT increasing frequency of fevers so I had to chime

in on our experiences.

 

Our son Joe has been experiencing for about 4 years for a total of 51

episodes over that time period.  We are regular users of prednisone and we had a

spell 2 summers ago where the frequency increased anywhere from 10-17 days.  I

was in panic mode because up until then, the frequency was anywhere from 3 - 6

weeks and we didn't mind the limited use of the steriod; we felt approx 2 tsp

pred. every few weeks for a day or 2 was much better than bottle after bottle of

motrin and tylenol.  After eliminating the use of pred. for about 2 episodes at

the end of that summer, Joe's fevers spaced back out to the normal 3 - 6

weeks.  This increased frequency pattern repeated itself this past summer while

we tried cimetidine (w/ no appreciable difference or improvement in his

fevers).  I'm wondering now if the seasonal increased frequency was

weather-related instead of prednisone-related!

 

Therefore, short answer to your question, we continue to be regular users of

prednisone and have not noticed PERMANENT increases in the frequency of fevers.

 

Please write if any further questions.

Kathleen

mom of Joe, almost 5 w/ , and Ben, age 3

Chattanooga, TN

kjbcunningham@...

[Guest guest]

Hi a - I noticed you are not getting many (if any!) responses to your

question about prednisone NOT increasing frequency of fevers so I had to chime

in on our experiences.

 

Our son Joe has been experiencing for about 4 years for a total of 51

episodes over that time period.  We are regular users of prednisone and we had a

spell 2 summers ago where the frequency increased anywhere from 10-17 days.  I

was in panic mode because up until then, the frequency was anywhere from 3 - 6

weeks and we didn't mind the limited use of the steriod; we felt approx 2 tsp

pred. every few weeks for a day or 2 was much better than bottle after bottle of

motrin and tylenol.  After eliminating the use of pred. for about 2 episodes at

the end of that summer, Joe's fevers spaced back out to the normal 3 - 6

weeks.  This increased frequency pattern repeated itself this past summer while

we tried cimetidine (w/ no appreciable difference or improvement in his

fevers).  I'm wondering now if the seasonal increased frequency was

weather-related instead of prednisone-related!

 

Therefore, short answer to your question, we continue to be regular users of

prednisone and have not noticed PERMANENT increases in the frequency of fevers.

 

Please write if any further questions.

Kathleen

mom of Joe, almost 5 w/ , and Ben, age 3

Chattanooga, TN

kjbcunningham@...

[Guest guest]

a, We have never noticed an increase in episodes on the Prednisone,

in fact after we started using it the fevers actually spread out

farther. I know it's contrary to what people report but thats our

experience. I however do believe that most kids outgrow this so maybe

it was just my little girls time and it was a coicidence. My girl

had fevers every 14 days or so and was basically crippled for five days

(fever,stomach ache, joint pain,vomiting,huge neck lymph nodes, no

eating and weight loss.) but now shes gone months at a time between

fevers so who knows? We are praying that they go away now and leave her

little body alone but if they do return at least we have the Prednisone

and a diagnosis. When I was in the hospitals with her and one of my

twins (my twin boy basically drowned at birth and University of

Michigan saved him) I saw kids with no hope and constantly remind

myself how lucky we are(though it doesnt feel like it at times). I know

how hard it is to see your innocent baby burning up and looking at you

like please help and theres nothing you can do, so yes I am one of the

biggest advocates for the Prednisone. I dont begrudge anyone for the

T/A but we are afraid of the surgery at this time and are opting to

ride out the Prednisone tretment and see if she outgrows this. I wish

you and yours the best.

Steve, Dad to Randi 4.5 since forever and her pesky twin brothers Mikey

and Mitch

[Guest guest]

Kathleen,

Thank you so much for your response. My son is 10 and was just

diagnosed at the beginning of June. His fevers only started at the

beginning of 2007, so we haven't been at it that long. In addition,

his fevers are very low grade (100-102). I was hesitant to give him

the Prednisone, as we have no difficulty managing his fevers (not to

mention that I would prefer not to give him steroids at all).

Increasing the frequency would be a big problem for us.

Thanks again for your response.

a

[Guest guest]

Kathleen,

I am behind on my emails, we were on vacation last week.  I have noticed my sons

episodes seem to decrease certain times of the year.  We actually went from Aug.

until Dec. of 07  without any fevers at all.  This was the longest period in 

his life without a fever.  They started again the end of  Dec. and came back

with vengence.  (He is 4 and 1/2, has been suffering since about 1)  We were

getting them every week and at the time I did not realize the prednisone could

increase the episodes.  Landon was on prednisone for a year and it did not

increase his episodes at first, now we are getting a fever almost every 7-10

days.  Once in a while we will go two or three weeks.  Thinking back, it does

seem we get longer breaks certain times of the year.  We live in AZ so the

weather is always warm, boiling in the summer, but it the episodes seem to

increase with the colder weather. Thought this was interesting.

Take Care,

Jackie

[Guest guest]

Kathleen,

I am behind on my emails, we were on vacation last week.  I have noticed my sons

episodes seem to decrease certain times of the year.  We actually went from Aug.

until Dec. of 07  without any fevers at all.  This was the longest period in 

his life without a fever.  They started again the end of  Dec. and came back

with vengence.  (He is 4 and 1/2, has been suffering since about 1)  We were

getting them every week and at the time I did not realize the prednisone could

increase the episodes.  Landon was on prednisone for a year and it did not

increase his episodes at first, now we are getting a fever almost every 7-10

days.  Once in a while we will go two or three weeks.  Thinking back, it does

seem we get longer breaks certain times of the year.  We live in AZ so the

weather is always warm, boiling in the summer, but it the episodes seem to

increase with the colder weather. Thought this was interesting.

Take Care,

Jackie

[Guest guest]

Thank you so much for your reply, Steve. It's been a while since

I've looked at the posts here. Thanks also for sharing a bit of your

story. Take care.

a

[Guest guest]

Thank you so much for your reply, Steve. It's been a while since

I've looked at the posts here. Thanks also for sharing a bit of your

story. Take care.

a

[Guest guest]

I am kind of in a similar boat to you. Also on 40 h.c plus 3 NAE and

4.75 25 mcg tabs T3.

Like you I cannot keep my av. temps stable. Made a small quarter tab

increase last week and have gone into an adrenal dip as a result.

Maybe I should increase the NAE?

Pred. is hard on the liver I believe. 5 mg equals approx 20 hc. I

have in the back of my mind the idea of taking Medrol instead if I

just cannot get my adrenals well enough on my current regime.

I mentioned it to Dr P and he said, try the NAE first and we'll see

about the Medrol if it doesn't work for me.

Are you dealing with any candida issues? I have come to the

conclusion that this is one of the major drains on my adrenals and I

have had a very half-hearted approach to getting rid of it. I am

aware of having it for at least 18 years or so, most probably a lot

longer as I can recall getting thrush from the pill, many times, in

my twenties and I don't think I ever really got rid of it.

It looks like you can increase up again and see how the temps go.

Good luck!

Mo

>

> I've been off the net for a while but wanted some advice

[Guest guest]

Hi Caroline,

Have you been using ne or Malathion for flea treatment of your dog?

best wishes

Bob

> Hi all

> I've been off the net for a while but wanted some advice

> I have been on various thyroid meds with only any result on T3.

[Guest guest]

Hi Mo

I have had candida and followed Dr P's protocol to get rid of it. I do need to keep on a very low carb diet and when i'm in pain find this hard - eat for comfort.

I don't know anything about medrol what is it?

Did you mean to increas the pred or the t3. I used to take my t3 spread throughout the day but now take 100mg first thing and just started 12.5mg at bedtime to see if it helps me wake up in less pain.

Thanks

C

From: Mo Osborne <moosborne@...>Subject: Re: Prednisone questionthyroid treatment Date: Wednesday, October 8, 2008, 8:48 PM

I am kind of in a similar boat to you. Also on 40 h.c plus 3 NAE and 4.75 25 mcg tabs T3.Like you I cannot keep my av. temps stable. Made a small quarter tab increase last week and have gone into an adrenal dip as a result. Maybe I should increase the NAE?Pred. is hard on the liver I believe. 5 mg equals approx 20 hc. I have in the back of my mind the idea of taking Medrol instead if I just cannot get my adrenals well enough on my current regime.I mentioned it to Dr P and he said, try the NAE first and we'll see about the Medrol if it doesn't work for me.Are you dealing with any candida issues? I have come to the conclusion that this is one of the major drains on my adrenals and I have had a very half-hearted approach to getting rid of it. I am aware of having it for at least 18 years or so, most probably a lot longer as I can recall getting thrush from the pill, many times, in my twenties

and I don't think I ever really got rid of it.It looks like you can increase up again and see how the temps go.Good luck!Mo> > I've been off the net for a while but wanted some advice

[Guest guest]

Hi Bob

Not had to treat the dogs for fleas for over 4 years, can't remember what the last thing I used was?

C

From: bob.m9uk <Bob.m9uk@...>Subject: Re: Prednisone questionthyroid treatment Date: Wednesday, October 8, 2008, 9:13 PM

Hi Caroline,Have you been using ne or Malathion for flea treatment of your dog?best wishesBob> Hi all> I've been off the net for a while but wanted some advice> I have been on various thyroid meds with only any result on T3.