prednisone

[Guest guest]

In a message dated 2/23/2004 11:51:00 AM Eastern Standard Time,

parent616@... writes:

> Does anyone have any opinions/experiences on the use of this drug in

> autism?

Steroids of any kind make my kid *crazy. Psychotic, violent crazy. He got

them for asthma years ago and once I figured out what was going on I told the

docs: No steroids unless he's going to die otherwise.

Nell

[Guest guest]

> Does anyone have any opinions/experiences on the use of this drug in

> autism? I read about the side effects/risks and they are pretty

> gruesome. I heard it is used by Dr. Chez and he has had dramatic

> results with it. Has anyone had experience with him?

> Are there natural alternatives to prednisone that are safe for kids?

>

> Thanks,

> Hope

My son had to take it twice to combat severe asthma attacks.

Fortunately, he's now asthma-free thanks to a diet 99% free of casien.

Anyway, we were only given a 4 day supply of prednisone and his

speech improved starting day two, but he was incredibly hyper and

biligerent. I would NOT recommend it as a therapy for autism. (I'm

not a medical professional either.)

Lynn

[Guest guest]

Pat, you ask if you will sleep better as your body adjusts to Prednisone. says, below, that she still does not sleep well at 2.5 mg. I think this is variable. I started at 80 mg nearly four years ago . I am now taking 10 mg. During the first weeks of Prednisone, I wanted desperately to clean the garage in the middle of the night but was exhausted during the daytime. I no longer had any trouble sleeping once I got down to about 40 mg. I sleep very heavily now (at 10 mg), rarely waking at all unless I have to go to the bathroom. If I do wake, I can go back to sleep quickly if I wish to. Before AIH, I often was awake from 3 am until the alarm went off in the morning.

says she rapidly lost her moon face. I still have an enormous moon face, nearly four years after I began Prednisone. Before, my face was boney. The moon face is much better than it used to be. My head became so large that I had to bend my glasses frames. The alternative would have been to buy very large men's frames. My face size now allows me to wear wide but normal women's glasses. I look very different from the way I did before AIH, but I'm alive and happy. I still have odd fat pads on top of my collar bones and wrists. I didn't get the "buffalo hump" that my GP told me to expect. I have not lost the 40 pounds I gained in one month, and I added another 12 I gained when I had to increase Prednisone briefly because of shingles a few months ago. I wasn't aware of eating any more when I took more Prednisone for shingles, and I have not gained weight at any other times during the four years.

Back to shingles: shingles occurs more frequently in people whose immune systems are suppressed, as in Imuran use. Early aggressive treatment is essential to avoid long-term problems, which can be severe. Don't delay one minute if you ever think you might have shingles. And remind the doctor that you have AIH before treatment begins.

Someone wrote recently about a sore on her tongue. it could be thrush, candida albicans. Many people of us with AIH, because we usually take Imuran, develop thrush. Thrush is a fungal "yeast" infection. It is usually oral (inside cheeks, tongue, throat), but other parts of the body can be affected. The classic sign is white spots on the inside of the cheeks, but this may not occur. Thrush in the esophagus feels as if you have swallowed sharp sticks. Again, early treatment is important. Treatment will vary according to the location and severity. Be sure any doctor treating knows about AIH.

If you think you have either thrush or shingles, see a doctor immediately.

Harper

In a message dated 3/8/2004 12:39:05 PM Pacific Standard Time, writes:

Pat,do you want me to tell you the truth or should I lie? In my opinion, theanswer is no, the prednisone nights never get better! Of course, I onlystarted at 20 mg of prednisone in Jan 03. By around Aug or Sep 03, I wasdown to 2.5 mg of prednisone and that's where I'm at now. The 'prednisonenights' as I called them didn't get any better until I was down to about 5mg of prednisone daily. I was just thankful that my disability retirementfrom my job became effective in March 03, so after that I didn't have toworry as much about not being able to get to sleep at night. I could prettymuch sleep whenever my body would allow me to sleep. There were some nightsthat I accomplished more from about midnight to 4 a.m. than I hadaccomplished in the whole month prior to that 'prednisone night', so itwasn't all bad! I would say that until I got below at least 10 mg a day, Ihad at least 2-3 nights a week that I just could not sleep. It was notunusual for me to have only 3-4 hours of sleep in a 2 day or so period, thenI might sleep for 10-15 hours. When I was having a prednisone night, therewas no amount of sleeping medication that would allow me to sleep. In thebeginning, I tried taking ambien or klonopin to help me get to sleep, butwhen I soon learned to recognize when I was not going to be able to sleep soI didn't even bother wasting the medications because I knew they would do meno good. I am fortunate that our daughters were both already away atcollege prior to my AIH diagnosis, so I had no little ones to worry aboutbeing up with. I honestly don't know how some of our members with youngchildren or who still work do it at times. Although, maybe if I'd had towork, I'd have been so tired that I would have had less of the prednisonenights just from the sheer exhaustion. I don't really know. Hopefully, youwill also be one of the lucky ones who doesn't have to be on high doses ofprednisone for a terribly long time. According to my doctors, you can counton having side effects from the prednisone until you are on less than 5 mg aday. Also, once you have been on more than 5 mg a day for over two weeks,it can take your body up to a year to totally return to normal as far asproducing the right amount of natural steriods when you need it, getting ridof the 'moon' face, and so on. I will tell you that I was just beginning toshow signs of the moon face at the time they dropped my prednisone down to 5mg daily, so it was only a matter of weeks and any signs of the 'moon' facewere totally gone.

[Guest guest]

In a message dated 3/15/04 1:36:49 PM Eastern Standard Time,

mazurs05@... writes:

<<

I'm sorry, but I am too new to all this to help you out. Especially with the

prednisone issue. All I can say is good luck and your in my prayers.

Patti & Noah, 2 1 >>

Thanks Patti. Prayers are always appreciated.

Take care.

Patty

[Guest guest]

Hi Jodi:

Thank for your reassuring words. Caitlin is taking 2 - 1mg (or I should say

was) Prednisone. Glad to hear Bronson has been off MTX for 6 weeks now

without a major flare. I hope the pain is something that can be helped with a

different med.

Take care.

Patty

[Guest guest]

> Hi Everyone:

>

> Well, I called to rheumy's office and peds office. The peds wanted

her to

> come in, but I hadn't heard back from the rheumy's office so I held

them off (I

> would like one week for her to not have to go to the doctor's

office). The

> rheumy's office called and said to stop the Prednisone completely.

She has gone

> from 18mg, currently down to 2mg as of Saturday. I know you really

have to

> be slow and careful when weaning off Prednisone. I am concerned

that he wants

> her to quit the Prednisone now at 2mg instead of continuing the

tapering. I

> guess he figures this could be the problem (or at least one of

them) of her

> sadness, especially since she was euphoric at 18mg. Anyone have

any words of

> wisdom regarding stopping the steroids completely while at a 2mg

dose. I am

> hoping and praying it doesn't hurt her. She is also off the MTX as

of two Fridays

> ago too. Don't get me wrong I want her off the meds if possible,

but I am

> worried of a flare and then having to go on higher doses and she's

come so far.

> He is also calling in, I think, Folic Acid (they said it so fast)

today

> because of the hair loss. Didn't think of it helping with the hair

loss, but since

> the drug is still in her system, I guess they figure it will help

prevent

> more hair loss over the next couple of weeks until the MTX is

completely out. He

> will see her again on the 26th of March instead of waiting until

the end of

> April.

>

> Thanks all.

> Patty

Hi Patty,

First off, I am trying to figure out exactly how much is 2mg? When

Bronson took pred, he took liquid, and each tsp was 5ml, when he got

down to 1/2 a teaspoon, which would have been about 2ml, he began

taking it every other day for a week, and then he was done. I know

this information probably isn't helping you much...but...I would

think that stopping completely at 2mg would be ok, mainly, my feeling

is, if you feel confident about her doctor and you trust him, then if

he feels this is what needs to be done, then go with it. I know I

have questioned some of Bronson's doctor's decisions, but in the end,

followed his directions, and have always been reassured by the

results, and have come to realize now, that he knows what he is

doing! I completely can relate to how you are feeling about stopping

all meds, it is sooo scary to not have the " safetly net " of

medication. But luckily, you are so aware of what is going on with

your daughter, that if anything does happen, you will be right on top

of things, at least that's what I tell myself to calm my nerves with

Bronson. Sure enough though, Bronson is starting to have some

problems with pain, so I now am waiting to call his doctor tomorrow

morning, since he is out of the office today, Bronson is currently

starting his 6th week without mtx. Anyways, enough rambling, good

luck and I hope everything works out good for your daughter.

Jodi

[Guest guest]

In a message dated 3/15/04 4:49:34 PM Central Standard Time, staciar@... writes:

One thing that sticks out is that once you get below 10mg or so, the taper should slow down and drop fewer mg. at a time. I think I remember some people that drop from 2.5mg to 0. I suppose it depends on how long she's been at high doses versus low doses and all that stuff. If the rheumy says it's OK, based on what I've read here, I'd be OK with that.

Hi Patty,

I would have to agree>Caitlin hasn't been on high doses or on the steroids for all that long. was on them a long time and stoped after 1mg every other day for a month.I had to talk our rheumy out of 1/2mg every other day.Ooops, got 1 dose of 1mg every other day and I said "No way,he doesn't need them anymore".

Hugs

Becki and 5 systemic

[Guest guest]

Patty,

Hunter started with 35mg pred. last Sept., through Dec./Jan we got

it down to 10mg. We started by dropping by 5mg every two weeks and

then 2.5mg until we got to 10mg. We did 7.5mg for about two months

and last week dropped another 2.5mg. Now we're on 5mg and it will

be that for about 5 weeks. Then, we will drop 1 mg every two weeks

til we get to the magic number of 0mg.

Personally, I wouldn't worry about going from 2mg to 0mg. We've

seen posts about a month or so ago with a lot of stories and advice

about tapering. One thing that sticks out is that once you get

below 10mg or so, the taper should slow down and drop fewer mg. at a

time. I think I remember some people that drop from 2.5mg to 0. I

suppose it depends on how long she's been at high doses versus low

doses and all that stuff. If the rheumy says it's OK, based on what

I've read here, I'd be OK with that.

Stacia and Hunter,7,systemic,iritis

[Guest guest]

In a message dated 3/15/04 9:05:14 PM Eastern Standard Time,

Arthurnator@... writes:

<<

I would have to agree>Caitlin hasn't been on high doses or on the steroids

for all that long. was on them a long time and stoped after 1mg every

other

day for a month.I h >>

Hi Becki:

I am thinking this way too, but have that nagging thought along with it.

Hopefully, she'll be perfectly fine off of them:)

Take care.

Patty

[Guest guest]

Hi Patty,

I have been swamped and as usual I am way behind on the posts -but I wanted to

respond real quick to yours. Your rheumy probably has a lot of success with

tapering the pred - but I have my concerns about even a 2 mg drop. The body has

to adjust. Many of Robbie's mood swings occurred as we tapered, and were some

when the dose got real small - so that may be contributing to the problem.

However, a 2mg drop when that is all the body is getting is more significant

that a 2mg drop from 10 mg. You have to take into account that you are making a

100% drop in medication instead of a larger percentage drop. Big difference for

the body. You said she is already off the MTX? Is she taking anything else for

her JRA? With Robbie, we dropped from 2 mg to 1.5mg, (or it may have been 1.5

to 1, I don't remember and don't have my notes - but I am pretty sure we went to

1.5) which through him into a major flare, for which he was hospitalized twice,

eventually having IV steriods and upping his PO dose to 33mg. We are now back

down to 3mg - after over a year of tapering once again. He got so ill that

time, that his rheumy team are very hesitant to make any changes right now. As

much as I desperately want Robbie off the steriods for growth issues, and his

osteopenia - I do not want to repeat what he went through in Nov - Dec 2002. I

don't want to scare you, and it's possible that she would do just fine, I just

thought I would share our experience. Hang in there! (Robbie did every other

day taper when on the steriods for his MCD - but we've never gotten that far

since the JRA)

Val

Rob's Mom (6,systemic)

In a message dated 3/15/2004 1:12:23 PM Eastern Standard Time, Emeraldsx3

writes:

>

>

> Hi Everyone:

>

> Well, I called to rheumy's office and peds office. The peds wanted her to

> come in, but I hadn't heard back from the rheumy's office so I held them off

(I

> would like one week for her to not have to go to the doctor's office). The

> rheumy's office called and said to stop the Prednisone completely. She has

gone

> from 18mg, currently down to 2mg as of Saturday. I know you really have to

> be slow and careful when weaning off Prednisone. I am concerned that he wants

> her to quit the Prednisone now at 2mg instead of continuing the tapering. I

> guess he figures this could be the problem (or at least one of them) of her

> sadness, especially since she was euphoric at 18mg. Anyone have any words of

> wisdom regarding stopping the steroids completely while at a 2mg dose. I am

> hoping and praying it doesn't hurt her. She is also off the MTX as of two

Fridays

> ago too. Don't get me wrong I want her off the meds if possible, but I am

> worried of a flare and then having to go on higher doses and she's come so

far.

> He is also calling in, I think, Folic Acid (they said it so fast) today

> because of the hair loss. Didn't think of it helping with the hair loss, but

since

> the drug is still in her system, I guess they figure it will help prevent

> more hair loss over the next couple of weeks until the MTX is completely out.

He

> will see her again on the 26th of March instead of waiting

> until the end of

> April.

>

> Thanks all.

> Patty

>

>

>

>

>

[Guest guest]

We always have gone slowly as well. Our rheumy wanted us to drop by 2.5 mg every three days once she got to 7.5. To put this in perspective, she started at 20 and got down to 7.5 in about three weeks. Anyway, every drop has been difficult this time, so I am trying to drop by .5mg once a week. We are currently at 6.5mg. This is n's third time on steroids. The first time took us 13 months to get off, and the second time was nine months. This time has been more difficult to drop each time, though this flare was the worst. The rash is back at 6.5mg, but n is over doing it. She joined track and the school is working with us in her training. All she does is high jump, and yesterday she made varsity as a freshmen. Pretty good for an arthritis kid. We are very proud of her. (n, 15, systemic)

Re: Prednisone

Hi Patty,I have been swamped and as usual I am way behind on the posts -but I wanted to respond real quick to yours. Your rheumy probably has a lot of success with tapering the pred - but I have my concerns about even a 2 mg drop. The body has to adjust. Many of Robbie's mood swings occurred as we tapered, and were some when the dose got real small - so that may be contributing to the problem. However, a 2mg drop when that is all the body is getting is more significant that a 2mg drop from 10 mg. You have to take into account that you are making a 100% drop in medication instead of a larger percentage drop. Big difference for the body. You said she is already off the MTX? Is she taking anything else for her JRA? With Robbie, we dropped from 2 mg to 1.5mg, (or it may have been 1.5 to 1, I don't remember and don't have my notes - but I am pretty sure we went to 1.5) which through him into a major flare, for which he was hospitalized twice, eventually having IV steriods and upping his PO dose to 33mg. We are now back down to 3mg - after over a year of tapering once again. He got so ill that time, that his rheumy team are very hesitant to make any changes right now. As much as I desperately want Robbie off the steriods for growth issues, and his osteopenia - I do not want to repeat what he went through in Nov - Dec 2002. I don't want to scare you, and it's possible that she would do just fine, I just thought I would share our experience. Hang in there! (Robbie did every other day taper when on the steriods for his MCD - but we've never gotten that far since the JRA)ValRob's Mom (6,systemic)In a message dated 3/15/2004 1:12:23 PM Eastern Standard Time, Emeraldsx3 writes:> > > Hi Everyone:> > Well, I called to rheumy's office and peds office. The peds wanted her to > come in, but I hadn't heard back from the rheumy's office so I held them off (I > would like one week for her to not have to go to the doctor's office). The > rheumy's office called and said to stop the Prednisone completely. She has gone > from 18mg, currently down to 2mg as of Saturday. I know you really have to > be slow and careful when weaning off Prednisone. I am concerned that he wants > her to quit the Prednisone now at 2mg instead of continuing the tapering. I > guess he figures this could be the problem (or at least one of them) of her > sadness, especially since she was euphoric at 18mg. Anyone have any words of > wisdom regarding stopping the steroids completely while at a 2mg dose. I am > hoping and praying it doesn't hurt her. She is also off the MTX as of two Fridays > ago too. Don't get me wrong I want her off the meds if possible, but I am > worried of a flare and then having to go on higher doses and she's come so far. > He is also calling in, I think, Folic Acid (they said it so fast) today > because of the hair loss. Didn't think of it helping with the hair loss, but since > the drug is still in her system, I guess they figure it will help prevent > more hair loss over the next couple of weeks until the MTX is completely out. He > will see her again on the 26th of March instead of waiting > until the end of > April.> > Thanks all.> Patty> > > > >

[Guest guest]

Hi - Ooops that last post was rampant with typos & wrong words - sorry - I meant

to say that 2mg would be a smaller percentage of 10 mg than of course doing a

100% drop. Please excuse the others too. Better get back to work - this one is

sounding much clearer than the last! I hope all are having a good day.

Val

[Guest guest]

In a message dated 3/16/04 11:11:14 AM Eastern Standard Time,

carneyval@... writes:

<< Many of Robbie's mood swings occurred as we tapered, and were some when

the dose got real small - so that may be contributing to the problem. However,

a 2mg drop when that is all the body is getting is more significant that a

2mg drop from 10 mg. You have to take into account that you are making a 100%

drop in medication instead of a larger percentage drop. Big difference for the

body. You said she is already off the MTX? Is she taking anything else for

her JRA? With Robbie, we dropped from 2 mg to 1.5mg, (or it may have been 1.5

to 1, I don't remember a >>

Hi Val:

It's interesting to hear that a child has had a mood swing at a low dose.

This gives me hope that this could be the culprit in Caitlin's sadness. When my

husband mixed up on doses the last time (gave her to little of the Pred.),

she had a horrible rash that night. I am waiting for this night to be done so I

can see what happens since this is the first day with no Pred. on board.

Yes, she went off the MTX two Fridays ago (due to hair loss and possible

headaches and tummy ache). No, he hasn't called in anything to replace it. At

last

check, he wanted to have her off Prednisone by end of March and off MTX by her

birthday (May 14). So things are moving a little faster. If it is, in fact,

reactive arthritis, the worst may be behind her and she may not need the

arthritic meds. Time will tell. Of course, we all know, the waiting stinks.

Take care.

Patty

[Guest guest]

In a message dated 3/16/04 11:21:20 AM Eastern Standard Time,

bc.price@... writes:

<< This time has been more difficult to drop each time, though this flare

was the worst. >>

Hi :

Was this flare worse than initial onset?

Thanks.

Patty

[Guest guest]

- Varsity? Holy Cow! Awesome! Congrats n!!! I hope that

the taper goes better. I dred the day we have to start tapering

Caroline.

Alia and Caroline, age 2, pauci and uveitis

> We always have gone slowly as well. Our rheumy wanted us to drop

by 2.5 mg every three days once she got to 7.5. To put this in

perspective, she started at 20 and got down to 7.5 in about three

weeks. Anyway, every drop has been difficult this time, so I am

trying to drop by .5mg once a week. We are currently at 6.5mg.

This is n's third time on steroids. The first time took us 13

months to get off, and the second time was nine months. This time

has been more difficult to drop each time, though this flare was the

worst. The rash is back at 6.5mg, but n is over doing it.

She joined track and the school is working with us in her training.

All she does is high jump, and yesterday she made varsity as a

freshmen. Pretty good for an arthritis kid. We are very proud of

her. (n, 15, systemic)

> Re: Prednisone

>

>

> Hi Patty,

> I have been swamped and as usual I am way behind on the posts -

but I wanted to respond real quick to yours. Your rheumy probably

has a lot of success with tapering the pred - but I have my concerns

about even a 2 mg drop. The body has to adjust. Many of Robbie's

mood swings occurred as we tapered, and were some when the dose got

real small - so that may be contributing to the problem. However, a

2mg drop when that is all the body is getting is more significant

that a 2mg drop from 10 mg. You have to take into account that you

are making a 100% drop in medication instead of a larger percentage

drop. Big difference for the body. You said she is already off the

MTX? Is she taking anything else for her JRA? With Robbie, we

dropped from 2 mg to 1.5mg, (or it may have been 1.5 to 1, I don't

remember and don't have my notes - but I am pretty sure we went to

1.5) which through him into a major flare, for which he was

hospitalized twice, eventually having IV steriods and upping his PO

dose to 33mg. We are now back down to 3mg - after over a year of

tapering once again. He got so ill that time, that his rheumy team

are very hesitant to make any changes right now. As much as I

desperately want Robbie off the steriods for growth issues, and his

osteopenia - I do not want to repeat what he went through in Nov -

Dec 2002. I don't want to scare you, and it's possible that she

would do just fine, I just thought I would share our experience.

Hang in there! (Robbie did every other day taper when on the

steriods for his MCD - but we've never gotten that far since the JRA)

> Val

> Rob's Mom (6,systemic)

>

> In a message dated 3/15/2004 1:12:23 PM Eastern Standard Time,

Emeraldsx3 writes:

>

> >

> >

> > Hi Everyone:

> >

> > Well, I called to rheumy's office and peds office. The peds

wanted her to

> > come in, but I hadn't heard back from the rheumy's office so I

held them off (I

> > would like one week for her to not have to go to the doctor's

office). The

> > rheumy's office called and said to stop the Prednisone

completely. She has gone

> > from 18mg, currently down to 2mg as of Saturday. I know you

really have to

> > be slow and careful when weaning off Prednisone. I am

concerned that he wants

> > her to quit the Prednisone now at 2mg instead of continuing

the tapering. I

> > guess he figures this could be the problem (or at least one of

them) of her

> > sadness, especially since she was euphoric at 18mg. Anyone

have any words of

> > wisdom regarding stopping the steroids completely while at a

2mg dose. I am

> > hoping and praying it doesn't hurt her. She is also off the

MTX as of two Fridays

> > ago too. Don't get me wrong I want her off the meds if

possible, but I am

> > worried of a flare and then having to go on higher doses and

she's come so far.

> > He is also calling in, I think, Folic Acid (they said it so

fast) today

> > because of the hair loss. Didn't think of it helping with the

hair loss, but since

> > the drug is still in her system, I guess they figure it will

help prevent

> > more hair loss over the next couple of weeks until the MTX is

completely out. He

> > will see her again on the 26th of March instead of waiting

> > until the end of

> > April.

> >

> > Thanks all.

> > Patty

> >

> >

> >

> >

> >

[Guest guest]

The initial onset included fevers, but she has never gotten fevers since. This flare has lasted longer which has meant more missed days of school. As they get older I find the flares harder to juggle. The kids are in more things by teenage years. Missing calculus and physics is not as easy as missing fifth grade stuff. Also, the sports are kind of hard core and not easy to miss at this stage.

Re: Prednisone

In a message dated 3/16/04 11:21:20 AM Eastern Standard Time, bc.price@... writes:<< This time has been more difficult to drop each time, though this flare was the worst. >>Hi :Was this flare worse than initial onset?Thanks.Patty

[Guest guest]

Hi Alia,

Yep, 1 missed dose can cause all kinds of trouble. always had a hard time getting off his PM dose for this exact reason.Well, being systemic he would wake up with the fever or be in an awful state later on in the evening if we missed one or gave it to late.

Just promise not to beat yourself up over this.We have all skiped a dose of something or just forgotten.

I hope Caroline is feeling better now.

Hugs

Becki and 5 systemic

[Guest guest]

In a message dated 3/22/04 11:29:26 AM Eastern Standard Time,

ajpranke@... writes:

<< I felt soo

bad. My question is - Does one dose really make that much of a

difference? She's on 30mg a day so she only got 15mg on Saturday.

>>

Hi Alia:

Once, when we were tapering Caitlin off the Prednisone, my husband got

confused and gave her a smaller dose that morning and by that afternoon she had

a

welt like rash all over her thighs and legs, very angry looking. I even paged

the rheumy that day because I thought 'oh oh here it is a flare' (was a weekend

day). Then I looked over the journal and realized what had happened. So

yeppers, one dose, unfortunately, can make a difference.

I am sure she'll be back on track in no time though.

Take care.

Patty

[Guest guest]

Hi Alia,

Glad to hear Caroline is feeling better even if she is cranky.s mad and just trashed his room.Not allowed to come out until it's picked up.We may never see him again,lol.

Hugs

Becki and 5 systemic

[Guest guest]

Hi Alia,

Like you, I learned this lesson the hard way - since I have quite a commute in

the mornings, Robbie's day starts pretty early, so he was used to getting his

morning dose around 6:15. It wasn't long after his last admission, so his pred

dose was pretty high, 33 mg a day, split into two doses. Anyway, it was a

weekend, and I let him sleep in - and he woke up and it was so late in the

morning that I made an early lunch and gave him his meds - it was already too

late, 4 hours later than he normally received his meds, and he had a fever of

105, and had pain and rash all over. I think it makes a bigger difference, the

bigger the dose. I still make sure he gets his dose pretty early in the morning

on " off " days, but now that he is only taking 3 mg a day, it seems to make less

of a difference now. Don't beat yourself up - things happen - and the sleep

issue for Robbie was awful for the longest time that I totally understand the

position you were in. That last flare, during a visit to the rheumy when " the

team " started discussing raising the steriods back up - I told them that sleep

issues were a big concern. They looked at me as if I was complaining about the

inconvenience. Then I explained how sleep deprived Robbie and I both were the

previous year when the dose was high - I am a divorced parent, and there were

times that I felt like I was going to have an accident driving to work because I

couldn't keep my eyes open. Robbie had awful sleepless nights where he was

bouncing off the walls. We gave his evening dose very early in the evening the

second time around, and we both did much better with it. Hang in there Alia, I

hope that things get easier for you guys soon!

Val

Rob's Mom (6,systemic)

In a message dated 3/22/2004 11:28:04 AM Eastern Standard Time,

ajpranke@... writes:

>

>

> Hey all. Here's my prednisone story of the weekend. Saturday we were

> at my nephew's 1 year party and we didn't get home until late

> (5:00pm). Because of the sleeping issues we have been having with

> Caroline, we decided to " skip " her evening dose. Nothing could really

> happen right? WRONG! Sunday morning she woke up crying about her knee

> and said she couldn't walk. Getting her dressed for Church was a

> battle and the whole morning she was so stiff and limping. I felt soo

> bad. My question is - Does one dose really make that much of a

> difference? She's on 30mg a day so she only got 15mg on

> Saturday.

>

> Anyone have any experience with this?

>

> Alia and Caroline, age 2, pauci and uveitis

>

>

>

>

>

[Guest guest]

Thanks Becki. I just had no idea.... She is feeling better today.

Just being a usual cranky 2 year old!

Alia and Caroline, age 2, pauci and uveitis

> Hi Alia,

> Yep, 1 missed dose can cause all kinds of trouble. always had

a hard

> time getting off his PM dose for this exact reason.Well, being

systemic he would

> wake up with the fever or be in an awful state later on in the

evening if we

> missed one or gave it to late.

> Just promise not to beat yourself up over this.We have all skiped a

dose of

> something or just forgotten.

> I hope Caroline is feeling better now.

> Hugs

> Becki and 5 systemic

[Guest guest]

Thanks Patty.. Good to know. It is a little disconcerning considering

we want to taper. I wonder... We meet with the Rhuemy on Wednesday so

we'll see...

Alia and Caroline, age 2 ,pauci and uveitis

> In a message dated 3/22/04 11:29:26 AM Eastern Standard Time,

> ajpranke@j... writes:

>

> << I felt soo

> bad. My question is - Does one dose really make that much of a

> difference? She's on 30mg a day so she only got 15mg on Saturday.

> >>

> Hi Alia:

>

> Once, when we were tapering Caitlin off the Prednisone, my husband

got

> confused and gave her a smaller dose that morning and by that

afternoon she had a

> welt like rash all over her thighs and legs, very angry looking. I

even paged

> the rheumy that day because I thought 'oh oh here it is a flare'

(was a weekend

> day). Then I looked over the journal and realized what had

happened. So

> yeppers, one dose, unfortunately, can make a difference.

>

> I am sure she'll be back on track in no time though.

>

> Take care.

> Patty

[Guest guest]

Hi Helen,

I would swear is on high doses of pred.He is so mouthy one minuite and sooo sweet the next.He will also just start crying over the smallest of things.I thnk it's all the attention since I got recruited for our arthritis walk.He goes to the meetings(attention).He went to the team captain luncheon,pictures and attention galore,we had photagraphers from the paper come,he claims "he is a star".Sat the article and picture came out(full paige).Even though he is just a kindergartener he has been at Nothfield Elementary since 3 so anyone that knows him and seen the article said something to him today.One little kid said it wasn't fair that he was in the paper and replied it wasn't fair that he has to take shots.Oh how they get wise beyond their years.I swear when we go to Cincy I am just going to leave him there.On a serious note I think he is just acting out and has something to prove.Once the walk is over he will calm down,I hope.His knees are getting hard and calloused from slideing on the floor like Tom Cruise and Travolta.He is going to be the death of me yet.

I read that Nick did fine after missing his 1/2mg pred.If all goes well I agree it's time to try and discontinue it.Our rheumies always hated PM doses and the sooner you can get rid of it the better.

Wish luck.He had his last dose of Benadryl last Thursday(Enbrel) and tonight was another shot of Enbrel.We shall see if the morning proves to be hive free.It's been close to an hour and he still alive,so I don't think anaphalactic shock is a concern.It still scares me thinking about Nick and his allergic reaction to the Penicillin.Sorry to have gotten so long and rambly.

Love and Hugs

Becki and 5 systemic(even sweeter while asleep)

[Guest guest]

-becki...

Your sounds soo much like .. dont ya just love when

they get cranky!! NOT!!!!

Hugs Helen and (6,systemic)

-- In , Emeraldsx3@a... wrote:

> In a message dated 3/22/04 4:23:57 PM Eastern Standard Time,

> Arthurnator@w... writes:

>

> << .Not allowed to come out until it's picked up.We may

> never see him again,lol.

> Hugs

> Becki and 5 systemic

> >>

> LOL Becki:)

[Guest guest]

Becki-

It sounds like a great article, and one which will raise awareness, even if they didn't get all the details right. And the "running free from pain" is the part we love to here!

Diane (, 4, pauci)