Re: Steriod Dosage (Hunter)

[Guest guest]

-Sandi.

Nick is 49 lbs ( he did briefly hit 50lb but has dropped again) and

has been on 25mg (1.0cc) of MTX for over a year now. He has no

problems with it.

When he flares the temp rheumy puts him on a boost of 40mg a day of

steriods for 5 days. Then we go back to our regular dose. We have

done this once and it worked well. I have extra prednisone on hand

with instructions to do this again if Nick ever flares.

Hope this helps, its hard when you cant talk to the reg doctors. I

hope you get some answers soon.

hugs Helen and (8,systemic)

-- In , deerhuntert6@... wrote:

>

> Hunter went on the orapred 13 days ago - the taper went fine until

last

> night. Hunter began have chest pains(could have been muscle

strain - she swam a

> lot yesterday) and ankles began to swell. Called Rheumy - he is

on vacation

> this whole week. Call regular ped doc - he is on vacation all

this week. We

> saw another ped doc who is aware of Hunter's illness from onset.

He wanted

> to put her on 30 mg of orapred until her regular Rheumy gets

back (8 days

> from now) - Hunter has never been on that dosage - highest was 15

mgs aday. I

> gave her 6 mgs today because she was not flaring at that dosage

(ankles were

> alittle swollen at 3 mg yesterday). What do you all think - The

doctor

> listened to her heart and said it sounded just fine. We go to 1

ml of MTX this

> week (usually .9 ML) Any other little ones - age 7 and 60 pounds

at that

> dosage of MTX. I am greatful that we have the medications to

treatment this but

> I really feel that the doctor today was going over board. I don't

want to

> over medicate or under medicate. Sandi Ken Hunter (7 Systemic)

>

>

>

[Guest guest]

-Sandi,

I forgot to add, that I think short higher doses of steriods help a

great deal. As long as you dont stay on the higher doses for too

long you are fine.

Hugs Helen and (8,systemic)

-- In , deerhuntert6@... wrote:

>

> Hunter went on the orapred 13 days ago - the taper went fine until

last

> night. Hunter began have chest pains(could have been muscle

strain - she swam a

> lot yesterday) and ankles began to swell. Called Rheumy - he is

on vacation

> this whole week. Call regular ped doc - he is on vacation all

this week. We

> saw another ped doc who is aware of Hunter's illness from onset.

He wanted

> to put her on 30 mg of orapred until her regular Rheumy gets

back (8 days

> from now) - Hunter has never been on that dosage - highest was 15

mgs aday. I

> gave her 6 mgs today because she was not flaring at that dosage

(ankles were

> alittle swollen at 3 mg yesterday). What do you all think - The

doctor

> listened to her heart and said it sounded just fine. We go to 1

ml of MTX this

> week (usually .9 ML) Any other little ones - age 7 and 60 pounds

at that

> dosage of MTX. I am greatful that we have the medications to

treatment this but

> I really feel that the doctor today was going over board. I don't

want to

> over medicate or under medicate. Sandi Ken Hunter (7 Systemic)

>

>

>

[Guest guest]

Sandi,

Just letting you know I'm thinking of you-don't have any experience

to offer, but hoping Hunter is feeling better tomorrow.

Tracey & Madi (16mo systemic)

>

> Hunter went on the orapred 13 days ago - the taper went fine until

last

> night. Hunter began have chest pains(could have been muscle

strain - she swam a

> lot yesterday) and ankles began to swell. Called Rheumy - he is

on vacation

> this whole week. Call regular ped doc - he is on vacation all

this week. We

> saw another ped doc who is aware of Hunter's illness from onset.

He wanted

> to put her on 30 mg of orapred until her regular Rheumy gets back

(8 days

> from now) - Hunter has never been on that dosage - highest was 15

mgs aday. I

> gave her 6 mgs today because she was not flaring at that dosage

(ankles were

> alittle swollen at 3 mg yesterday). What do you all think - The

doctor

> listened to her heart and said it sounded just fine. We go to 1 ml

of MTX this

> week (usually .9 ML) Any other little ones - age 7 and 60 pounds

at that

> dosage of MTX. I am greatful that we have the medications to

treatment this but

> I really feel that the doctor today was going over board. I don't

want to

> over medicate or under medicate. Sandi Ken Hunter (7 Systemic)

>

>

>

[Guest guest]

Sandi:

We have not used the MTX...yet. However, Hannah has been on orapred for her

asthma more times than I can count. She has been on as high as 60mg daily,

tapering from there. Her usual dose during an asthma flare is 40mg daily for 5

days and then a slow taper over a couple of weeks. She is 9 and weighs 60

pounds. The only thing here I don't know is how they dose the pred for JRA.

Our only experience has been for the asthma, but I believe its the same med.

Hope this helps a little. I will tell you, it has been our experience with

Hannah that at the higher dose she gets really chatty for the first 2 days and

does sometimes have trouble falling asleep.

deerhuntert6@... wrote:

Hunter went on the orapred 13 days ago - the taper went fine until

last

night. Hunter began have chest pains(could have been muscle strain - she swam a

lot yesterday) and ankles began to swell. Called Rheumy - he is on vacation

this whole week. Call regular ped doc - he is on vacation all this week. We

saw another ped doc who is aware of Hunter's illness from onset. He wanted

to put her on 30 mg of orapred until her regular Rheumy gets back (8 days

from now) - Hunter has never been on that dosage - highest was 15 mgs aday. I

gave her 6 mgs today because she was not flaring at that dosage (ankles were

alittle swollen at 3 mg yesterday). What do you all think - The doctor

listened to her heart and said it sounded just fine. We go to 1 ml of MTX this

week (usually .9 ML) Any other little ones - age 7 and 60 pounds at that

dosage of MTX. I am greatful that we have the medications to treatment this but

I really feel that the doctor today was going over board. I don't want to

over medicate or under medicate. Sandi Ken Hunter (7 Systemic)

[Guest guest]

Hi Sandi,

I'll chime in here with Helen. has been on 25mg of MTX for over a year

with no problems. He is 8 years old and weighs under 50 lbs.

has been on doses of the prednisolone up to 40 mg at a much younger age

and weight. I think that doing the 5 day boost may be very beneficial, and keep

a more severe flare from coming on. Then go back to the lower dose you are more

comfortable with until your rheumy gets back. Giving the higher dose for 8 days

or more will put you in a position where you will have to do a longer taper

routine. has been on a daily dose in excess of 60 mg in the past (not

something I will allow in the future unless we are getting nowhere with any

other treatment.) I would insist on IV pulses before letting them prescribe

that high a po dose again. A one time IV pulse could be as effective as the 5

day boost dose.

I seem to remember someone on the list here doing an every other day boost

scheduled - high dose one day, low dose the next, in fact some have gone to an

every other day schedule at some point in the taper and continued with that to

minimize side affects. We have never used this type of schedule, but maybe

someone who has can give you more information.

With all of this said, I have to add that I have only once made a change in

's pred that didn't follow the doc's recommendation to the T. How

frustrating that the two docs most involved in Hunter's care are both away. The

time I made changes was when the flare was beginning, the Doc raissed the pred

some, and he was to see the doc after the weekend (with the knowledge I call

always have him paged if needed) - but it was the last game of the season, an

all wanted was to be able to play the game, and trick or treat (same day)

- so I raised the pred higher for a few days - but not as high as he had taken

in the past, so I felt safe doing it) - and then " fessed up " when we saw the doc

that monday - he said he would have done the same thing - I didn't raise enough

to offset the flare, in fact it was after the doc saw the labs that we went to

the 60+ dose, which nearly freaked me out. was so grateful to have been

able to play his last fall season baseball game that day & he trick our treated

with the help of a wagon & I had to carry him in the house after and up to bed,

but he thanked me for letting him play, telling me " it was worth it " . I had

misgivings at first, but I realized that he was flaring, and his playing the

game had no effect one way or the other on the flare - and it made him happy.

I hope Hunter feels better soon. Good luck in making your decision. In the

past I would have followed the doc's orders completely - but with my experience

with ,i if none of his regular docs were available, I would feel

comfortable trying the 5 day boost, to minimize the time at the higher dose.

Val

Rob's Mom (8,systemic)

Re: Steriod Dosage (Hunter)

-Sandi.

Nick is 49 lbs ( he did briefly hit 50lb but has dropped again) and

has been on 25mg (1.0cc) of MTX for over a year now. He has no

problems with it.

When he flares the temp rheumy puts him on a boost of 40mg a day of

steriods for 5 days. Then we go back to our regular dose. We have

done this once and it worked well. I have extra prednisone on hand

with instructions to do this again if Nick ever flares.

Hope this helps, its hard when you cant talk to the reg doctors. I

hope you get some answers soon.

hugs Helen and (8,systemic)

-- In , deerhuntert6@... wrote:

>

> Hunter went on the orapred 13 days ago - the taper went fine until

last

> night. Hunter began have chest pains(could have been muscle

strain - she swam a

> lot yesterday) and ankles began to swell. Called Rheumy - he is

on vacation

> this whole week. Call regular ped doc - he is on vacation all

this week. We

> saw another ped doc who is aware of Hunter's illness from onset.

He wanted

> to put her on 30 mg of orapred until her regular Rheumy gets

back (8 days

> from now) - Hunter has never been on that dosage - highest was 15

mgs aday. I

> gave her 6 mgs today because she was not flaring at that dosage

(ankles were

> alittle swollen at 3 mg yesterday). What do you all think - The

doctor

> listened to her heart and said it sounded just fine. We go to 1

ml of MTX this

> week (usually .9 ML) Any other little ones - age 7 and 60 pounds

at that

> dosage of MTX. I am greatful that we have the medications to

treatment this but

> I really feel that the doctor today was going over board. I don't

want to

> over medicate or under medicate. Sandi Ken Hunter (7 Systemic)

>

>

>