s appointment

[Guest guest]

Hi its Becki,

what a week weve had.s sister getting sick and bringing up memories

of how this all started. seen the rheumy yesterday and it wasnt

with the female who is very gentle with the steroids.We seen top

dog,thats what I call him.Anyway when had labs last month 10 days

after his flair they came back being his best ones yet,sed down to 20

and wbc down to 17,his rheumy probably thinks I am crazy and it never

happened. had no active arthritis anywhere,and I was told that due

to the pred has got enough fat on his joints that it looks like

swelling so when he swells up just a little it looks awfull.I have to go

by how feals,which has been great considering he has

arthritis(does that make sence).I dont know how I am going to do this

but I am supposed to drop 1mg a week until he is in pain,shouldnt

take long considering hes at 10mg and 9mg is when he has problems.Its so

confusing when you see one rheumy for a couple of months who is

concerned with swelling and doesnt want in pain,telling me to take

things slow and that I know him better then anyone and how hes

doing,then the top dog comes along again and tells me is fealing

way to good that we have to drop quickly,hes on to much steroids.I know

that top dog is right,the steroids are for controlling the fevers and

organs,not the arthritis so much,thats why kids with poly are only put

on it for short periods or not at all,they are that bad for you.It

breaks my heart having to bring to the point of crawling on the

floor again. is usually all or nothing,his rheumy likes for him to

be just above a flair but for there is no such thing,hes either

good or flairing.I was so worried about catching his sisters virus

and the high fever bringing on a flair,now I have a possible bigger

problem.When I droped off this morning I was told there is an

epidemic of hand foot and mouth disease.s little friend Ashly also

systemic caught it last week and her mom thought she was flairing,didnt

know she was sick.When they went in to Vandy Monday,top dog was

terrified and thought she had leukemia,they drew 4 vials of blood,and

when they did the labs she got blood spots all over her arms.She was

there for 4hrs before labs came back which were awful,but they found out

what it was.So I faxed him this morning to let him know they are in the

same class,and I called his ped to let him know.Found out its more then

just s class its running rampant everywhere.I wish now I had walked

right back in there and grabed him and brought him back home. will

have a good memorial weekend I will drop him next week and who knows

mayby he will do better this time,hes been on 25mg MTX for a month now

so mayby that increase is working real good ,and mayby the Plaquenil

will start working soon.My niece has lupas and she told me forget the

books could respond as early as 3-4 weeks even though labs wont

show it yet.That is what I am hoping for,a quick responce not 3-6

months.I have rambled enough,hope you all are well.Hugs

Becki and 3systemic

[Guest guest]

-Hi Becki,

I was wondering if you knew why na would be on steroids this

long? Do you think she has been on them too long? She was put on

them at 12 months old and he has tappered it down only once and that

was just here recently at her last visit. He took it down from 3ml

to 2 ml. She weighs 28 lbs but you can see that she don't have much

fat but you can see her swelling around her joints plainly. She has

poly only and she couldn't look up until he started the prednisone

and I don't really know why she is on them; I thought it was for her

stiffness and swelling. Anything you know about it would be a big

help. Thanks and I hope gets well soon. I'll be praying for

him. I can't stand the thought of them having to crawl and can't

walk. It breaks my heart:( Jona mom of na 2 poly

- In @y..., Allan Larson <alarson1@b...> wrote:

> Hi its Becki,

> what a week weve had.s sister getting sick and bringing up

memories

> of how this all started. seen the rheumy yesterday and it

wasnt

> with the female who is very gentle with the steroids.We seen top

> dog,thats what I call him.Anyway when had labs last month 10

days

> after his flair they came back being his best ones yet,sed down to

20

> and wbc down to 17,his rheumy probably thinks I am crazy and it

never

> happened. had no active arthritis anywhere,and I was told

that due

> to the pred has got enough fat on his joints that it looks

like

> swelling so when he swells up just a little it looks awfull.I have

to go

> by how feals,which has been great considering he has

> arthritis(does that make sence).I dont know how I am going to do

this

> but I am supposed to drop 1mg a week until he is in

pain,shouldnt

> take long considering hes at 10mg and 9mg is when he has

problems.Its so

> confusing when you see one rheumy for a couple of months who is

> concerned with swelling and doesnt want in pain,telling me

to take

> things slow and that I know him better then anyone and how hes

> doing,then the top dog comes along again and tells me is

fealing

> way to good that we have to drop quickly,hes on to much steroids.I

know

> that top dog is right,the steroids are for controlling the fevers

and

> organs,not the arthritis so much,thats why kids with poly are only

put

> on it for short periods or not at all,they are that bad for you.It

> breaks my heart having to bring to the point of crawling on

the

> floor again. is usually all or nothing,his rheumy likes for

him to

> be just above a flair but for there is no such thing,hes

either

> good or flairing.I was so worried about catching his sisters

virus

> and the high fever bringing on a flair,now I have a possible bigger

> problem.When I droped off this morning I was told there is an

> epidemic of hand foot and mouth disease.s little friend Ashly

also

> systemic caught it last week and her mom thought she was

flairing,didnt

> know she was sick.When they went in to Vandy Monday,top dog was

> terrified and thought she had leukemia,they drew 4 vials of

blood,and

> when they did the labs she got blood spots all over her arms.She

was

> there for 4hrs before labs came back which were awful,but they

found out

> what it was.So I faxed him this morning to let him know they are

in the

> same class,and I called his ped to let him know.Found out its more

then

> just s class its running rampant everywhere.I wish now I had

walked

> right back in there and grabed him and brought him back home.

will

> have a good memorial weekend I will drop him next week and who

knows

> mayby he will do better this time,hes been on 25mg MTX for a month

now

> so mayby that increase is working real good ,and mayby the

Plaquenil

> will start working soon.My niece has lupas and she told me forget

the

> books could respond as early as 3-4 weeks even though labs

wont

> show it yet.That is what I am hoping for,a quick responce not 3-6

> months.I have rambled enough,hope you all are well.Hugs

> Becki and 3systemic

[Guest guest]

It sounds like nas arthritis is severe enough to warant it.3ml is only

9mg and 2ml is 6mg so those arent really high doses. started at 30mg and

has tapered up and down more times than I can count.If nas not on

calcium consider it,and she needs to have her eyes checked.I think you might

of misunderstood my post.Steroids are a highly powerful antinflammitory that

work wonders for joint inflamation but for systemic symptoms it takes more,so

if your childs systemic and no systemic symptoms are present then you have to

drop the steroids to the point that the arthritis is more bothersome but not

so much the systemic symptoms come back.In s case he doesnt need to be

running around like a wild child on 10mg steroids with no active

arthritis,and no fevers,we need to lower until starts to have pain

again.He may only make it to 9mg but he may make it to 8 or 7.Then we wait to

see if his body will adjust to those levels and if the arthritis gets

better,you drop again,you continue to do this until the fevers come back,if

that happens you go back up, gain control and start all over again,until you

are able to get off the steroids.I hope I havent confused you,mayby someone

else with poly can explain better.My knowledge is in systemic JRA and how

your supposed to use the lowest dose to keep the systemic symptoms away.The

only problem is when the arthritis gets bad the fevers are usually right

behind.

Becki and 3systemic

lovelyjayc wrote:

> -Hi Becki,

>

> I was wondering if you knew why na would be on steroids this

> long? Do you think she has been on them too long? She was put on

> them at 12 months old and he has tappered it down only once and that

> was just here recently at her last visit. He took it down from 3ml

> to 2 ml. She weighs 28 lbs but you can see that she don't have much

> fat but you can see her swelling around her joints plainly. She has

> poly only and she couldn't look up until he started the prednisone

> and I don't really know why she is on them; I thought it was for her

> stiffness and swelling. Anything you know about it would be a big

> help. Thanks and I hope gets well soon. I'll be praying for

> him. I can't stand the thought of them having to crawl and can't

> walk. It breaks my heart:( Jona mom of na 2 poly

>

> - In @y..., Allan Larson <alarson1@b...> wrote:

> > Hi its Becki,

> > what a week weve had.s sister getting sick and bringing up

> memories

> > of how this all started. seen the rheumy yesterday and it

> wasnt

> > with the female who is very gentle with the steroids.We seen top

> > dog,thats what I call him.Anyway when had labs last month 10

> days

> > after his flair they came back being his best ones yet,sed down to

> 20

> > and wbc down to 17,his rheumy probably thinks I am crazy and it

> never

> > happened. had no active arthritis anywhere,and I was told

> that due

> > to the pred has got enough fat on his joints that it looks

> like

> > swelling so when he swells up just a little it looks awfull.I have

> to go

> > by how feals,which has been great considering he has

> > arthritis(does that make sence).I dont know how I am going to do

> this

> > but I am supposed to drop 1mg a week until he is in

> pain,shouldnt

> > take long considering hes at 10mg and 9mg is when he has

> problems.Its so

> > confusing when you see one rheumy for a couple of months who is

> > concerned with swelling and doesnt want in pain,telling me

> to take

> > things slow and that I know him better then anyone and how hes

> > doing,then the top dog comes along again and tells me is

> fealing

> > way to good that we have to drop quickly,hes on to much steroids.I

> know

> > that top dog is right,the steroids are for controlling the fevers

> and

> > organs,not the arthritis so much,thats why kids with poly are only

> put

> > on it for short periods or not at all,they are that bad for you.It

> > breaks my heart having to bring to the point of crawling on

> the

> > floor again. is usually all or nothing,his rheumy likes for

> him to

> > be just above a flair but for there is no such thing,hes

> either

> > good or flairing.I was so worried about catching his sisters

> virus

> > and the high fever bringing on a flair,now I have a possible bigger

> > problem.When I droped off this morning I was told there is an

> > epidemic of hand foot and mouth disease.s little friend Ashly

> also

> > systemic caught it last week and her mom thought she was

> flairing,didnt

> > know she was sick.When they went in to Vandy Monday,top dog was

> > terrified and thought she had leukemia,they drew 4 vials of

> blood,and

> > when they did the labs she got blood spots all over her arms.She

> was

> > there for 4hrs before labs came back which were awful,but they

> found out

> > what it was.So I faxed him this morning to let him know they are

> in the

> > same class,and I called his ped to let him know.Found out its more

> then

> > just s class its running rampant everywhere.I wish now I had

> walked

> > right back in there and grabed him and brought him back home.

> will

> > have a good memorial weekend I will drop him next week and who

> knows

> > mayby he will do better this time,hes been on 25mg MTX for a month

> now

> > so mayby that increase is working real good ,and mayby the

> Plaquenil

> > will start working soon.My niece has lupas and she told me forget

> the

> > books could respond as early as 3-4 weeks even though labs

> wont

> > show it yet.That is what I am hoping for,a quick responce not 3-6

> > months.I have rambled enough,hope you all are well.Hugs

> > Becki and 3systemic

>

>

>

>

>

[Guest guest]

Becki,

Ok I think I understand now. Oh and she just had her eyes checked on the same day she went to her ped. rhemy and they were fine and the eye doc said to just have them checked in no less than a year from now and to go to a regular eye doc, and na don't have any systemic symptoms but she does every once in a while have low grade fevers but very seldom. Thanks for your help Jona and na 2 poly

Allan Larson <alarson1@...> wrote: It sounds like nas arthritis is severe enough to warant it.3ml is only9mg and 2ml is 6mg so those arent really high doses. started at 30mg andhas tapered up and down more times than I can count.If nas not oncalcium consider it,and she needs to have her eyes checked.I think you mightof misunderstood my post.Steroids are a highly powerful antinflammitory thatwork wonders for joint inflamation but for systemic symptoms it takes more,soif your childs systemic and no systemic symptoms are present then you have todrop the steroids to the point that the arthritis is more bothersome but notso much the systemic symptoms come back.In s case he doesnt need to berunning around like a wild child on 10mg steroids with no activearthritis,and no fevers,we need to lower until starts to have painagain.He may only make it to 9mg but he may make it to 8 or 7.Then we wait tosee if his body will adjust to those levels and if the arthritis getsbetter,you drop again,you continue to do this until the fevers come back,ifthat happens you go back up, gain control and start all over again,until youare able to get off the steroids.I hope I havent confused you,mayby someoneelse with poly can explain better.My knowledge is in systemic JRA and howyour supposed to use the lowest dose to keep the systemic symptoms away.Theonly problem is when the arthritis gets bad the fevers are usually rightbehind.Becki and 3systemiclovelyjayc wrote:> -Hi Becki,>> I was wondering if you knew why na would be on steroids this> long? Do you think she has been on them too long? She was put on> them at 12 months old and he has tappered it down only once and that> was just here recently at her last visit. He took it down from 3ml> to 2 ml. She weighs 28 lbs but you can see that she don't have much> fat but you can see her swelling around her joints plainly. She has> poly only and she couldn't look up until he started the prednisone> and I don't really know why she is on them; I thought it was for her> stiffness and swelling. Anything you know about it would be a big> help. Thanks and I hope gets well soon. I'll be praying for> him. I can't stand the thought of them having to crawl and can't> walk. It breaks my heart:( Jona mom of na 2 poly>> - In @y..., Allan Larson <alarson1@b...> wrote:> > Hi its Becki,> > what a week weve had.s sister getting sick and bringing up> memories> > of how this all started. seen the rheumy yesterday and it> wasnt> > with the female who is very gentle with the steroids.We seen top> > dog,thats what I call him.Anyway when had labs last month 10> days> > after his flair they came back being his best ones yet,sed down to> 20> > and wbc down to 17,his rheumy probably thinks I am crazy and it> never> > happened. had no active arthritis anywhere,and I was told> that due> > to the pred has got enough fat on his joints that it looks> like> > swelling so when he swells up just a little it looks awfull.I have> to go> > by how feals,which has been great considering he has> > arthritis(does that make sence).I dont know how I am going to do> this> > but I am supposed to drop 1mg a week until he is in> pain,shouldnt> > take long considering hes at 10mg and 9mg is when he has> problems.Its so> > confusing when you see one rheumy for a couple of months who is> > concerned with swelling and doesnt want in pain,telling me> to take> > things slow and that I know him better then anyone and how hes> > doing,then the top dog comes along again and tells me is> fealing> > way to good that we have to drop quickly,hes on to much steroids.I> know> > that top dog is right,the steroids are for controlling the fevers> and> > organs,not the arthritis so much,thats why kids with poly are only> put> > on it for short periods or not at all,they are that bad for you.It> > breaks my heart having to bring to the point of crawling on> the> > floor again. is usually all or nothing,his rheumy likes for> him to> > be just above a flair but for there is no such thing,hes> either> > good or flairing.I was so worried about catching his sisters> virus> > and the high fever bringing on a flair,now I have a possible bigger> > problem.When I droped off this morning I was told there is an> > epidemic of hand foot and mouth disease.s little friend Ashly> also> > systemic caught it last week and her mom thought she was> flairing,didnt> > know she was sick.When they went in to Vandy Monday,top dog was> > terrified and thought she had leukemia,they drew 4 vials of> blood,and> > when they did the labs she got blood spots all over her arms.She> was> > there for 4hrs before labs came back which were awful,but they> found out> > what it was.So I faxed him this morning to let him know they are> in the> > same class,and I called his ped to let him know.Found out its more> then> > just s class its running rampant everywhere.I wish now I had> walked> > right back in there and grabed him and brought him back home.> will> > have a good memorial weekend I will drop him next week and who> knows> > mayby he will do better this time,hes been on 25mg MTX for a month> now> > so mayby that increase is working real good ,and mayby the> Plaquenil> > will start working soon.My niece has lupas and she told me forget> the> > books could respond as early as 3-4 weeks even though labs> wont> > show it yet.That is what I am hoping for,a quick responce not 3-6> > months.I have rambled enough,hope you all are well.Hugs> > Becki and 3systemic>>>>>