Re: Many questions....& Understanding Lab/Blood Tests

[Guest guest]

Hi Lynn,

I posted an article earlier about a new generic version of Cytoxin. That

may be the drug you were thinking of. They wanted to give it to Josh at

one time too but I decided against it. We got through that flare with a

higher dose of prednisone instead. Others here have tried it, though.

Our appt last week went well. Josh is doing really good right now.

Lowered the dose of pred by 2.5mgs. And he seems to be handling it

exceptionally well. I'm so relieved Now it's just another of those

wait and sees, till next month. Hopefully we can decrease again without

stirring anything up.

Let me see if I can find the URL for info on blood tests. I know

has a really good section about that on the Still's Disease

Foundation website. Visit http://www.stillsdisease.org and on the upper

left side you'll see the Guide to Lab Tests. You can also try:

http://www.orthop.washington.edu/Bone%20and%20Joint%20Sources/xzzzzzlz1_2.html

Hope this helps a little.

~Georgina

Hi Georgina:

No, you're right, we haven't been giving Mickey calcium supplements,

though we are starting soon. She was getting lots by drinking a lot of

milk, but she has recently cut her milk consumption by about 50%. Not

sure why, she just got tired of it. I've

got her drinking the calcium added orange juice, and we're recording all

her dietary intake for the dietician at Toronto Sick Kids to examine and

make recommendations.

She had one bone scan when the arthritis was first diagnosed, I'm not

sure if that is the same as this dexascan you mentioned. Oh, and yes,

all the meds seem to have kept Mickey's joints from much damage, too.

She has some scarring around her ankles from the injections (I gather if

any of it gets on the skin inadvertantly, it can do that) but its no big

deal, really.

Mickey is now down to 7.5mgs of prednisone a day- and she weighs about

33 lbs. She swings up and down between about 29 and 35 lbs in weight.

Nobody else seems to mention the weight of their child, but I know

Mickey's doses are calculated on how much she weighs, a certain dose per

pound of body weight. She is about 3'4 " tall. Which is at the low end of

normal for her age, but she has been this height since she was 3, when

all of this started. She gets the same dose of metho that Josh does, and

3ml/3x/day of the indomethacin. Same cytotec, 1/2 tab morning and night.

Plaquenil has never been mentioned to us, I'm not sure what that is.

Last fall the docs discussed putting her on - great, my mind went blank

on the name - the same stuff they put transplant patients on to keep

their bodies from rejecting the drug. It was only touched on, and I'm

not sure if it was meant to replace one of her current drugs, or be

added to the mix. At that point we'd gotten her prednisone down to 2ml

per day - an all time low for us, we'd never gotten her below 5ml before

without a big flare. We have to taper her really

slowly as well. When she was at the 2ml before last Christmas, she

flared so badly, they hospitalized her for 3 days, I guess her SED rate

was so high it was a big worry. So this has been a really slow taper for

her too.

Do you understand all the blood test stuff? I get all the numbers from

our doctor, and I've gotten to know if one number is up and others down,

etc, that it is good or bad indications, but I've never found in all my

reading anything that really explained it very well. If you know of any

book - or website!!- please let me know.

Hope your appointment went well for Josh. You know what amazes me? Our

kids are such incredible, brave, stoic little people - and wise beyond

their years, it seems. I am in awe of their courage and spirit.

Lynn

[Guest guest]

Hi Georgina:

Something just jogged my memory. Cyclosporin was the name of the anti-rejection drug mentioned to us. The spelling may be off! I wouldn't mind knowing more about it, we take Mickey to Sick Kids on Tueday next week, and I imagine it will be discussed again there.

Lynn

Re: Many questions.... & Understanding Lab/Blood Tests

Hi Lynn,I posted an article earlier about a new generic version of Cytoxin. Thatmay be the drug you were thinking of. They wanted to give it to Josh atone time too but I decided against it. We got through that flare with ahigher dose of prednisone instead. Others here have tried it, though. Our appt last week went well. Josh is doing really good right now.Lowered the dose of pred by 2.5mgs. And he seems to be handling itexceptionally well. I'm so relieved Now it's just another of thosewait and sees, till next month. Hopefully we can decrease again withoutstirring anything up.Let me see if I can find the URL for info on blood tests. I know has a really good section about that on the Still's DiseaseFoundation website. Visit http://www.stillsdisease.org and on the upperleft side you'll see the Guide to Lab Tests. You can also try: http://www.orthop.washington.edu/Bone%20and%20Joint%20Sources/xzzzzzlz1_2.htmlHope this helps a little.~GeorginaHi Georgina:No, you're right, we haven't been giving Mickey calcium supplements,though we are starting soon. She was getting lots by drinking a lot ofmilk, but she has recently cut her milk consumption by about 50%. Notsure why, she just got tired of it. I'vegot her drinking the calcium added orange juice, and we're recording allher dietary intake for the dietician at Toronto Sick Kids to examine andmake recommendations. She had one bone scan when the arthritis was first diagnosed, I'm notsure if that is the same as this dexascan you mentioned. Oh, and yes,all the meds seem to have kept Mickey's joints from much damage, too.She has some scarring around her ankles from the injections (I gather ifany of it gets on the skin inadvertantly, it can do that) but its no bigdeal, really. Mickey is now down to 7.5mgs of prednisone a day- and she weighs about33 lbs. She swings up and down between about 29 and 35 lbs in weight.Nobody else seems to mention the weight of their child, but I knowMickey's doses are calculated on how much she weighs, a certain dose perpound of body weight. She is about 3'4" tall. Which is at the low end ofnormal for her age, but she has been this height since she was 3, whenall of this started. She gets the same dose of metho that Josh does, and3ml/3x/day of the indomethacin. Same cytotec, 1/2 tab morning and night.Plaquenil has never been mentioned to us, I'm not sure what that is.Last fall the docs discussed putting her on - great, my mind went blankon the name - the same stuff they put transplant patients on to keeptheir bodies from rejecting the drug. It was only touched on, and I'mnot sure if it was meant to replace one of her current drugs, or beadded to the mix. At that point we'd gotten her prednisone down to 2mlper day - an all time low for us, we'd never gotten her below 5ml beforewithout a big flare. We have to taper her reallyslowly as well. When she was at the 2ml before last Christmas, sheflared so badly, they hospitalized her for 3 days, I guess her SED ratewas so high it was a big worry. So this has been a really slow taper forher too. Do you understand all the blood test stuff? I get all the numbers fromour doctor, and I've gotten to know if one number is up and others down,etc, that it is good or bad indications, but I've never found in all myreading anything that really explained it very well. If you know of anybook - or website!!- please let me know. Hope your appointment went well for Josh. You know what amazes me? Ourkids are such incredible, brave, stoic little people - and wise beyondtheir years, it seems. I am in awe of their courage and spirit. Lynn------------------------------------------------------------------------Get paid for the stuff you know!Get answers for the stuff you don't. And get $10 to spend on the site!1/2200/1/_/524922/_/957307240/------------------------------------------------------------------------For links to websites with JRA info visit: http://www.geocities.com/Heartland/Village/8414/Links.html