RE: Steroids (Was Re: Re: Hi I'm new)

[Guest guest]

Hello Angel: I saw your post (below) about the metho blood tests, etc. Our daughter (Mickey, now 6, systemic onset jra) got the oral metho for about 6 months, was usually very sick the next day. When they raised the dosage, we went to the injectable. She has had that for about a year, now. Mickey does go once a month for blood tests, the frequency of that never changed. I don't have the exact list with me, but the blood work was extensive - not just the few things you mentioned. It was awful at first, she would cry a lot, but she always held very still and was instantly quiet once it was done. We don't use it anymore, but we used to get Emla cream (get a prescription if you can, its VERY expensive) and if you put it on at least an hour ahead, it numbs quite deeply and is a lot easier on the child. Now she doesn't cry at all, chats casually with the tech (we always make sure its one of two blood technicians she has gotten to know) and watches with great interest. She even compliments them on speed and technique now. I am incredibly proud of her, needless to say.

I give the injections myself (a couple of other posts asked about this) - but we are Canadian and our health plans have really been cut a lot in the last few years. When we began the metho injections, a VON (not sure if you have these in the states, n Order of Nurses, sort of like nurses who do house calls!, very wonderful, warm people, where we are) came to the house, demonstrated it the first time, came 2 more times to talk me through it, then we soloed.... it still gives me the willies, but Mickey actually prefers me to a nurse she doesn't know. She critiques me, also... My husband tried a few times - farm lad, you know, used to "needle the calves" all the time, should be a piece of cake.... but he found 'needling' his own daughter was a little harder to handle and can't even watch anymore when I do it, though he cuddles her while I do. As Mickey says, we make a great team. She likes her younger sister nearby, for moral support, she says. Her younger sister, Kinsey, is quite fascinated by all this and has decided to be a veterinarian so she can help her big sister when she grows up! We have a few pets, I guess it all looks the same to her

Oh, as for someone's question about needing a special nurse, we ran into that also, the first time, because it was metho, a "cancer" drug. I didn't mind too much learning how to do it myself, I know Mickey trusts me, but also, it gives us more freedom for travelling on weekends. My family lives about 7 hours from us, and the hassles of finding and arranging for injections somewhere else would be a major pain.

Hope this helps.

Lynn

Ontario, Canada

RE: Steroids (Was Re: Re: Hi I'm new)

hey Georgina,It's me again! I have another question for someone to hopefully answer. Howoften do most children on Mextho have to have blood work done. (once amonth, once every three months, etc.)And when they check the blood are theyonly checking liver functions or sed rate and other related problems.McKenzie just started on Mextho three weeks ago and she had her first bloodtest today. (not fun)The doctor said at first every three weeks and thenthey start on longer periods for blood test. Just curious for some of youthat have children on it for three or more years. Any response would begreat.Thanks Angel Beers-----Original Message-----From: Georgina [mailto:gmckin@...]Sent: Monday, April 10, 2000 7:36 PM egroupsSubject: Steroids (Was Re: Re: Hi I'm new)Hi Angel,You're right When steroids are first given or when there's anincrease in dose, appetite often goes way up! Josh has been on a slowtapering course since we had to double up from 15mgs to 30mgs during abad flare. He's down to 17.5mgs at this point so his appetite has beenmore normal and stable for months. Sometimes it seemed like his hungercouldn't be satiated! He'd eat breakfast, a snack at recess, lunch, ameal after school, dinner, and still want more! He likes raw fruits andvegetables with low-fat dressing, and I'd buy things like huge bags ofunsalted pretzels to munch on. He also liked having bowls of cereal withmilk, yogurts, you name it. A non-stop eating machine!When first got sick in 5/95, he had a huge weight loss (one ofthe signs of systemic JRA). He looked like he was wasting away and hadno appetite at all. After two weeks back and forth to doctors while hiscondition worsened, he was hospitalized for 2 weeks. They started him onIV steroids there and shortly thereafter, while being rehydrated and fedintravenously, his appetite came back and he started requesting realfood. Major improvement He was also finally able to move, even walkagain. Upon release, he started taking prednisone orally. Next monthit'll be 5 years continuosly, on varied doses as low as 9mgs and as highas 30mgs daily. That's NOT the norm. Most kids with JRA aren't onlong-term steroid use these days, because of known side effects. It canbe very helpful when used for short periods during phases of accuteinflammation. Josh has never had cortisone injections. The arthritis inhis joints often seems almost secondary to systemic involvement. He alsohasn't had any eye involvement.The rounder, fuller face is a common side effect. My son still has thatnow but in the past when he's gotten down to about 12mgs that went away.He also has some excess hair growth. And stores of fatty tissue by theback of his neck. Those changes in appearance can be hard but other sideeffects not seen are even more worrisome. Prednisone can deplete bonemass, making bones brittle and easier to fracture. Calciumsupplementation is important. It can also lead to avascular necrosis.And cause growth retardation/short stature. Bruising and thinning of theskin. Can cause mood swings, sleep disturbances. It can also mask signsof infection ... the list of possible side effects is extremely long!I've heard that most of these side effects can be lessened, even avoided~even with long-term use~ if the child is on alternate day therapyinstead of daily. I would have suggested/demanded that right from thebeginning if I had known back then. Instead, we continue struggling totaper down whenever we can. If my son's arthritis was limited to just afew particular joints, I think I'd prefer to have the steroid injectionsgiven but I have no experience with that and you need to take intoaccount the child's willingness and level of cooperation and like yousaid ... putting them under may not be a good thing, either. It'sdefinitely a hard decision to make, either way. I've known otherchildren who needed steroids for skin problems. Total relief (cure?) injust three weeks of a tapering dose. And others who have taken pill andinhaled form to treat their asthma. Only on an as-needed schedule, forflares. No side effects that I'm aware of. Even my sister's cat takes10mgs prednisone a day, to treat a tumor growth problem! It works reallywell but you do have to be careful about and informed of possible sideeffects.Take care,GeorginaMark Beers wrote:>> Hi Georgina,> I am always just sitting back and reading and learning new info from> everyone but your email caught my interest. How long has Josh been on> Steroids? I guess you are talking about oral steroids too, right? My> daughter has just starting taking them orally and boy talk about appetite> increase more like overload. I never knew a five year old could eat somuch.> We had a appt. today and her weight is the same but her face is reallyround> and full. Not to mention flushed. Is that normal? We try to have> carrots,celery,etc. around the house for her instead of junk but that> doesn't always work. I talked to one mother about her injections (Kenzie)> because usually they (doctor) give her steroid injections in her knees and> her right eye and for her knee she is not put to sleep. So last time they> tried they could not do it because she was way to upset and the doctorsaid> he did not want to take a chance. Now she is on the oral. I don't knowwhat> to think and don't know which way is better for her. The oral seems to be> more dangerous in the long run but putting her to sleep has its cons too.> Your response would be great. Did Josh every have the injections beforethe> oral? How long has he been on the oral? Kenzie is coming offhersthis week> and hopefully she won't have to go back on them again. She still has some> swelling in her knee but overall seems to be in less pain. Her knee still> gives out on her sometimes when she is walking or riding her bike is that> normal too? Sometimes I don't know how to cope with her pain when shefalls.> I try to comfort her but she is just to upset. Hope to talk to you soon> Angel Beers------------------------------------------------------------------------Avoid the lines and visit avis.com for quick and easy onlinereservations. Enjoy a compact car nationwide for only $29 a day!Click here for more details.1/3011/1/_/524922/_/955409902/------------------------------------------------------------------------For links to websites with JRA info visit:http://www.geocities.com/Heartland/Village/8414/Links.html------------------------------------------------------------------------1.6 Million Digital Images! Download one Today from Corbis.com1/3356/1/_/524922/_/955584194/------------------------------------------------------------------------For links to websites with JRA info visit: http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Angel,

Hi, Drese has her blood test done once a month and she has been on the

oral mtx for 7 months now. They check her blood for Anemia, liver

function,mtx level and the regular stuff too. This is just 7 months, so

someone else can answer her question for me too, because her rheumy said

that in June she will no longer have to take it if she keeps doing like she's

doing now.

sweetpea200001@... (Ywellen )

[Guest guest]

hey Georgina,

It's me again! I have another question for someone to hopefully answer. How

often do most children on Mextho have to have blood work done. (once a

month, once every three months, etc.)And when they check the blood are they

only checking liver functions or sed rate and other related problems.

McKenzie just started on Mextho three weeks ago and she had her first blood

test today. (not fun)The doctor said at first every three weeks and then

they start on longer periods for blood test. Just curious for some of you

that have children on it for three or more years. Any response would be

great.

Thanks Angel Beers

Steroids (Was Re: Re: Hi I'm new)

Hi Angel,

You're right When steroids are first given or when there's an

increase in dose, appetite often goes way up! Josh has been on a slow

tapering course since we had to double up from 15mgs to 30mgs during a

bad flare. He's down to 17.5mgs at this point so his appetite has been

more normal and stable for months. Sometimes it seemed like his hunger

couldn't be satiated! He'd eat breakfast, a snack at recess, lunch, a

meal after school, dinner, and still want more! He likes raw fruits and

vegetables with low-fat dressing, and I'd buy things like huge bags of

unsalted pretzels to munch on. He also liked having bowls of cereal with

milk, yogurts, you name it. A non-stop eating machine!

When first got sick in 5/95, he had a huge weight loss (one of

the signs of systemic JRA). He looked like he was wasting away and had

no appetite at all. After two weeks back and forth to doctors while his

condition worsened, he was hospitalized for 2 weeks. They started him on

IV steroids there and shortly thereafter, while being rehydrated and fed

intravenously, his appetite came back and he started requesting real

food. Major improvement He was also finally able to move, even walk

again. Upon release, he started taking prednisone orally. Next month

it'll be 5 years continuosly, on varied doses as low as 9mgs and as high

as 30mgs daily. That's NOT the norm. Most kids with JRA aren't on

long-term steroid use these days, because of known side effects. It can

be very helpful when used for short periods during phases of accute

inflammation. Josh has never had cortisone injections. The arthritis in

his joints often seems almost secondary to systemic involvement. He also

hasn't had any eye involvement.

The rounder, fuller face is a common side effect. My son still has that

now but in the past when he's gotten down to about 12mgs that went away.

He also has some excess hair growth. And stores of fatty tissue by the

back of his neck. Those changes in appearance can be hard but other side

effects not seen are even more worrisome. Prednisone can deplete bone

mass, making bones brittle and easier to fracture. Calcium

supplementation is important. It can also lead to avascular necrosis.

And cause growth retardation/short stature. Bruising and thinning of the

skin. Can cause mood swings, sleep disturbances. It can also mask signs

of infection ... the list of possible side effects is extremely long!

I've heard that most of these side effects can be lessened, even avoided

~even with long-term use~ if the child is on alternate day therapy

instead of daily. I would have suggested/demanded that right from the

beginning if I had known back then. Instead, we continue struggling to

taper down whenever we can. If my son's arthritis was limited to just a

few particular joints, I think I'd prefer to have the steroid injections

given but I have no experience with that and you need to take into

account the child's willingness and level of cooperation and like you

said ... putting them under may not be a good thing, either. It's

definitely a hard decision to make, either way. I've known other

children who needed steroids for skin problems. Total relief (cure?) in

just three weeks of a tapering dose. And others who have taken pill and

inhaled form to treat their asthma. Only on an as-needed schedule, for

flares. No side effects that I'm aware of. Even my sister's cat takes

10mgs prednisone a day, to treat a tumor growth problem! It works really

well but you do have to be careful about and informed of possible side

effects.

Take care,

Georgina

Mark Beers wrote:

>

> Hi Georgina,

> I am always just sitting back and reading and learning new info from

> everyone but your email caught my interest. How long has Josh been on

> Steroids? I guess you are talking about oral steroids too, right? My

> daughter has just starting taking them orally and boy talk about appetite

> increase more like overload. I never knew a five year old could eat so

much.

> We had a appt. today and her weight is the same but her face is really

round

> and full. Not to mention flushed. Is that normal? We try to have

> carrots,celery,etc. around the house for her instead of junk but that

> doesn't always work. I talked to one mother about her injections (Kenzie)

> because usually they (doctor) give her steroid injections in her knees and

> her right eye and for her knee she is not put to sleep. So last time they

> tried they could not do it because she was way to upset and the doctor

said

> he did not want to take a chance. Now she is on the oral. I don't know

what

> to think and don't know which way is better for her. The oral seems to be

> more dangerous in the long run but putting her to sleep has its cons too.

> Your response would be great. Did Josh every have the injections before

the

> oral? How long has he been on the oral? Kenzie is coming offhersthis week

> and hopefully she won't have to go back on them again. She still has some

> swelling in her knee but overall seems to be in less pain. Her knee still

> gives out on her sometimes when she is walking or riding her bike is that

> normal too? Sometimes I don't know how to cope with her pain when she

falls.

> I try to comfort her but she is just to upset. Hope to talk to you soon

> Angel Beers

------------------------------------------------------------------------

Avoid the lines and visit avis.com for quick and easy online

reservations. Enjoy a compact car nationwide for only $29 a day!

Click here for more details.

1/3011/1/_/524922/_/955409902/

------------------------------------------------------------------------

For links to websites with JRA info visit:

http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Hi,

My daughter has been on MTX for a little over a year. We do the bllod tests

every 4 weeks. They check liver functions as well as a complete cbc with

platelets. As mtx is an immune suppressing drug and can cause the white cells

do go down. My daughter has found that the use of EMLA cream is a great help

on those lab days. It is a numbing cream that you can put on about 45 minutes

before the labs ..we wrap a little plastic wrap around the area we put the

cream on tends to work better that way. It is by RX so ask your dr.they

should be willing to give it to you. Also drinking something before you go a

hydrated person is alot easier to " stick " . My daughter has had to have a few

repeat tests when her liver functions showed that they were elevated. We

later found out that it was because the labs were preformed too close to her

MTX dose. You should try to schedule them as far away from her last dose as

possible. My daughter takes her's by injection now on Fridays ..so her labs

need to be on Thursdays. Hope this helps...If you have any questions feel

free ...Kris

[Guest guest]

Hi Angel,

Robbie gets his blood work done for MTX and everything else every 6

weeks instead of 4 week. This is per the Childrens Hospital in

Seattle. Jana

[Guest guest]

Thanks so much for you response. The cream sounds like a good idea but with Kenzie I think it is more of mind over matter. When the Rheumy tried to give her a injection in her knee she was sedated and trust me she was talking weird stuff so I know she was out of it but when the doctor came in with the shot she went crazy and just snapped out of it. The doctor said he could not do the injection that it was mind over matter. So I don't think the cream would work because it is not really the pain of the needle it is just because she doesn't want this to happen. I hope we didn't miss anything on the blood work because the Rheumy's office was supposed to fax the work papers over to the ped office but of course never did. So the ped. office this being the first test just guessed at what needed to be done. Hopefully the right test. We also decided to go to the ped office for the blood work because that is the only doctor she has known for along time and we thought she would be more comfortable with the same person doing it all the time instead of someone new each blood test. Lucky for us Kenzie has not been sick on the Metho. but she has only been on it for three weeks. We decide to give it to her on Sunday so she would be home in case she did get sick. Do they usually get sick right away or does it take a few months on being on the metho?

Well thanks again. I talk to you all soon.

-----Original Message-----From: barry collins [mailto:collins4@...]Sent: Wednesday, April 12, 2000 4:20 PM egroupsSubject: Re: Steroids (Was Re: Re: Hi I'm new)

Hello Angel: I saw your post (below) about the metho blood tests, etc. Our daughter (Mickey, now 6, systemic onset jra) got the oral metho for about 6 months, was usually very sick the next day. When they raised the dosage, we went to the injectable. She has had that for about a year, now. Mickey does go once a month for blood tests, the frequency of that never changed. I don't have the exact list with me, but the blood work was extensive - not just the few things you mentioned. It was awful at first, she would cry a lot, but she always held very still and was instantly quiet once it was done. We don't use it anymore, but we used to get Emla cream (get a prescription if you can, its VERY expensive) and if you put it on at least an hour ahead, it numbs quite deeply and is a lot easier on the child. Now she doesn't cry at all, chats casually with the tech (we always make sure its one of two blood technicians she has gotten to know) and watches with great interest. She even compliments them on speed and technique now. I am incredibly proud of her, needless to say.

I give the injections myself (a couple of other posts asked about this) - but we are Canadian and our health plans have really been cut a lot in the last few years. When we began the metho injections, a VON (not sure if you have these in the states, n Order of Nurses, sort of like nurses who do house calls!, very wonderful, warm people, where we are) came to the house, demonstrated it the first time, came 2 more times to talk me through it, then we soloed.... it still gives me the willies, but Mickey actually prefers me to a nurse she doesn't know. She critiques me, also... My husband tried a few times - farm lad, you know, used to "needle the calves" all the time, should be a piece of cake.... but he found 'needling' his own daughter was a little harder to handle and can't even watch anymore when I do it, though he cuddles her while I do. As Mickey says, we make a great team. She likes her younger sister nearby, for moral support, she says. Her younger sister, Kinsey, is quite fascinated by all this and has decided to be a veterinarian so she can help her big sister when she grows up! We have a few pets, I guess it all looks the same to her

Oh, as for someone's question about needing a special nurse, we ran into that also, the first time, because it was metho, a "cancer" drug. I didn't mind too much learning how to do it myself, I know Mickey trusts me, but also, it gives us more freedom for travelling on weekends. My family lives about 7 hours from us, and the hassles of finding and arranging for injections somewhere else would be a major pain.

Hope this helps.

Lynn

Ontario, Canada

RE: Steroids (Was Re: Re: Hi I'm new)

hey Georgina,It's me again! I have another question for someone to hopefully answer. Howoften do most children on Mextho have to have blood work done. (once amonth, once every three months, etc.)And when they check the blood are theyonly checking liver functions or sed rate and other related problems.McKenzie just started on Mextho three weeks ago and she had her first bloodtest today. (not fun)The doctor said at first every three weeks and thenthey start on longer periods for blood test. Just curious for some of youthat have children on it for three or more years. Any response would begreat.Thanks Angel Beers-----Original Message-----From: Georgina [mailto:gmckin@...]Sent: Monday, April 10, 2000 7:36 PM egroupsSubject: Steroids (Was Re: Re: Hi I'm new)Hi Angel,You're right When steroids are first given or when there's anincrease in dose, appetite often goes way up! Josh has been on a slowtapering course since we had to double up from 15mgs to 30mgs during abad flare. He's down to 17.5mgs at this point so his appetite has beenmore normal and stable for months. Sometimes it seemed like his hungercouldn't be satiated! He'd eat breakfast, a snack at recess, lunch, ameal after school, dinner, and still want more! He likes raw fruits andvegetables with low-fat dressing, and I'd buy things like huge bags ofunsalted pretzels to munch on. He also liked having bowls of cereal withmilk, yogurts, you name it. A non-stop eating machine!When first got sick in 5/95, he had a huge weight loss (one ofthe signs of systemic JRA). He looked like he was wasting away and hadno appetite at all. After two weeks back and forth to doctors while hiscondition worsened, he was hospitalized for 2 weeks. They started him onIV steroids there and shortly thereafter, while being rehydrated and fedintravenously, his appetite came back and he started requesting realfood. Major improvement He was also finally able to move, even walkagain. Upon release, he started taking prednisone orally. Next monthit'll be 5 years continuosly, on varied doses as low as 9mgs and as highas 30mgs daily. That's NOT the norm. Most kids with JRA aren't onlong-term steroid use these days, because of known side effects. It canbe very helpful when used for short periods during phases of accuteinflammation. Josh has never had cortisone injections. The arthritis inhis joints often seems almost secondary to systemic involvement. He alsohasn't had any eye involvement.The rounder, fuller face is a common side effect. My son still has thatnow but in the past when he's gotten down to about 12mgs that went away.He also has some excess hair growth. And stores of fatty tissue by theback of his neck. Those changes in appearance can be hard but other sideeffects not seen are even more worrisome. Prednisone can deplete bonemass, making bones brittle and easier to fracture. Calciumsupplementation is important. It can also lead to avascular necrosis.And cause growth retardation/short stature. Bruising and thinning of theskin. Can cause mood swings, sleep disturbances. It can also mask signsof infection ... the list of possible side effects is extremely long!I've heard that most of these side effects can be lessened, even avoided~even with long-term use~ if the child is on alternate day therapyinstead of daily. I would have suggested/demanded that right from thebeginning if I had known back then. Instead, we continue struggling totaper down whenever we can. If my son's arthritis was limited to just afew particular joints, I think I'd prefer to have the steroid injectionsgiven but I have no experience with that and you need to take intoaccount the child's willingness and level of cooperation and like yousaid ... putting them under may not be a good thing, either. It'sdefinitely a hard decision to make, either way. I've known otherchildren who needed steroids for skin problems. Total relief (cure?) injust three weeks of a tapering dose. And others who have taken pill andinhaled form to treat their asthma. Only on an as-needed schedule, forflares. No side effects that I'm aware of. Even my sister's cat takes10mgs prednisone a day, to treat a tumor growth problem! It works reallywell but you do have to be careful about and informed of possible sideeffects.Take care,GeorginaMark Beers wrote:>> Hi Georgina,> I am always just sitting back and reading and learning new info from> everyone but your email caught my interest. How long has Josh been on> Steroids? I guess you are talking about oral steroids too, right? My> daughter has just starting taking them orally and boy talk about appetite> increase more like overload. I never knew a five year old could eat somuch.> We had a appt. today and her weight is the same but her face is reallyround> and full. Not to mention flushed. Is that normal? We try to have> carrots,celery,etc. around the house for her instead of junk but that> doesn't always work. I talked to one mother about her injections (Kenzie)> because usually they (doctor) give her steroid injections in her knees and> her right eye and for her knee she is not put to sleep. So last time they> tried they could not do it because she was way to upset and the doctorsaid> he did not want to take a chance. Now she is on the oral. I don't knowwhat> to think and don't know which way is better for her. The oral seems to be> more dangerous in the long run but putting her to sleep has its cons too.> Your response would be great. Did Josh every have the injections beforethe> oral? How long has he been on the oral? Kenzie is coming offhersthis week> and hopefully she won't have to go back on them again. She still has some> swelling in her knee but overall seems to be in less pain. Her knee still> gives out on her sometimes when she is walking or riding her bike is that> normal too? Sometimes I don't know how to cope with her pain when shefalls.> I try to comfort her but she is just to upset. Hope to talk to you soon> Angel Beers------------------------------------------------------------------------Avoid the lines and visit avis.com for quick and easy onlinereservations. Enjoy a compact car nationwide for only $29 a day!Click here for more details.1/3011/1/_/524922/_/955409902/------------------------------------------------------------------------For links to websites with JRA info visit:http://www.geocities.com/Heartland/Village/8414/Links.html------------------------------------------------------------------------1.6 Million Digital Images! Download one Today from Corbis.com1/3356/1/_/524922/_/955584194/------------------------------------------------------------------------For links to websites with JRA info visit: http://www.geocities.com/Heartland/Village/8414/Links.html

For links to websites with JRA info visit: http://www.geocities.com/Heartland/Village/8414/Links.html