Update on

[Guest guest]

Georgina,

Yes, the orthotics are removable.

Teri

[Guest guest]

Hi

, who is 's age (They were in the same class at the

conference), is only on 12.5 mg of methotrexate by injection as of 3

weeks ago, but was on 20 mg for quite a while. It took that much to get

her under control. She is smaller than , if I remember

correctly, and the rheumatologist said that we could go a little higher

if we had to.

Hope that helps you a little. I'm glad to hear things are looking up.

Liz

LINDA BUDD wrote:

>

> Hi Everybody,

> Just wanted to update you on . She went to the Rheumy on

> Wed. Everything is really looking good. It is one year since her

> systemic jra came back, and after months of waiting for things to

> look better, it seems they finally are.

> Her Sed rate is down to 25! (That is so much better than the 126

> it was over the summer.) The doctor looked at her knee and said it

> does not need to be injected after all. She said it looked great.

> I even decreased her Indocin to one pill one day, two pills the

> next. She was on two 25mgs. a day. I will alternate days for a month

> and see how it goes. Then hopefully one pill a day till her sed rate

> comes down a little more.

> The doctor really thinks the Methotrexate is doing its job. She

> takes 22.5mgs a week by injection. Do any of your kids take that high

> of dose? It seems like when I read the posts nobody is higher than

> 15mgs.

> Well I just wanted to let eveyone know how happy I am. I cant wait

> for school to start again, we dont go back till Tuesday.

> does have a big cold sore on her lip. The doctor prescibed an

> ointment for it, but it doesnt seem to be working. She has a little

> cough and runny nose, I hope this cold doesnt make her flare

> again.She has not had a cold in a year. Thanks for listening and

> Welcome to all the new members, this group is great! B.

>

> For links to websites with JRA info please visit:

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

>

> To manage your subscription settings, visit:

> subscribe/

[Guest guest]

Hi,

Meghann (nearly 14) pauciarticular onset is on 25 mg orally once a week

along with Sulindac (clinoril) 150 mg twice daily and of course the daily

(except the day she takes methotrexate) dose of folic acid. Until I got on

this list I thought that 25 mg was sort of the norm...guess I was wrong.

Sharon and Meghann

JRA and PRS

> Hi

> , who is 's age (They were in the same class at the

> conference), is only on 12.5 mg of methotrexate by injection as of 3

> weeks ago, but was on 20 mg for quite a while.

Liz

> LINDA BUDD wrote:

> >

> > > > The doctor really thinks the Methotrexate is doing its job. She

> > takes 22.5mgs a week by injection. Do any of your kids take that high

> > of dose? It seems like when I read the posts nobody is higher than

> > 15mgs.

[Guest guest]

Great news linda!

We hope our daughter catches up with yours real soon. Keep her

positive! You keep positive too.

Bob

- In egroups, " LINDA BUDD " <BUDDFAM4@H...> wrote:

> Hi Everybody,

> Just wanted to update you on . She went to the Rheumy on

> Wed. Everything is really looking good. It is one year since her

> systemic jra came back, and after months of waiting for things to

> look better, it seems they finally are.

> Her Sed rate is down to 25! (That is so much better than the 126

> it was over the summer.) The doctor looked at her knee and said it

> does not need to be injected after all. She said it looked great.

> I even decreased her Indocin to one pill one day, two pills the

> next. She was on two 25mgs. a day. I will alternate days for a

month

> and see how it goes. Then hopefully one pill a day till her sed

rate

> comes down a little more.

> The doctor really thinks the Methotrexate is doing its job. She

> takes 22.5mgs a week by injection. Do any of your kids take that

high

> of dose? It seems like when I read the posts nobody is higher than

> 15mgs.

> Well I just wanted to let eveyone know how happy I am. I cant

wait

> for school to start again, we dont go back till Tuesday.

> does have a big cold sore on her lip. The doctor prescibed an

> ointment for it, but it doesnt seem to be working. She has a little

> cough and runny nose, I hope this cold doesnt make her flare

> again.She has not had a cold in a year. Thanks for listening and

> Welcome to all the new members, this group is great! B.

[Guest guest]

Hi ,

Thanks for the update. It's nice to hear good news about our children.

wow. that's a tremendous improvement in 's SED rate. I thought

was the only one who had the numbers get so high like that.

Josh takes, still, just 15mg of MTX every week. I think they base the

maximum dosage on body mass and weight. He weighs about 64 pounds.

Take care,

Georgina

LINDA BUDD wrote:

>

> Hi Everybody,

> Just wanted to update you on . She went to the Rheumy on

> Wed. Everything is really looking good. It is one year since her

> systemic jra came back, and after months of waiting for things to

> look better, it seems they finally are.

> Her Sed rate is down to 25! (That is so much better than the 126

> it was over the summer.) The doctor looked at her knee and said it

> does not need to be injected after all. She said it looked great.

> I even decreased her Indocin to one pill one day, two pills the

> next. She was on two 25mgs. a day. I will alternate days for a month

> and see how it goes. Then hopefully one pill a day till her sed rate

> comes down a little more.

> The doctor really thinks the Methotrexate is doing its job. She

> takes 22.5mgs a week by injection. Do any of your kids take that high

> of dose? It seems like when I read the posts nobody is higher than

> 15mgs.

> Well I just wanted to let eveyone know how happy I am. I cant wait

> for school to start again, we dont go back till Tuesday.

> does have a big cold sore on her lip. The doctor prescibed an

> ointment for it, but it doesnt seem to be working. She has a little

> cough and runny nose, I hope this cold doesnt make her flare

> again.She has not had a cold in a year. Thanks for listening and

> Welcome to all the new members, this group is great! B.

[Guest guest]

Yeay for !

Update on

Hi everbody,

Just to let you know is down to 2cc of naprosyn twice daily.

The discontinue date is June 6th. Keeping our fingers crossed.So far

absolutely no signs of the JRA!!!!

Teri

[Guest guest]

Teri-

Great news for . We're all pulling for her.

Diane

[Guest guest]

Hi Teri,

Well, just a week more until is scheduled to discontinue her meds.

Hope everything is still going well You've both been in our thoughts.

Aloha,

Georgina

Teri wrote:

>

> Hi everbody,

> Just to let you know is down to 2cc of naprosyn twice daily.

> The discontinue date is June 6th. Keeping our fingers crossed.So far

> absolutely no signs of the JRA!!!!

> Teri

[Guest guest]

Great news, Becki!!! I hope continues to feel well.

Diane

[Guest guest]

Great news Becki, with this diseace we often times take what we can get

and hope for it to last for ever. So for how ever long it does, is indeed

a great joy for !

Go !!!

Big hugs little guys!

Rusty Limbs

[Guest guest]

WoW that's simply wonderful news Becki,Keep your hopes up and your smiles on hun !!! You'll have to start some vitamins to keep up with now:):):)Tree:):) update on Hi ,its Becki.I hope I dont jinx but I cant keep it in anylonger.I have been sitting back and watching my sons symptoms justdissapear.Thanks to all the info from you guys I decided to have sMTX switched from oral to injections.3 days after the first one thingsjust went away.Up at 5:00 running and jumping,wrestling with hissister-no morning stifness no pain no complaints of anything no heat inhis joints his little velcro shoes will close all the way,he is like theenergizer bunny and keeps going and going.He scared me in walmart sat.Hetook off on me and I couldnt catch him he rounded the corner and wasgone,usually I can just walk fast and catch up in just a few strides,notanymore.He use to get so winded running half way around the house now hecan play all day without getting tired or sore.Reality check time.just got droped to 8mg prednisilone so we have a little ways to go yet,Iguess we just have to see how low he can go without having to raise hisMTX up rigt now he gets 15mg able to go to20mg so we do have a littleroom before having to add something else.Even if things dont go the wayI hope atleast has had 1week to feel like a normal 3 year old.lots of hugs Becki and 3systemicFor links to websites about arthritis and JRA, visit:http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

How hard - it is almost like starting over - but this time with more knowledge.

Hang in there, our thoughts are with you. The ambiguity about the treatment is

sometimes the hardest part - except for seeing how much they suffer without it.

Hugs to you and . After the terrible sad news yesterday I went home and

gave my little guy extra hugs - he kept saying " Let go Mom, I want to decorate

the tree! "

Val

Rob's Mom (4,systemic)

In a message dated Fri, 14 Dec 2001 12:00:48 PM Eastern Standard Time,

dbornscheu@... writes:

> I had to the doctor yesterday. With much reluctance, I've agreed to

> start her on MTX. It's hard to believe just a few months ago, was 100%

> fine. It almost seemed like this disease was just a bad dream she'd gone so

> long with no symptoms. But when it came back, it came back so much worse.

> She's been on a downhill spiral. I knew it could happen, and even

> semi-expected it, but it's still mind boggling how quickly things can change.

> Anyway, I'm taking her for labs today and will start her on the MTX this

> weekend. We'll also increase her dose of Relafen. The plan is to move her

> quickly to Enbrel if she doesn't respond. Prior to 's remission, we'd

> considered this course of treatment and I got lots of input from everybody

> here. I heard good and bad about these drugs, but mostly good. I know MTX

> is used safely by lots of your kids. Still, irrational though it is, I feel

> like I'm about to put poison in her body. I didn't sleep a wink last night.

> I know many of you know what I'm talking about. I'll keep you posted. I

> hate this disease!!!

>

> Diane (, 2, pauci)

>

>

> For links to websites about arthritis and JRA, visit:

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

>

>

[Guest guest]

Diane,

I am so sorry to hear about . Her being in remission gave me so much hope. The methotrexate has been very successful so far for Nikki but it does take 3 -4 months to see the full effects as they usually steadily increase the dosage. I hope it works for .

Chris

Update on

I had to the doctor yesterday. With much reluctance, I've agreed to

start her on MTX. It's hard to believe just a few months ago, was 100%

fine. It almost seemed like this disease was just a bad dream she'd gone so

long with no symptoms. But when it came back, it came back so much worse.

She's been on a downhill spiral. I knew it could happen, and even

semi-expected it, but it's still mind boggling how quickly things can change.

Anyway, I'm taking her for labs today and will start her on the MTX this

weekend. We'll also increase her dose of Relafen. The plan is to move her

quickly to Enbrel if she doesn't respond. Prior to 's remission, we'd

considered this course of treatment and I got lots of input from everybody

here. I heard good and bad about these drugs, but mostly good. I know MTX

is used safely by lots of your kids. Still, irrational though it is, I feel

like I'm about to put poison in her body. I didn't sleep a wink last night.

I know many of you know what I'm talking about. I'll keep you posted. I

hate this disease!!!

Diane (, 2, pauci)

[Guest guest]

Chris-

Thanks, I hope it works, too. She had no apparent ill effects from the

first dose. But last night, I noticed yet another joint involved. She's up

to four now. I'm really bumming.

Diane

[Guest guest]

Hi Becki, yea it is a bit slow I guess everyone is busy on their Santa

runs, bug rush for the last minute bargins.

Sorry to hear that had to have increase in is Mtrx. always like to

read about the decreases of drugs.

How is the weather where your at? here in Mich. is cold and wet, been

having rain for last few days.

It feels like its going to be a long long winter this year, you know, the

type when your snow bound. My bones seem to think so!

Well I want to wish you all a Very Happy Holiday and the Happest of New

Year!

Rusty Limbs

[Guest guest]

Becki,

what type of insurance do you have. I have Health Net, an HMO.

Health Net did not cover my daughters Enbrel, but the " group " did. I

have worked in medical insurance before and have never heard of this

happening so I was very happily surprised that the primary group

covered injectibles fully.

> Hi,its becki,seems to be slow around the holidays,just a little

update

> on Dave.He is responding VERY well to the increase in pred,have to

keep

> him there until after the holidays.He was also raised to 17.5 mg MTX

> injection form and a application for Enbrel.Insurance will cover 80%

> thank goodness.Doctors seem to be pulling away from the old,and

going

> straight for the new.Plaquenilseems to be the drug of choice for

> Lupus.My niece either has hair or does not,she has been on that

drug for

> years to control systemic symptoms. flaired with systemic

symptoms

> 3 times in 6 weeks,just curious?How could low doses affect him?I

have

> read a couple of things that refer to the differance between JRA

> treatmant and stills disease.Plaquenil is very effective in

controlling

> organ involvement inLupas patiants.A little rambiling,but not to

> much.Becki and 3systemic

[Guest guest]

Where do you live? You mentioned the U.P. not sure if you live there or just

have relatives there--me,too. Iron Mountain area. We live in Traverse City

and drive to Detroit (Farmington Hills) to see the ped. Rheum. Just curious.

Deb Swaney (mom to Meg 12yr. old pauci)

[Guest guest]

Upper Pennisula? where abouts. I have relatives all over that part of

Michigan.

My one older sister and husband bought a place in Tennesee, between

City and Bristol.

So I'll be able to visit Tennesee once and awhile. Also have a nice near

BolinGreen KY. as well.

And lots of relatives down around Royal Oak and the Greater Detriot area,

to tell the truth I've got relatives all over the country, I'm just

starting to locate....

As for your cousin in the U.P. of MI. well the weather is really great on

my arthritis in the winter months, because of the low-sub zero- timps.

There is little moisture or dampness.

But regardless, I fare well where ever I go....

Best to and tell him to save a cookie for Santa!!!

Your Rusty jra buddy!

Rusty Limbs

[Guest guest]

Hi Deb Swaney, yes I have relatives in U.P. from Newberry to Escanoba. My

self I live in Flint Michigan.

Man a drive all the way from Traverse City to Detriot! I used to have to

go to AnnArbor until I got tired of it and told them I needed to see a

Rheumatologist in my own area. But by that time I was an adult so it was

easier. Although there still wasn't to many doctors specializing in the

field.

If you like you can give me a call sometime, I'd be more than happy to

talk with you.

Your jra buddy

Rusty Limbs

On Tue, 18 Dec 2001 20:54:43 EST gladswan@... writes:

> Where do you live? You mentioned the U.P. not sure if you live there

> or just

> have relatives there--me,too. Iron Mountain area. We live in

> Traverse City

> and drive to Detroit (Farmington Hills) to see the ped. Rheum. Just

> curious.

> Deb Swaney (mom to Meg 12yr. old pauci)

>

>

[Guest guest]

Hi,we have American Medical Security a ppo.I have talked to my insurance

company twice over the Enbrel,both times it was the same.My drug card will

not cover any injectable except insullin,but my major medical will.The rheumy

has to call to give approval,then they tell him where I can get it or they

may have it shiped to me,I dont know all the details.They also told me I

would have to pay my co-pay and 20% I hope my huge $2000 deductable does not

apply they never mentioned it either time.

contessa123992000 wrote:

> Becki,

>

> what type of insurance do you have. I have Health Net, an HMO.

> Health Net did not cover my daughters Enbrel, but the " group " did. I

> have worked in medical insurance before and have never heard of this

> happening so I was very happily surprised that the primary group

> covered injectibles fully.

>

>

> > Hi,its becki,seems to be slow around the holidays,just a little

> update

> > on Dave.He is responding VERY well to the increase in pred,have to

> keep

> > him there until after the holidays.He was also raised to 17.5 mg MTX

> > injection form and a application for Enbrel.Insurance will cover 80%

> > thank goodness.Doctors seem to be pulling away from the old,and

> going

> > straight for the new.Plaquenilseems to be the drug of choice for

> > Lupus.My niece either has hair or does not,she has been on that

> drug for

> > years to control systemic symptoms. flaired with systemic

> symptoms

> > 3 times in 6 weeks,just curious?How could low doses affect him?I

> have

> > read a couple of things that refer to the differance between JRA

> > treatmant and stills disease.Plaquenil is very effective in

> controlling

> > organ involvement inLupas patiants.A little rambiling,but not to

> > much.Becki and 3systemic

>

>

> For links to websites about arthritis and JRA, visit:

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

>

>

[Guest guest]

Hi,we live in Tenessee,so we do not get much snow,usually just cold and

rain,this winter looks like it is going to be mild,spring bushes have bloomed

and the trees have budded,they wont pop though.My whole family is from

michigan,except me,they all live in Royal Oak and a little country town near

called Parma,I even have a cousin crazy enough to live on the

northern peninsila. is feeling ALOT better,the increase in MTX doesnt

really bother me,what bugs me is that made it to 6mg pred before his

first flair,then it happened at 9mg and again at 12mg so now we are back to

24mg we havent been there since 2 weeks after diagnoses at least he has the

MTX doing its job and he is alot better than before,no morning stifness and

rarely complains,lots of fatigue though.I hope you have a very merry

christmas as well,Take care. Becki and 3systemic

A Morse wrote:

> Hi Becki, yea it is a bit slow I guess everyone is busy on their Santa

> runs, bug rush for the last minute bargins.

> Sorry to hear that had to have increase in is Mtrx. always like to

> read about the decreases of drugs.

> How is the weather where your at? here in Mich. is cold and wet, been

> having rain for last few days.

> It feels like its going to be a long long winter this year, you know, the

> type when your snow bound. My bones seem to think so!

> Well I want to wish you all a Very Happy Holiday and the Happest of New

> Year!

> Rusty Limbs

>

>

> For links to websites about arthritis and JRA, visit:

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

>

>

[Guest guest]

Sorry I live in Tennessee,born and bred,really bad southern accent,the only one

in my huge family that does not live in Michigan,besides my mom.

gladswan@... wrote:

> Where do you live? You mentioned the U.P. not sure if you live there or just

> have relatives there--me,too. Iron Mountain area. We live in Traverse City

> and drive to Detroit (Farmington Hills) to see the ped. Rheum. Just curious.

> Deb Swaney (mom to Meg 12yr. old pauci)

>

>

> For links to websites about arthritis and JRA, visit:

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

>

>

[Guest guest]

Hi dayna,

Oh, I'm so happy to hear that things are finally moving in a more positive direction. Yea !!!! Both of you will be in our thoughts, and we're wishing you much success during these next challenges. I sure do hope that the prednisone tapering schedule will work out well. I know how excited I was, so many times, to start the ball rolling. Finally, at least for us, it's become less of a struggle. So it can be done. Just not quite so easily for some of us. Have patience, go slow ...

Take Care,

Georgina

(13, systemic) saw her rhuemy yesterday. I'm not sure how high her sed rate reached since she was sick, but I know it was 106 at one point in time. I guess you probably know that 15-20 they consider normal. Her last blood draw results, her sed rate was 27!!! We were very excited about that. She has been doing very well, except for the STEROIDS!! As of now, no more pulses of solumedrol!!! Merry Christmas to us!! AND, she is currently taking 10 mg a day of prednisone (among others) and we got a taper calendar. She will be decreasing her daily steroids 1 mg every other week. She is very excited. When got sick she weighed in at 150lbs, she's 5'5". Her first month or so of being sick, she lost 10 pounds. She has now gained over 50 lbs. Still hanging out at 5'5". The hair growth on her body is hard to keep up with, and there's not alot we can do about the stretch marks. But if we can continue to decrease these steroids, she will be doing better soon.By her next appt. in February, she should be down to 5 mg of prednisone a day, they want to hold her at that and see how she is doing. I hope someday we never have to hear the (s) word again!! (Steroids) I know that it got her through a tough time, but she is scarred. I can't complain about the relationship that we've built this year. She's my good friend. Thanks for listening. I hope for the happiest of holidays to all of you. Hold your children close and enjoy!!!Dayna Drennan

[Guest guest]

Hi Becki,

Josh (12, systemic JRA) has been taking both MTX and Plaquinel. They added the Plaquinel a year after the symptoms began, when the pred and MTX and NSAID still didn't control the symptoms (joint activity, fevers, rash, etc).

Good to hear that your insurance will cover most of 's Enbrel. Maybe you can hook up with a local agency to pick up the other 20% or work directly with Immunex and their patient assistance program? Might be worth looking into, if the remaining cost will still be high for you.

I'm glad is responding so well to the increased dose of steroids. Hopefully it won't stay here for too long. Once the others start showing increased effectiveness it should be easier for him to taper down again.

Aloha,

Georgina

Hi,its becki,seems to be slow around the holidays,just a little updateon Dave.He is responding VERY well to the increase in pred,have to keephim there until after the holidays.He was also raised to 17.5 mg MTXinjection form and a application for Enbrel.Insurance will cover 80%thank goodness.Doctors seem to be pulling away from the old,and goingstraight for the new.Plaquenilseems to be the drug of choice forLupus.My niece either has hair or does not,she has been on that drug foryears to control systemic symptoms. flaired with systemic symptoms3 times in 6 weeks,just curious?How could low doses affect him?I haveread a couple of things that refer to the differance between JRAtreatmant and stills disease.Plaquenil is very effective in controllingorgan involvement inLupas patiants.A little rambiling,but not tomuch.Becki and 3systemic

[Guest guest]

Diane,

I know how upsetting it can be. We try so hard to avoid some things but then there comes a time when we're again faced with the possibility, or necessity, of doing something that we don't feel great about, in hopes that maybe the outcome will be better. As long ago as it was, I still vividly remember that time in the hospital room, when 's pediatrician came in with a printout of the list of side effects and drug warnings and possible interactions of MTX that I had asked for, before signing the consent form to have him start taking it. He and the rheumatologist had been consulting by phone and I guess he was pressuring them to get it started quickly, since Josh was already needing to take steroids. Very scary for me. I felt the same way as you did. That this was a very potent poison .... and my child did not need to go this far, to control the illness. He had already done a huge turnaround and it was just a matter of time, or so I believed. Well, they were able to eventually convince me. Even though our plan didn't necessarily work out like we had hoped. It never helped to get Josh off the steroids, like we had expected. At least not for the first five years. But ... in hindsight ... I do think that it was a very valuable addition to 's medicines. I really do feel that it is what has helped the most to prevent major deformity of his joints. That in itself means so much to us. After Josh took it for a while and we didn't see any major side effects, I was able to relax a little. I've come to respect it and am very glad he was one of the kids that's able to tolerate it well. Josh still doesn't like it. Makes him feel weird, dizzy, make extra saliva ... makes him very tired afterwards, sometimes into the next day. I'm sure once he's an adult he will probably want to stop taking it. May need to, when and if he wants to have kids of his own, but for now ... it's just a part of our weekly routine. He puts up with it and is thankful, too, if that's what's kept his joints in such good shape. I hope that, in time, your decision will become easier for you to live with. And most especially, I hope that the MTX works really well for , with no serious side effects. You will be in our thoughts.

Take Care, Diane,

Georgina

I had to the doctor yesterday. With much reluctance, I've agreed to start her on MTX. It's hard to believe just a few months ago, was 100% fine. It almost seemed like this disease was just a bad dream she'd gone so long with no symptoms. But when it came back, it came back so much worse. She's been on a downhill spiral. I knew it could happen, and even semi-expected it, but it's still mind boggling how quickly things can change. Anyway, I'm taking her for labs today and will start her on the MTX this weekend. We'll also increase her dose of Relafen. The plan is to move her quickly to Enbrel if she doesn't respond. Prior to 's remission, we'd considered this course of treatment and I got lots of input from everybody here. I heard good and bad about these drugs, but mostly good. I know MTX is used safely by lots of your kids. Still, irrational though it is, I feel like I'm about to put poison in her body. I didn't sleep a wink last night. I know many of you know what I'm talking about. I'll keep you posted. I hate this disease!!!

Diane (, 2, pauci)