remicade

[Guest guest]

Lynn,

I¹m sorry you¹re still flaring. You¹ve been flaring way to long, so I hope

your insurance will approve the Remicade without and problems. I hope it is

as helpful as it was before and you have no side effects. Do you think

stress is causing the flare?

a

> I have been in such a terrible flare that yesterday the Rheumy decided

> maybe it is time for remicade. I have held off doing this for a long

> time. But the last couple of month have been terrible. I think it

> started when I went back to school. I have to wait and see if my

> insurance will pay for it. When I called they told me no. However, the

> Rheumy says they will pay for it. I tried remicade four years ago and

> it was great. I had to stop because of stomach problems. Right now the

> worse is I wake up in pain. So I will have to wait and see.

> Hope everyone is doing okay and will be able to enjoy Halloween.

> Lynn (MeMom)

>

>

>

>

[Guest guest]

Thank you and I agree about the insurance companies. We have to pay so

much for the insurance and than they don't want to give us anything. I

will let you know how it turns out. My son is having a Halloween party

tonight. Tomorrow night is my granddaughters b-day so we always go there

for Halloween. Have a good Halloween,

Lynn

Tawny wrote:

> Lynn, I hope that you can start back on the Remciade. Since you took

> it before, you will know what to expect. I hope that the insurance

> comes through, and you can get started soon. I just don't understand

> why we have so many problems with insurance? They rip us off, and

> then we still have to beg for help, it upsets me a little:(

> I hope that you enjoy the weekend, and get some good news for us,

> telling us your approved for your med, take care, Tawny

> PS:Happy Halloween, don't eat too much candy!!!

>

>

> > I have been in such a terrible flare that yesterday the Rheumy

> decided

> > maybe it is time for remicade. I have held off doing this for a

> long

> > time. But the last couple of month have been terrible. I think it

> > started when I went back to school. I have to wait and see if my

> > insurance will pay for it. When I called they told me no.

> However, the

> > Rheumy says they will pay for it. I tried remicade four years ago

> and

> > it was great. I had to stop because of stomach problems. Right

> now the

> > worse is I wake up in pain. So I will have to wait and see.

> > Hope everyone is doing okay and will be able to enjoy Halloween.

> > Lynn (MeMom)

>

>

>

[Guest guest]

I don't know a, I feel like so much is wrong. School is going well. I am

having a hard time with the ceramics class but I am doing it. My friend and I

start

laughing and can't stop. I think the entire class is laughing at us, but we are

having fun. It is just everything else all I seem to do is worry. I will have

to

wait and see what the insurance company says. I ask the doctor because I read

that

remicade can cause cancer. He told me that is false it is just a report the

news

put out. The problem is people with ra are more prone to lynphoma spelling,

and

the fda wanted that on remicade. Sometimes you just have to do what you have to

do,

to be able to function. I'll let you know what happens. I have decided if it

is

approved God wanted me to have it. If not it wasn't in his will and I will go

from

there.

I hope you are okay. At least you won't have to deal with the snow this year.

Enjoy Halloween

Lynn

a54 wrote:

> Lynn,

> I¹m sorry you¹re still flaring. You¹ve been flaring way to long, so I hope

> your insurance will approve the Remicade without and problems. I hope it is

> as helpful as it was before and you have no side effects. Do you think

> stress is causing the flare?

> a

>

> > I have been in such a terrible flare that yesterday the Rheumy decided

> > maybe it is time for remicade. I have held off doing this for a long

> > time. But the last couple of month have been terrible. I think it

> > started when I went back to school. I have to wait and see if my

> > insurance will pay for it. When I called they told me no. However, the

> > Rheumy says they will pay for it. I tried remicade four years ago and

> > it was great. I had to stop because of stomach problems. Right now the

> > worse is I wake up in pain. So I will have to wait and see.

> > Hope everyone is doing okay and will be able to enjoy Halloween.

> > Lynn (MeMom)

> >

> >

> >

> >

[Guest guest]

Lynn, have you considered Enbrel or Humira instead of Remicade? Your

going back on Remicade worries me a little because (1) it was never

determined exactly why you had the troubles with your pancreas and liver

in the first place and (2) should you have a problem when you go back on

Remicade, you have to wait for the last infusion to wear off - which

could be a period of weeks rather than days.

I know a lot of this depends on what your insurance will cover, but you

might ask your rheumatologist if Enbrel or Humira would possibly be

better options.

So sorry about your flare!

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] REMICADE

>

> I have been in such a terrible flare that yesterday the Rheumy decided

> maybe it is time for remicade. I have held off doing this for a long

> time. But the last couple of month have been terrible. I think it

> started when I went back to school. I have to wait and see if my

> insurance will pay for it. When I called they told me no. However,

the

> Rheumy says they will pay for it. I tried remicade four years ago and

> it was great. I had to stop because of stomach problems. Right now

the

> worse is I wake up in pain. So I will have to wait and see.

> Hope everyone is doing okay and will be able to enjoy Halloween.

> Lynn (MeMom)

[Guest guest]

Polly, I was on remicade, max. dose every 4 weeks. In my

insurance EOB it showed that the remicade cost $7000+. It's not

cheap by any means!! And this was having it done at my rheumy's

office!! Marina in Ohio

[Guest guest]

Alia, If your child had systemic and not poly, you would know it. Systemic

is so complicated, and these kids are so sick with it-you would know it.

As for an update on n- she has had a tough year. Last week she caught

my cold, and she has been to the doctor twice now for it. She has had it

for 12 days and just isn't getting any better. Whatever the relation to her

arthritis, I don't know, but the rash is back with the hives. She had been

rash free since starting enbrel. The doctor finally put her on antibiotics

and we are to continue with the enbrel, but I swear-it seems like everytime

I give her the enbrel we take five steps back with the cold. Her wrists

that were injected in Sept. are acting up again. Her right wrist is

starting to turn outward again. She was crying Sunday night because she

couldn't walk because of pain in her foot. The arthritis is now in her

foot, knee, hip , shoulder, elbow and fingers. All of this has come with

this cold that gets no better. She is still sleeping now, but if she is

still bad when she wakes up, it will be back to the doctor. My gut tells me

that her immune system is just breaking down. The rheumy says that if there

is no fever, that we are to go ahead with the enbrel. Does anyone have

their two cents to add to this? Thanks, (n, 15, systemic)

Remicade

>

> We went and saw Caroline's rheumy yesterday. It was a really great

> appointment! Yeah! All her joints look amazing. Also, for the first time

in

> a year her sed rate is NORMAL!!! She has determined that the Enbrel is

> obviously working for all her joints. Unfortunately, it is doing nothing

for

> her eyes. We are going to try cyclosporine, but are hesitant about the

> success of it. We are also unsure if Caroline can tolerate it since she

has

> such sensitive organs.

>

> As a side note, her rheumy said to me that she is not sure if Caroline was

> diagnosed correctly in the beginning and that she has always suspected

that

> she was actually systemic and not poly. I didn't know how to take that,

but

> she said that nothing would have changed in her treatment with either

> diagnosis.

>

> Lastly, we talked about Remicade. We are approaching the one year point on

> Prednisone and Pred Forte drops. That is our rheumy's max for these drugs.

> She says she needs to be completely off both by the one year mark

(January)

> and that we need to find something to supplement it. Cyclosporine might

> work, but she's not confident it will. She also doesn't think that Enbrel

> will be enough without the prednisone, so we are left with Remiciade

> infusions. The problem is she has never given them to children Caroline's

> age and she isn't sure of how many other rheumy's have tried it. Does

anyone

> have any thoughts or history with Remicade on a three year or less??

> Caroline will be three in January so I think that is when we would start

> it...

>

> Thanks everyone!

>

> Alia and Caroline, age 2, poly and uveitis

>

>

>

>

>

[Guest guest]

. You are probably right. Thanks.

Caroline is on Enbrel and had very bad reactions in the beginning. 105

fevers, vomiting, etc.etc. they ultimately decided that they had pushed her

system past it's limit and that is was crashing. We had to lower her MTX and

Enbrel and have done pretty well since then. Hope that helps.

Alia and Caroline, age 2, poly and uveitis

Re: Remicade

Alia, If your child had systemic and not poly, you would know it. Systemic

is so complicated, and these kids are so sick with it-you would know it.

As for an update on n- she has had a tough year. Last week she caught

my cold, and she has been to the doctor twice now for it. She has had it

for 12 days and just isn't getting any better. Whatever the relation to her

arthritis, I don't know, but the rash is back with the hives. She had been

rash free since starting enbrel. The doctor finally put her on antibiotics

and we are to continue with the enbrel, but I swear-it seems like everytime

I give her the enbrel we take five steps back with the cold. Her wrists

that were injected in Sept. are acting up again. Her right wrist is

starting to turn outward again. She was crying Sunday night because she

couldn't walk because of pain in her foot. The arthritis is now in her

foot, knee, hip , shoulder, elbow and fingers. All of this has come with

this cold that gets no better. She is still sleeping now, but if she is

still bad when she wakes up, it will be back to the doctor. My gut tells me

that her immune system is just breaking down. The rheumy says that if there

is no fever, that we are to go ahead with the enbrel. Does anyone have

their two cents to add to this? Thanks, (n, 15, systemic)

Remicade

>

> We went and saw Caroline's rheumy yesterday. It was a really great

> appointment! Yeah! All her joints look amazing. Also, for the first time

in

> a year her sed rate is NORMAL!!! She has determined that the Enbrel is

> obviously working for all her joints. Unfortunately, it is doing nothing

for

> her eyes. We are going to try cyclosporine, but are hesitant about the

> success of it. We are also unsure if Caroline can tolerate it since she

has

> such sensitive organs.

>

> As a side note, her rheumy said to me that she is not sure if Caroline was

> diagnosed correctly in the beginning and that she has always suspected

that

> she was actually systemic and not poly. I didn't know how to take that,

but

> she said that nothing would have changed in her treatment with either

> diagnosis.

>

> Lastly, we talked about Remicade. We are approaching the one year point on

> Prednisone and Pred Forte drops. That is our rheumy's max for these drugs.

> She says she needs to be completely off both by the one year mark

(January)

> and that we need to find something to supplement it. Cyclosporine might

> work, but she's not confident it will. She also doesn't think that Enbrel

> will be enough without the prednisone, so we are left with Remiciade

> infusions. The problem is she has never given them to children Caroline's

> age and she isn't sure of how many other rheumy's have tried it. Does

anyone

> have any thoughts or history with Remicade on a three year or less??

> Caroline will be three in January so I think that is when we would start

> it...

>

> Thanks everyone!

>

> Alia and Caroline, age 2, poly and uveitis

>

>

>

>

>

[Guest guest]

-OOO a normal sed rate.. Im so glad the enbrel seems to be

working wonders for her joints. I am sad about her continued

problems with her eyes, poor baby.

I have no idea about either drug, but i know you will make the right

decision for Miss C... you are an awesome mommy!

hugs Helen and (7,systemic)

p.s Nick is already talking about the JAM in March.. im going to put

a team together for him this year I think. He wanted to know if he

will get another bear in a different color )) he just loves that

bear to pieces. its no longer white and has had to be reparied, but

it is well loved.

-- In , " Pranke, Alia " <Alia.Pranke@t...>

wrote:

> We went and saw Caroline's rheumy yesterday. It was a really great

> appointment! Yeah! All her joints look amazing. Also, for the

first time in

> a year her sed rate is NORMAL!!! She has determined that the

Enbrel is

> obviously working for all her joints. Unfortunately, it is doing

nothing for

> her eyes. We are going to try cyclosporine, but are hesitant about

the

> success of it. We are also unsure if Caroline can tolerate it

since she has

> such sensitive organs.

>

> As a side note, her rheumy said to me that she is not sure if

Caroline was

> diagnosed correctly in the beginning and that she has always

suspected that

> she was actually systemic and not poly. I didn't know how to take

that, but

> she said that nothing would have changed in her treatment with

either

> diagnosis.

>

> Lastly, we talked about Remicade. We are approaching the one year

point on

> Prednisone and Pred Forte drops. That is our rheumy's max for

these drugs.

> She says she needs to be completely off both by the one year mark

(January)

> and that we need to find something to supplement it. Cyclosporine

might

> work, but she's not confident it will. She also doesn't think that

Enbrel

> will be enough without the prednisone, so we are left with

Remiciade

> infusions. The problem is she has never given them to children

Caroline's

> age and she isn't sure of how many other rheumy's have tried it.

Does anyone

> have any thoughts or history with Remicade on a three year or

less??

> Caroline will be three in January so I think that is when we would

start

> it...

>

> Thanks everyone!

>

> Alia and Caroline, age 2, poly and uveitis

[Guest guest]

-,,,,

I so sad to read futher into my mails and see that Mirian is not

doing well. It seems that she and tend to flare at the same

time.. I remember Mirian flared back in feb along with Nick. It

sounds like this has been her worse year. I feel for her and for you.

I will keep you both close in my prayers....Tell her i say she has

to feel better, and SOON!!! ))

Hugs Helen and (7,systemic)

-- In , " WILLIAM PRICE " <bc.price@c...>

wrote:

> Alia, If your child had systemic and not poly, you would know

it. Systemic

> is so complicated, and these kids are so sick with it-you would

know it.

> As for an update on n- she has had a tough year. Last week

she caught

> my cold, and she has been to the doctor twice now for it. She has

had it

> for 12 days and just isn't getting any better. Whatever the

relation to her

> arthritis, I don't know, but the rash is back with the hives. She

had been

> rash free since starting enbrel. The doctor finally put her on

antibiotics

> and we are to continue with the enbrel, but I swear-it seems like

everytime

> I give her the enbrel we take five steps back with the cold. Her

wrists

> that were injected in Sept. are acting up again. Her right wrist

is

> starting to turn outward again. She was crying Sunday night

because she

> couldn't walk because of pain in her foot. The arthritis is now

in her

> foot, knee, hip , shoulder, elbow and fingers. All of this has

come with

> this cold that gets no better. She is still sleeping now, but if

she is

> still bad when she wakes up, it will be back to the doctor. My

gut tells me

> that her immune system is just breaking down. The rheumy says

that if there

> is no fever, that we are to go ahead with the enbrel. Does anyone

have

> their two cents to add to this? Thanks, (n, 15,

systemic)

> Remicade

>

>

> >

> > We went and saw Caroline's rheumy yesterday. It was a really

great

> > appointment! Yeah! All her joints look amazing. Also, for the

first time

> in

> > a year her sed rate is NORMAL!!! She has determined that the

Enbrel is

> > obviously working for all her joints. Unfortunately, it is doing

nothing

> for

> > her eyes. We are going to try cyclosporine, but are hesitant

about the

> > success of it. We are also unsure if Caroline can tolerate it

since she

> has

> > such sensitive organs.

> >

> > As a side note, her rheumy said to me that she is not sure if

Caroline was

> > diagnosed correctly in the beginning and that she has always

suspected

> that

> > she was actually systemic and not poly. I didn't know how to

take that,

> but

> > she said that nothing would have changed in her treatment with

either

> > diagnosis.

> >

> > Lastly, we talked about Remicade. We are approaching the one

year point on

> > Prednisone and Pred Forte drops. That is our rheumy's max for

these drugs.

> > She says she needs to be completely off both by the one year mark

> (January)

> > and that we need to find something to supplement it.

Cyclosporine might

> > work, but she's not confident it will. She also doesn't think

that Enbrel

> > will be enough without the prednisone, so we are left with

Remiciade

> > infusions. The problem is she has never given them to children

Caroline's

> > age and she isn't sure of how many other rheumy's have tried it.

Does

> anyone

> > have any thoughts or history with Remicade on a three year or

less??

> > Caroline will be three in January so I think that is when we

would start

> > it...

> >

> > Thanks everyone!

> >

> > Alia and Caroline, age 2, poly and uveitis

> >

> >

> >

> >

> >

[Guest guest]

Helen - We are celebrating that also! I can't believe how excited we get

over the little things! Her eyes are a problem. I know there are worse

things out there, but when they mentioned cataracts and eye surgery my heart

started pounding. Hopefully, we won't get to that point!

We can't wait for JAM either. I have that picture of and Caroline

at Jam in her room. If Nick wants another bear let us know. Alan is doing

the JAM brochure for the Arthritis Foundation and they offer him a bear

every time he goes in to meet with them!

Thanks for the props about being a good mommy! I hope we will be able to

make the right choice. Alan couldn't make the appointment yesterday and our

rheumy told me to have Alan call her to get all the details since it's a lot

to remember. I just love her!!

I hope Nick is feeling better. How are the hives today?? Does he feel any

better???

Alia and Caroline, age 2, poly and uveitis

Re: Remicade

-OOO a normal sed rate.. Im so glad the enbrel seems to be

working wonders for her joints. I am sad about her continued

problems with her eyes, poor baby.

I have no idea about either drug, but i know you will make the right

decision for Miss C... you are an awesome mommy!

hugs Helen and (7,systemic)

p.s Nick is already talking about the JAM in March.. im going to put

a team together for him this year I think. He wanted to know if he

will get another bear in a different color )) he just loves that

bear to pieces. its no longer white and has had to be reparied, but

it is well loved.

-- In , " Pranke, Alia " <Alia.Pranke@t...>

wrote:

> We went and saw Caroline's rheumy yesterday. It was a really great

> appointment! Yeah! All her joints look amazing. Also, for the

first time in

> a year her sed rate is NORMAL!!! She has determined that the

Enbrel is

> obviously working for all her joints. Unfortunately, it is doing

nothing for

> her eyes. We are going to try cyclosporine, but are hesitant about

the

> success of it. We are also unsure if Caroline can tolerate it

since she has

> such sensitive organs.

>

> As a side note, her rheumy said to me that she is not sure if

Caroline was

> diagnosed correctly in the beginning and that she has always

suspected that

> she was actually systemic and not poly. I didn't know how to take

that, but

> she said that nothing would have changed in her treatment with

either

> diagnosis.

>

> Lastly, we talked about Remicade. We are approaching the one year

point on

> Prednisone and Pred Forte drops. That is our rheumy's max for

these drugs.

> She says she needs to be completely off both by the one year mark

(January)

> and that we need to find something to supplement it. Cyclosporine

might

> work, but she's not confident it will. She also doesn't think that

Enbrel

> will be enough without the prednisone, so we are left with

Remiciade

> infusions. The problem is she has never given them to children

Caroline's

> age and she isn't sure of how many other rheumy's have tried it.

Does anyone

> have any thoughts or history with Remicade on a three year or

less??

> Caroline will be three in January so I think that is when we would

start

> it...

>

> Thanks everyone!

>

> Alia and Caroline, age 2, poly and uveitis

[Guest guest]

--Is the bear the same one from last year or did they come out with

a new one.. we have 2 of last years.. One Nick gave to daddy and the

other is his well loved one. He sleeps with it everynight, it

watches TV with him, it comes to all his doc appts. hes very proud

of his bear.

yeah on Alan doing the brouchure on the JAM..>> ill get all the

scoop about it ahead of time from you guys. Just remember this time,

we need to go to the closing!! LOL

Hugs Helen and (7,systemic)

- In , " Pranke, Alia " <Alia.Pranke@t...>

wrote:

> Helen - We are celebrating that also! I can't believe how excited

we get

> over the little things! Her eyes are a problem. I know there are

worse

> things out there, but when they mentioned cataracts and eye

surgery my heart

> started pounding. Hopefully, we won't get to that point!

>

> We can't wait for JAM either. I have that picture of and

Caroline

> at Jam in her room. If Nick wants another bear let us know. Alan

is doing

> the JAM brochure for the Arthritis Foundation and they offer him a

bear

> every time he goes in to meet with them!

>

> Thanks for the props about being a good mommy! I hope we will be

able to

> make the right choice. Alan couldn't make the appointment

yesterday and our

> rheumy told me to have Alan call her to get all the details since

it's a lot

> to remember. I just love her!!

>

> I hope Nick is feeling better. How are the hives today?? Does he

feel any

> better???

>

> Alia and Caroline, age 2, poly and uveitis

>

> Re: Remicade

>

>

>

> -OOO a normal sed rate.. Im so glad the enbrel seems to be

> working wonders for her joints. I am sad about her continued

> problems with her eyes, poor baby.

>

> I have no idea about either drug, but i know you will make the

right

> decision for Miss C... you are an awesome mommy!

>

> hugs Helen and (7,systemic)

>

> p.s Nick is already talking about the JAM in March.. im going to

put

> a team together for him this year I think. He wanted to know if he

> will get another bear in a different color )) he just loves that

> bear to pieces. its no longer white and has had to be reparied,

but

> it is well loved.

>

> -- In , " Pranke, Alia " <Alia.Pranke@t...>

> wrote:

> > We went and saw Caroline's rheumy yesterday. It was a really

great

> > appointment! Yeah! All her joints look amazing. Also, for the

> first time in

> > a year her sed rate is NORMAL!!! She has determined that the

> Enbrel is

> > obviously working for all her joints. Unfortunately, it is doing

> nothing for

> > her eyes. We are going to try cyclosporine, but are hesitant

about

> the

> > success of it. We are also unsure if Caroline can tolerate it

> since she has

> > such sensitive organs.

> >

> > As a side note, her rheumy said to me that she is not sure if

> Caroline was

> > diagnosed correctly in the beginning and that she has always

> suspected that

> > she was actually systemic and not poly. I didn't know how to

take

> that, but

> > she said that nothing would have changed in her treatment with

> either

> > diagnosis.

> >

> > Lastly, we talked about Remicade. We are approaching the one

year

> point on

> > Prednisone and Pred Forte drops. That is our rheumy's max for

> these drugs.

> > She says she needs to be completely off both by the one year

mark

> (January)

> > and that we need to find something to supplement it.

Cyclosporine

> might

> > work, but she's not confident it will. She also doesn't think

that

> Enbrel

> > will be enough without the prednisone, so we are left with

> Remiciade

> > infusions. The problem is she has never given them to children

> Caroline's

> > age and she isn't sure of how many other rheumy's have tried it.

> Does anyone

> > have any thoughts or history with Remicade on a three year or

> less??

> > Caroline will be three in January so I think that is when we

would

> start

> > it...

> >

> > Thanks everyone!

> >

> > Alia and Caroline, age 2, poly and uveitis

>

>

>

>

>

>

[Guest guest]

Alia:

I would recommend that your rheumy contact CARRA or even Cincinnati

Children's and confer with the rheumatologists there. They are doing so

much research there on juvenile arthritis and perhaps would be able to

offer their expertise. Cincinnati Children's number is 1800 344 2462

(main number ) and ask for rheumatology.

Best wishes!

and Rob 15 Spondy

On Tue, 9 Nov 2004 08:43:39 -0600 " Pranke, Alia "

<Alia.Pranke@...> writes:

We went and saw Caroline's rheumy yesterday. It was a really great

appointment! Yeah! All her joints look amazing. Also, for the first time

in

a year her sed rate is NORMAL!!! She has determined that the Enbrel is

obviously working for all her joints. Unfortunately, it is doing nothing

for

her eyes. We are going to try cyclosporine, but are hesitant about the

success of it. We are also unsure if Caroline can tolerate it since she

has

such sensitive organs.

As a side note, her rheumy said to me that she is not sure if Caroline

was

diagnosed correctly in the beginning and that she has always suspected

that

she was actually systemic and not poly. I didn't know how to take that,

but

she said that nothing would have changed in her treatment with either

diagnosis.

Lastly, we talked about Remicade. We are approaching the one year point

on

Prednisone and Pred Forte drops. That is our rheumy's max for these

drugs.

She says she needs to be completely off both by the one year mark

(January)

and that we need to find something to supplement it. Cyclosporine might

work, but she's not confident it will. She also doesn't think that Enbrel

will be enough without the prednisone, so we are left with Remiciade

infusions. The problem is she has never given them to children Caroline's

age and she isn't sure of how many other rheumy's have tried it. Does

anyone

have any thoughts or history with Remicade on a three year or less??

Caroline will be three in January so I think that is when we would start

it...

Thanks everyone!

Alia and Caroline, age 2, poly and uveitis

[Guest guest]

n,

We also continue the Enbrel if is fever free. Last year at about this

time started a 7 month battle with a sinus infection. We had to

carefully weigh continuing the Enbrel and decided that as long as her

pediatrician kept a close eye on her we needed to keep giving it. Stopping

for any length of time would have just been too damaging.

I hope n soon feels better.

Liz

Re: Remicade

Alia, If your child had systemic and not poly, you would know it. Systemic

is so complicated, and these kids are so sick with it-you would know it.

As for an update on n- she has had a tough year. Last week she caught

my cold, and she has been to the doctor twice now for it. She has had it

for 12 days and just isn't getting any better. Whatever the relation to her

arthritis, I don't know, but the rash is back with the hives. She had been

rash free since starting enbrel. The doctor finally put her on antibiotics

and we are to continue with the enbrel, but I swear-it seems like everytime

I give her the enbrel we take five steps back with the cold. Her wrists

that were injected in Sept. are acting up again. Her right wrist is

starting to turn outward again. She was crying Sunday night because she

couldn't walk because of pain in her foot. The arthritis is now in her

foot, knee, hip , shoulder, elbow and fingers. All of this has come with

this cold that gets no better. She is still sleeping now, but if she is

still bad when she wakes up, it will be back to the doctor. My gut tells me

that her immune system is just breaking down. The rheumy says that if there

is no fever, that we are to go ahead with the enbrel. Does anyone have

their two cents to add to this? Thanks, (n, 15, systemic)

Remicade

>

> We went and saw Caroline's rheumy yesterday. It was a really great

> appointment! Yeah! All her joints look amazing. Also, for the first time

in

> a year her sed rate is NORMAL!!! She has determined that the Enbrel is

> obviously working for all her joints. Unfortunately, it is doing nothing

for

> her eyes. We are going to try cyclosporine, but are hesitant about the

> success of it. We are also unsure if Caroline can tolerate it since she

has

> such sensitive organs.

>

> As a side note, her rheumy said to me that she is not sure if Caroline was

> diagnosed correctly in the beginning and that she has always suspected

that

> she was actually systemic and not poly. I didn't know how to take that,

but

> she said that nothing would have changed in her treatment with either

> diagnosis.

>

> Lastly, we talked about Remicade. We are approaching the one year point on

> Prednisone and Pred Forte drops. That is our rheumy's max for these drugs.

> She says she needs to be completely off both by the one year mark

(January)

> and that we need to find something to supplement it. Cyclosporine might

> work, but she's not confident it will. She also doesn't think that Enbrel

> will be enough without the prednisone, so we are left with Remiciade

> infusions. The problem is she has never given them to children Caroline's

> age and she isn't sure of how many other rheumy's have tried it. Does

anyone

> have any thoughts or history with Remicade on a three year or less??

> Caroline will be three in January so I think that is when we would start

> it...

>

> Thanks everyone!

>

> Alia and Caroline, age 2, poly and uveitis

>

>

>

>

>

[Guest guest]

Hi Alia,

Do call Cincy or have Carolines rheumy call them.

Dr.Lovell is the one in charge of the studies and I know they are doing one

on Remicade.His office number is 1-513-636-8071.This is his actual number and

about 4:30 -5:00 eastern time you will most likely find him in there.I don't

think he ever goes home because I have called him as late as 6:00.

Hugs

Becki and 6 systemic

[Guest guest]

Hi Alia,

My daughter, Sammy, started Remicade for her uveitis when she was 3 1/2 (a

few months before she turned 4). It worked GREAT for her uveitis which has

been a very aggressive and stubborn case that did not respond to methotrexate

or Cellcept. After being on Remicade for a year she developed an allergy to

it (not uncommon as it contains non-human components) and we had to switch to

Humira. That was this past June and she's been doing great on the Humira as

well. Until she developed the allergy to the Remicade (after a year of

infusions every 4 weeks), she had no problems at all with it. Please send me

an

email if you have any additional questions. I hope you can find something to

help Caroline soon. The uveitis can be really scary stuff.

--Lori (Sammy, 5, pauci/uveitis)

[Guest guest]

Hi Alia,

So your rheumy doesn't even want to try to taper the pred while on

Enbrel? Or you've already tried and can't do it (I can't remember).

Anyway, there's a local 4 year old here that was on Remicade for a

while, maybe 6 months. It wasn't doing the trick. She also has

Crohn's, and I don't know whether it was the GI or the rheumy who

put her on Remicade. (This little girl is now not on any meds,

growing, eating, and takes a 2-3 times daily nutritional shake made

by a company called Reliv. Her parents are now distributors of the

stuff and are making amazing claims and sharing amazing claims from

other distributors. That's why she's not on any meds at this time.)

I hope you come to some good treatment choices soon and Caroline's

eyes get better too.

Stacia and Hunter 8 systemic, iritis

[Guest guest]

,

I'm sooo sorry n is flaring again. I thought I just recently

heard how well she was doing on Enbrel. UGH this nasty beast. I'm

sure Becki or someone will chime in with the Enbrel advice.

Stacia and Hunter 8 systemic, iritis

[Guest guest]

My insurance pays for most of my Remicade bill, but I understand that there are

patient assistance programs for those who don't get help from an insurance

company. I have been on Methotrexate for a while now, it really isn't doing

much, but I understand it helps the remicade, so I stay on it. I take Bextra.

I was taking 20 mg twice a day and it was helping out quite a bit, but my

insurance will only pay for 10 mg one time a day, and my rheumy supplements my

supply with samples. The only thing that has seemed to make a difference so far

is the Remicade. I have been on Vioxx, Naproxen, and Ibuprophen also. Hope

that helps. You can go to http://www.remicade.com and get some more info.

Semalee

[ ] Remicade

In a message dated 11/5/04 9:20:38 AM, Semalee@... writes:

>

>

I noticed your reference toi Remicade, Semalee. I have heard that it is as

expensive as $1,500 a month. There is no way I could afford that and not

loose my house. My question to you: is the drug that costly, and is there

anything else that you have taken that has helped?

Thank you, Polly from Ohio

[Guest guest]

i have only been on methotrexate and now that my live is not so good... i had to

stop that... does remicade affect the liver??? and vioxx did absolutely nothing

for me... PREDNISONE is the only thing that took the pain away for me! guess

you can not stay on that for a long time! and besides, i would become about 600

pounds if i stayed on that too long.. ha ha ha hah ah a

rae

[ ] Remicade

In a message dated 11/5/04 9:20:38 AM, Semalee@... writes:

>

>

I noticed your reference toi Remicade, Semalee. I have heard that it is as

expensive as $1,500 a month. There is no way I could afford that and not

loose my house. My question to you: is the drug that costly, and is

there

anything else that you have taken that has helped?

Thank you, Polly from Ohio

[Guest guest]

In a message dated 11/11/04 10:33:16 AM, Raes_Yorkies@... writes:

> PREDNISONE is the only thing that took the pain away from me.

>

Me too! I looked at the side effects when I got my first Rx and none of

them were as bad as how I feel when I don't take it. I started out at 60 mgs

and now am down to 25. If I go below that things start to really hurt.

[Guest guest]

Hey Stacia. We have tried to taper it a few times and each time her eyes

have gotten out of control. The non taper of the Prednisone comes mostly

from her Ophthalmologist, but her Rheumatologist agrees with him. She

doesn't want to taper it, she wants to stop it completely and replace it

with something else. I am not sure if Caroline can handle that or not??

My parents swear by the Reliv stuff too. Their cabinets are stocked full of

it. It has helped my brother who has severe allergies and asthmas some, but

he's still on a load of medications. We haven't tried it yet, but maybe one

day.

Thanks so much!

Alia and Caroline, age 2, poly and uveitis

Re: Remicade

Hi Alia,

So your rheumy doesn't even want to try to taper the pred while on

Enbrel? Or you've already tried and can't do it (I can't remember).

Anyway, there's a local 4 year old here that was on Remicade for a

while, maybe 6 months. It wasn't doing the trick. She also has

Crohn's, and I don't know whether it was the GI or the rheumy who

put her on Remicade. (This little girl is now not on any meds,

growing, eating, and takes a 2-3 times daily nutritional shake made

by a company called Reliv. Her parents are now distributors of the

stuff and are making amazing claims and sharing amazing claims from

other distributors. That's why she's not on any meds at this time.)

I hope you come to some good treatment choices soon and Caroline's

eyes get better too.

Stacia and Hunter 8 systemic, iritis

[Guest guest]

Althea - Your experience with Remicade sounds very much like mine. I read with

interest the article the other day that says TNF s help fatigue. I am so tired

for the day or two after my infusion- that has not been my experience. I have

also been on Remicade for two years (with MTX - although I am not fond of taking

it either).It has not been a miracle for me - but has helped keep my fingers,

hands, wrists and shoulders better.

Hugs,

-------------- Original message ----------------------

From: " blueroses11 " <bluerose11@...>

>

>

> I have been on Remicade for 2 years now. My insurance pays for all

> but my co-pay but it is quite expensive if you don't have

> insurance. They do not have a plan like Humira for people who don't

> have insurance as yet.

>

> I take MTX with it but...

>

> My doctor told me " Remicade works by itself but the FDA will only

> allow a person to be on it if they are on MTX with it "

>

> Now, MTX is the drug that CAN affect your liver and you need to be

> tested every 60 days to make sure your levels are staying constant

> or below the danger level.

>

> I don't take my MTX every week. I didn't take it at one time for

> almost 8 months. During that time, I ached terribly and talked with

> my doctor about it. I am supposed to take my MTX once a week now

> but still find myself forgetting it but when I get seriously achey I

> remember that I haven't taken it.

>

> The Remicade surrounds the cells and does not let them form the bad

> RA cells so that you " hopefully " won't develop any crippling. Since

> starting it, my joints in everything but my feet have been fine. My

> feet have developed metatarsil something or other and I am scheduled

> to see a podiatrist for them.

>

> The MTX takes care of the inflammation that causes you to feel achey

> and sore. For me, sometimes it works and sometimes it doesn't. It

> does help and I am very grateful for it but sometimes even though I

> take it religiously it doesn't help at all.

>

> Remicade does have different side effects though that you may

> suffer...for me I am extremely tired after the infusion and will

> sleep more during the next 48 hours quite a bit. One of people that

> has there infusion the same day I do has to have a shot of benedryl

> before having his infusion. He shook terribly one day for quite a

> while but hasn't had any problems since. Some people get headaches

> but they are supposedly go away after a day or two.

>

> I know that I have a chance to prolong my time without any crippling

> deformities if I stay on it - although it doesn't completely help me.

> I wish anyone good luck who has this crippling disease and is able

> to slow it down in any way.

>

> God bless,

> Althea

>

>

>

>

>

>

>

[Guest guest]

In a message dated 12/6/2004 8:37:48 AM Central Standard Time,

emsnooks@... writes:

http://www.marshallprotocol.com/forum27/

Hi Ethel and group

I hope you are doing well. I haven't posted in awhile so here goes...

I was taking Remicade for about 6months until the info came out about

lymphoma, which incidentally, my doc never mentioned. I am taking Enbrel, but

am

very anxious to stop it.

I have now had 6 surgeries on my eyes because of Uveitis. I am at a

crossroads again...

Two things I am considering but can't do both due to cost . Either have 3

mercury amalgams removed and detoxed or go see Dr. Sentef. I have an app. with

him next week but don't have a peace about what direction to take. I had

thought that I might have IBD

but that doesn't seem to be the case. Suggestions are appreciated!

susan conaway

Reactive Arthritis for 30 years. AP 15 years

[Guest guest]

.... I would definitely see Sentef. I have a whole mouthful of

mercury fillings and they have never bothered me. Sentef got me into remission

in

spite of them. Really do not know if the mercury is bad for everyone. The

biggest problem is when they drill them out and major mercury is released into

vapor. Most dentists do not have any proper way of keeping the vapor out of

your mouth, so you just get this huge dose of mercury as the drill does its

work. Since going into remission I have had two of my fillings replaced. I

just decided that as the old ones deteriorate I will replace them with the

newer white fillings. It gives the body time to detoxify from the vapor

breathed in, and I just feel in most cases, it is better to do it this way. (I

know

some others would violently disagree with me on this.) My dentist also

feels this way. That only a few people are really sensitive to the old mercury

fillings. Both of my parents still have many silver fillings....Mom is 82 and

in good health and Dad is 89. No problem there. I really feel like in all

things, some people are much more sensitive than others. It is a very real

possibility that after having all the fillings replaced, you would still see

no difference in your RA.

On the good side is after seeing Sentef, there is a real good chance

you will be well on your way to a much healthier future. Just my opinion.

Martha

[Guest guest]

thank you for your response Martha. I will most likely keep that app. with

Sentef

susan