remicade

[Guest guest]

Dear Mark,

Thanks for the info. I know that joint damage is such a concern for all of

us. It will be interesting to follow the literature on Remicade.

[Guest guest]

Glenda,

From what I recall reading, I believe they are giving the infusions

approximately every 8 weeks for RA, taking 2 to 3 hours per infusion. I

don't recall seeing anything for RA where they said you only needed a

certain number of treatments, like they do for Crohn's. From what I can

see, you have to keep getting it every 8 weeks and it also sounds like

you have to take metho along with the Remicade, at least, that's what

was done during the trials.

a Peden

glenda j Stangel wrote:

>

> I can't seem to get information on Remicade for RA and how

> long or many infusions it takes to bring cure/remission.

> Does anyone know?

>

>

[Guest guest]

Glenda,

I totally understand why you want to check Remicade out thoroughly. I

also find it to be of interest and agree with you that it's important to

get as much info as possible before deciding to be a guinea pig. My

main hesitation with Remicade at this point is that I'm not willing to

take metho in order to take Remicade and there doesn't seem to be any

data on taking the Remicade alone for RA. I don't even know if you can

get it without being on metho. If you find any info or decide to try it

yourself, please make sure you fill us all in. As much as I believe in

the AP, I still think it's important to check out new treatments as

there's always a chance of something else proving to be beneficial

without huge side effects. If such a thing comes along, at least it

might provide some relief while the AP does its work.

Hugs,

a Peden

glenda j Stangel wrote:

> a, Bev and Group: The reason I have been so persistent with this

> Remicade issue is that though it seems as though Remicade is the

> answer to our prayers for all of our auto-immune diseases, the Crohn's

> information that I have indicates that patients in trial studies who

> were on

> immunosuppressant therapies had a significantly less chance of

> developing infusion related reactions. I am sure that is why the

> Remicade/ RA

> info presented thus far indicates that patients were on methotrexate.

> HOW MANY OF US ARE READY TO GO BACK ON MTX particularly if we

> have been doing well on the AP?...

>

[Guest guest]

Check out PUVA at corixa (corixa.com). This shows a LOT more hope...

and its only heat killed microbes!

-Mike-

Re: rheumatic Remicade

From: a Peden <paula.peden@...>

Glenda,

I totally understand why you want to check Remicade out thoroughly. I

also find it to be of interest and agree with you that it's important to

get as much info as possible before deciding to be a guinea pig. My

main hesitation with Remicade at this point is that I'm not willing to

take metho in order to take Remicade and there doesn't seem to be any

data on taking the Remicade alone for RA. I don't even know if you can

get it without being on metho. If you find any info or decide to try it

yourself, please make sure you fill us all in. As much as I believe in

the AP, I still think it's important to check out new treatments as

there's always a chance of something else proving to be beneficial

without huge side effects. If such a thing comes along, at least it

might provide some relief while the AP does its work.

Hugs,

a Peden

glenda j Stangel wrote:

> a, Bev and Group: The reason I have been so persistent with this

> Remicade issue is that though it seems as though Remicade is the

> answer to our prayers for all of our auto-immune diseases, the Crohn's

> information that I have indicates that patients in trial studies who

> were on

> immunosuppressant therapies had a significantly less chance of

> developing infusion related reactions. I am sure that is why the

> Remicade/ RA

> info presented thus far indicates that patients were on methotrexate.

> HOW MANY OF US ARE READY TO GO BACK ON MTX particularly if we

> have been doing well on the AP?...

>

[Guest guest]

Rena,

Thanks for your response, I do see what you mean. I know that both drugs

work in a similar way, but that's the same unless I'm mistaken for a lot of

the NSAIDS isn't it? Yet some people respond better to one over another? With

both drugs being so new I'm not sure how much experience Doctors have with

people having tried both. Have you heard of any reports on this?

[Guest guest]

Hi All! Thanks for your input on the difficult med choices that have

to be made. I still haven't made up my mind about what I will do but

gee, I still have 40 or so hours to go LOL.

As to the MTX, it has for two years made a great deal of difference

in my life. Although I have evolved to the point where I had to quit

college teaching (which I love) I have been able to be able bodied

while on the MTX. For two years it has been part of a regime that

keeps my functioning. I have been bad off enough to know barely

moving with a cane, can't tie shoes or button clothes, and spinal

pain so severe I couldn't do anything but lie flat on my back and not

move. I am NOT at that point right now and the difference I see is

the MTX. So if you are out there wondering about trying MTX, yes, it

really works for many people. By the way, I HAVE read 20 year

studies on MTX. Through these studies Drs. have learned about

injections VS oral, blood work needed and many fewer liver biopsies,

methotrexate once per week -vs- other dosages, etc. I have just " run

the course " of MTX alone and that is also common. Many people go

5,8, 10 years before MTX doesn't do the job for them. I guess my

limit is two years.

Is anyone here on remicade? It began as a Crohn's disease drug but

has been approved for RA. It is generally prescribed to be taken

WITH MTX. Anyone considered it? I would like to hear your thoughts

about it.

Also, those that are on Arava or Enbrel (past or present) did you

also take MTX with those drugs???

thanks for your feedback. LaRita

Thought from LaRita

" If you believe everything you read, better not read "

Japanese Proverb

[Guest guest]

--- LaRita s <Ls@...> wrote:

> Also, those who are on Arava or Enbrel (past or

> present) did you also take MTX with those drugs???

Hi Rita --

I have been on MTX for a little more than two years,

and for a year of that I have been on Enbrel as well.

Of the two I really think MTX has done the most for

me, but who knows? I don't have any interactions

between the two, but everyone is different, of course.

" Breathe! You are alive! "

-- Thich Nhat Hanh

__________________________________________________

[Guest guest]

Hi. After my first infusion of Remicade, my pain stopped within 24 hours!

Note that this is unusual. I had the infusion on Friday, and when I woke up

on Saturday, I was literally dancing around the house (my worst pain and

swelling was in my feet). I am now maintaining on Enbrel.

Good luck!

Ilena

[Guest guest]

Hi,

Last I heard, Remicade still hasn't been approved for pediatric

patients. I haven't heard of any clinical trials involving children,

either. Here's some brief info on it's safety and I've reposted some

older articles from the archives.

Hope this helps a little,

Georgina

Safety of Remicade

Professor f Smolen, from the department of medicine, Rheumatic

Disease Center, University of Vienna, Austria, presented the safety

findings on Remicade in his presentation at EULAR. After one year,

Remicade is generally well tolerated with very few side effects. The

most common side effects include upper respiratory tract infection,

headache, nausea, sinusitis, rash and cough, Dr. Smolen explained.

However, there was no difference in the incidence of serious adverse

events between the Remicade group and the placebo group (17 percent

versus 21 percent) or in serious infections (six percent versus eight

percent). There were no serious infusion reactions in any of the

groups.

Angie Silver wrote:

>

> Just curious if anyone knows anything about the new drug Remicade? Is it

> safe for children??

>

> Ang

[Guest guest]

As an FYI on Remicade... As Robbie is a Methotrexate " non-responder " ,

his doctors were prepared to try Remicade if Enbrel did not work. Also,

as Robbie is pretty much a " needle phobic " , Remicade was also mentioned

as an option because you take it so much less often. This is at the

Children's Hospital in Seattle. It appears some children are using it.

Don't know about the expense, I don't think insurance will pay if not

approved for children. Jana

[Guest guest]

In a message dated 11/01/2000 3:59:48 PM Pacific Standard Time,

imshellrenee@... writes:

> he drug Remicade

I asked 's Dr about this medication. He has heer on Enbrel right now

and said that the medications are basically the same. Remicade does have a

web site at Remicade.com

[Guest guest]

Thanks, I'll check out the website. My mom is supposed to get me some

literature, but the web is much faster! lol Enbrel is basically the same? I

had no clue, but that's interesting to me since I know kids do take Enbrel.

Thanks again,

[Guest guest]

hi michelle, a docs office here is in the process of doing an experiment on

adult RA patients with that drug. a very good friend of mine has

volunteered and gotten 2 treatments already. she said the first one made

her very sick to her stomach, but the 2nd one only gave her a migraine. the

good part was that she said her RA was substantially better and she has

systemic too. she has a pretty good caseof it too, i have known known her

for several years and have seen her where she couldnt even brush her own

hair. cool, huh? maybe, this drug wont be as bad as some of the others,

thanks, brandy

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[Guest guest]

Yes, Remicade is similar to Enbrel. The bonus is that it is given

less often. The dosage decreases over time. Does anyone know

how this works? Thanks, Jana

[Guest guest]

Good Morning Everyone,

I currently see my RD weekly to receive my MTX injection. That means I get about 2 minutes a week with her that often leaves me with more questions.

Yesterday she asked about Psoriasis and when I reminded her that I have no P at all she said 'Oh, thats right. So we can call this sero-negative. That will increase the chance of your HMO approving the Remicade'. So--that 2 minute appt left me with these questions:

What is sero negative?

Does that mean she is changing the diagnosis to RA rather than PA?

If I'm reading the Remicade information correctly I have only a 50% chance of feeling 20% better after 30 weeks. I went to www.remicade.com but they offer no more information about that. I'm going to call their 800# to see if those are the real odds or if I am not understanding something. If you are currently taking the remicade infusions please let me know your response to the drug.

Hoping all are well today,

Jeanne In Idaho

[Guest guest]

Hi Jeanne-

I took Remicade for about a year and loved it. I felt fantastic and had no side effects. It started working extremely quickly. Get your doctor to give it to you.

Sara in Los Angeles

-----Original Message-----From: now4now5@... [mailto:now4now5@...]Sent: Thursday, February 01, 2001 7:05 AM Subject: Re: [ ] RemicadeGood Morning Everyone, I currently see my RD weekly to receive my MTX injection. That means I get about 2 minutes a week with her that often leaves me with more questions. Yesterday she asked about Psoriasis and when I reminded her that I have no P at all she said 'Oh, thats right. So we can call this sero-negative. That will increase the chance of your HMO approving the Remicade'. So--that 2 minute appt left me with these questions: What is sero negative? Does that mean she is changing the diagnosis to RA rather than PA? If I'm reading the Remicade information correctly I have only a 50% chance of feeling 20% better after 30 weeks. I went to www.remicade.com but they offer no more information about that. I'm going to call their 800# to see if those are the real odds or if I am not understanding something. If you are currently taking the remicade infusions please let me know your response to the drug. Hoping all are well today, Jeanne In Idaho

[Guest guest]

Why did you stop taking it? Randy in Va.

RE: [ ] Remicade

Hi Jeanne-

I took Remicade for about a year and loved it. I felt fantastic and had no side effects. It started working extremely quickly. Get your doctor to give it to you.

Sara in Los Angeles

-----Original Message-----From: now4now5@... [mailto:now4now5@...]Sent: Thursday, February 01, 2001 7:05 AM Subject: Re: [ ] RemicadeGood Morning Everyone, I currently see my RD weekly to receive my MTX injection. That means I get about 2 minutes a week with her that often leaves me with more questions. Yesterday she asked about Psoriasis and when I reminded her that I have no P at all she said 'Oh, thats right. So we can call this sero-negative. That will increase the chance of your HMO approving the Remicade'. So--that 2 minute appt left me with these questions: What is sero negative? Does that mean she is changing the diagnosis to RA rather than PA? If I'm reading the Remicade information correctly I have only a 50% chance of feeling 20% better after 30 weeks. I went to www.remicade.com but they offer no more information about that. I'm going to call their 800# to see if those are the real odds or if I am not understanding something. If you are currently taking the remicade infusions please let me know your response to the drug. Hoping all are well today, Jeanne In Idaho

[Guest guest]

In a message dated 2/1/01 7:06:36 PM US Eastern Standard Time,

heather.watson@... writes:

<< was talking to a doctor about Remicade a few weeks ago and he told me that

it costs $12,000 a year. He also commented on the commercials on tv, saying

that the drug has not been fully approved yet. Is it possible he is

confused with some other medication?

>>

Remicade isn't approved for PA yet, it has been for RA for some time

[Guest guest]

I was talking to a doctor about Remicade a few weeks ago and he told me that

it costs $12,000 a year. He also commented on the commercials on tv, saying

that the drug has not been fully approved yet. Is it possible he is

confused with some other medication?

in Canada

[Guest guest]

Jeanne,

I recommend that you go to www.arthritis.about.com and log in to the

arthritis forum. there you can read more about Remicade. To call the

art sero-negative RA gives the doc a chance to get you the medicine

even if you really have PA instead of RA. My doc is now checking off

on the exam notes that I have polyarthritis since he wrote and signed

a letter that he states I have RA. I inject Enbrel.PatB

> Good Morning Everyone,

>

> I currently see my RD weekly to receive my MTX injection. That

means I get

> about 2 minutes a week with her that often leaves me with more

questions.

>

> Yesterday she asked about Psoriasis and when I reminded her that I

have no P

> at all she said 'Oh, thats right. So we can call this sero-

negative. That

> will increase the chance of your HMO approving the Remicade'. So--

that 2

> minute appt left me with these questions:

>

> What is sero negative?

>

> Does that mean she is changing the diagnosis to RA rather than PA?

>

> If I'm reading the Remicade information correctly I have only a 50%

chance of

> feeling 20% better after 30 weeks. I went to www.remicade.com but

they offer

> no more information about that. I'm going to call their 800# to

see if those

> are the real odds or if I am not understanding something. If you

are

> currently taking the remicade infusions please let me know your

response to

> the drug.

>

> Hoping all are well today,

> Jeanne In Idaho

[Guest guest]

In a message dated 02/02/2001 6:00:08 AM Eastern Standard Time,

now4now5@... writes:

<< What is sero negative?

Does that mean she is changing the diagnosis to RA rather than PA?

>>

I'm not on remicade, but I know that insurance companies won't pay for it if

your diagnosis is PA because it's not FDA approved for PA, only RA. I think

your rheumy is happy now because without P, she can now say you have sero

negative RA (your blood tests don't show the RA factor). I doubt that she is

truly changing her diagnosis from RA to PA, but at least she can now " fudge "

it a bit for the insurance company without feeling she is telling a bold face

lie?

[Guest guest]

Since the question of " fully approved " came from Canada, it is

possible that the Canadian system does not have it " fully approved " .

It is interesting to note that there are NO drugs officially

" approved " for PA in the USA!! I believe that not even MTX has that

official approval with the FDA. This is due to the lack of well

funded, double blind studies. PA is treated as RA by default.

Enbrel is currently in full studies for PA and hopes to be the first

official treatment for PA. That's what I understand! I feel very

fortunate that Vioxx and Arava were approved by my insurance company

with just one letter from my rheumy.

PA is considered a " seronegative " disease. Nothing shows up in blood

work. For those that have spinal involvement, PA is a seronegative

spondyloarthapy. What a mouthful :-) La

Thought from LaRita

" Learn as if you were going to live forever. Live as if you

were going to die tomorrow. "

--Anon.

[Guest guest]

Because I'm trying to get pregnant and they have no idea whether it's safe

or not. Believe me, I miss it.

Sara

Re: [ ] Remicade

Why did you stop taking it? Randy in Va.

[Guest guest]

Maybe he means that it hasn't been approved for PA yet (just RA).

RE: [ ] Remicade

I was talking to a doctor about Remicade a few weeks ago and he told me that

it costs $12,000 a year. He also commented on the commercials on tv, saying

that the drug has not been fully approved yet. Is it possible he is

confused with some other medication?

in Canada

[Guest guest]

Hi Jackie,

I'm sorry to hear that your son is having a really hard time right now. Was his

prednisone increased recently, specifically to try to get this flare under

control? I'm asking because that's a very high dose to be using on a long-term

basis. Like n, I can't remember hearing of other children on this list who

have taken remicade. What is your son's age? It's one of the newer meds and I

don't think it's gotten FDA approval for use in treating children yet. Sometimes

there's ways around that though, especially if the doctors feel they're running

out of other options and need to get the arthritis managed quickly. Was your son

a non-responder to Enbrel?

Well, you may hear from others here who have had experience with this med but

until then, I did a quick search and came up with some info on Remicade. I'll

send them in a seperate email, following this one.

Good Luck. And keep us posted on how this goes. I hope yhe'll have some

improvements soon.

Take Care,

Georgina

Remicade

Our son has systemic Jra he has been in a flare for the last

4 weeks. He has had fevers every night up to 103to 104. Has

had joint pain and no energy. He is on 60mg of pred. and mtx

also naprosyn. We went to the Dr on Monday he wants to put

him on Remicade HELP has anyone's child been on this. I don't

know much about it we wondered if it work's well on children.

I hate to see him start something else but if it works that

would be great. Thank You!!!!!

Jackie