Remicade

[Guest guest]

remicade

hi everyone,

my name is mark and my wife was diagnosed with still's in feb this

year. I'm asking about remicade and if any one has tryed it for

still's and what response you may of had with it. Her doctor wants to

try it but we are moveing very slow and not for sure about it. Thanks

Bob for answering my email. I tryed to use the chat room last night

and did'nt seem to be able to get to work for me. please resoned back

with remicade in subject line. thanks for your help and may God give

you a blessed day and pain free.

mark

[Guest guest]

Dear Mark -

Sorry about your wife's diagnosis, but glad you found this group. Also glad

that her doctor wants to treat her Still's aggressively with a disease

modifiying drug. Remicade and Enbrel (which is currently in short supply and

not allowing new prescriptions) have been found to work not just on the

symptoms of the disease but also have an effect on controling the damage to

joints that often comes with Stills.

I was on Remicade for a couple months, but my insurance coverage for it was

limited and I could not afford it. It did help. I was on enbrel for several

years and found it very useful also. Because of the shortage and difficulty

in getting the enbrel, I have recently switched to a new biologic drug,

Kineret. That seems to be working very well for me, but it may be too soon to

tell, as I've only been on in for 3 weeks. You might want to check with your

wife's doctor about that medication. You can also look it up on the internet.

The website is:

www.kineretrx.com. It is a daily injection, but you can do it at home.

Good luck to both of you.

Marcia

[Guest guest]

Mark, I am sorry about your wife. I have been sick with Still's now for 2 years,

8 months. I started Remicade back in December of last year. I just got my last

IV this Thursday. I would have to say that I love this drug. I am doing things I

have not been able to do since I got sick. I noticed a difference by the second

IV. It was not taking as long for me to get moving in the morning. I was getting

around the day so much better. I still struggle do get me wrong, I am not at all

cured, but I feel like I am almost me again. My normal dose was not lasting me

the 8 weeks between IV's so my doctor upped my dose and it lasted this time, the

whole 8 weeks. I was so happy. This drug is very expensive but I have coverage

and I will continue to use it until they won't let me anymore. I hope that you

can find relief for your wife soon. I remember that first year and a half a

really hard time. TTFN,

Re: Fw: remicade

Dear Mark -

Sorry about your wife's diagnosis, but glad you found this group. Also glad

that her doctor wants to treat her Still's aggressively with a disease

modifiying drug. Remicade and Enbrel (which is currently in short supply and

not allowing new prescriptions) have been found to work not just on the

symptoms of the disease but also have an effect on controling the damage to

joints that often comes with Stills.

I was on Remicade for a couple months, but my insurance coverage for it was

limited and I could not afford it. It did help. I was on enbrel for several

years and found it very useful also. Because of the shortage and difficulty

in getting the enbrel, I have recently switched to a new biologic drug,

Kineret. That seems to be working very well for me, but it may be too soon to

tell, as I've only been on in for 3 weeks. You might want to check with your

wife's doctor about that medication. You can also look it up on the internet.

The website is:

www.kineretrx.com. It is a daily injection, but you can do it at home.

Good luck to both of you.

Marcia

[Guest guest]

Dear Mark,

Even though I have Rheumatoid Arthritis and not Stills, I too was put on the

Remicade treatment. Before I began the treatment last October, my fingers were

very swollen and I could barely take my rings off. The following month I began

the Remicade treatment and although I wasn't jumping up and down like some I

have heard I did notice that my inflammation and swelling went down. In May I

was suppose to have my Remicade injection after a two month schedule break but I

developed some kind of flu bug which gave me high fevers and joint inflammation

ALL over along with diarrhea so I decided to wait until I was better before I

had the treatment. Since I had gotten better and while I waited for my

treatment to be rescheduled (just this past Wednesday) I notice that I was

getting more and more sore. The inflammation in my hands was getting completely

out of hand and once again found it very difficult to remove my rings. The

tendons in my fingers were getting stretched and I could feel the knot in the

tendon in the palm of my hand. It was terrible and my appointment couldn't come

soon enough! By Friday, two days after my treatment, I was feeling SOOOOO much

better and I could hardly believe how quickly it kicks in. So it is so easy to

see how much a drug is working when you have to stop it and then are able to go

back on it and then you notice exactly how well it is working. My fingers are

all better now and just plain " all around " I feel better although I still have

my aches and pains in other areas but that is due to the already 'damaged'

joints.

Hope this helps you.

Marilyn

mhogg69@...

[Guest guest]

Hello Mark and wife; nice to meet you and hopes for success with any and all

treatments for your wife to feel better soon. I am no help with answers to the

question of Remicaide. I have had Still's for 25 years and at my onset the

Prednisone and another medication were used to put mine into remission. Now

they have many more to try but I don't have any experience with the Remicaide.

You have found the right place for support and understanding. Best wishes,

Pattymelt

remicade

hi everyone,

my name is mark and my wife was diagnosed with still's in feb this

year. I'm asking about remicade and if any one has tryed it for

still's and what response you may of had with it. Her doctor wants to

try it but we are moveing very slow and not for sure about it. Thanks

Bob for answering my email. I tryed to use the chat room last night

and did'nt seem to be able to get to work for me. please resoned back

with remicade in subject line. thanks for your help and may God give

you a blessed day and pain free.

mark

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

[Guest guest]

, Remicade has been approved as a first line drug for Rheumatoid

Arthritis back in Jan of 2001. I have the article if you want it to show

to your insurance company if it will help.

Kim, most drugs have not been FDA approved for Still's. But they dont have

to be we can still use them. There have been some recent studies on enbrel

and remicade use in AOSD. Remicade seems to be having a good outcome in

still's. It has also been studies in pregnant women, which is something

that the makes of enbrel refused to do. So in the future you may see some

RD's allowing pregnant women to continue or to start remicade if their

disease is not under control during the pregnancy.

The new Brent, welcome to the group. here are some links to remicade use

in AOSD

http://www.stillsdisease.org/article_nine.htm

and a good article on still's in general

http://www.stillsdisease.org/article_ten.htm

[Guest guest]

Jen

If you could give me the information I will take it with me to my next

appointment 7/16/02. I will also call my insurance company myself then fax the

info to them. I had blood work recently, I got the results from the rhuemy in

the mail ( everything ok ) but he noted that he was still working on the

insurance company. Wonder if there is something else going on? Hmmmm

Thanks

Don't Sweat The Small Stuff !!!!!!!!

rjones202@...

Re: remicade

, Remicade has been approved as a first line drug for Rheumatoid

Arthritis back in Jan of 2001. I have the article if you want it to show

to your insurance company if it will help.

Kim, most drugs have not been FDA approved for Still's. But they dont have

to be we can still use them. There have been some recent studies on enbrel

and remicade use in AOSD. Remicade seems to be having a good outcome in

still's. It has also been studies in pregnant women, which is something

that the makes of enbrel refused to do. So in the future you may see some

RD's allowing pregnant women to continue or to start remicade if their

disease is not under control during the pregnancy.

The new Brent, welcome to the group. here are some links to remicade use

in AOSD

http://www.stillsdisease.org/article_nine.htm

and a good article on still's in general

http://www.stillsdisease.org/article_ten.htm

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

[Guest guest]

Hi, . I " think " Remicade may be approved for JRA. You might want to

check on this, and possibly use this angle to get approval.

Some insurance companies require that you fail all other meds, particularly

Methotrexate, before they will allow (pay for) Remicade therapy. Mine did.

-Brent

REMICADE

My rhuemy and pcp said remicade is not FDA approved for use as an arthritis

med. Remicade used for arthritis is considered a secondary use and the

insurance wont pay for its use. But my rhuemy is arguing with my insurance

company for 3 months now so I can get it paid for. So I wait!

Don't Sweat The Small Stuff !!!!!!!!

rjones202@...

[Guest guest]

Remicade is not approved for use in children, although several (including my

own) whose parents utilize the JRA site are on Remicade. Most of these

children are systemic (Stills).

Christy (Abbie, 12 systemic)

[Guest guest]

I had to go through this arguing (or rather my rheumy did) for Enbrel. Once

he told them that after a year of treatment Enbrel had failed, they didn't

seem to have a problem with paying for Remicade. I think - at least with my

insurance - that once they have started paying the really big $$$ for

treatment, it is less of a problem switching between the expensive drugs.

Stay Healthy

[Guest guest]

Thank you Jen for the great information. I think I am most worried about

insurance covering Remicade...however, they have never denied me medication

before so I may be worried about nothing. I will use the articles if it becomes

an issue and I'm sure they will help. I will call them today to see what they

say. I know the doctor I am going to see does not care for Enbrel and would

rather use Remicade. I think all doctors have their favorites....for different

reasons.

Again, thank you for the great info.

Love and Hugs, Kim

Jay <gobulldawgs@...> wrote: , Remicade has been

approved as a first line drug for Rheumatoid

Arthritis back in Jan of 2001. I have the article if you want it to show

to your insurance company if it will help.

Kim, most drugs have not been FDA approved for Still's. But they dont have

to be we can still use them. There have been some recent studies on enbrel

and remicade use in AOSD. Remicade seems to be having a good outcome in

still's. It has also been studies in pregnant women, which is something

that the makes of enbrel refused to do. So in the future you may see some

RD's allowing pregnant women to continue or to start remicade if their

disease is not under control during the pregnancy.

The new Brent, welcome to the group. here are some links to remicade use

in AOSD

http://www.stillsdisease.org/article_nine.htm

and a good article on still's in general

http://www.stillsdisease.org/article_ten.htm

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

[Guest guest]

Dear Chantelle,

No, I have not be on Remicade, but I wanted to wish you a decent day

tomorrow. I know how frustrating it can be starting something new and being

confused at the same time. Good luck friend and if you are feeling well,

let us know how you made out. Everyone responds so differently to different

things, and hopefully this will work for you. Keeping my fingers crossed.

Love, Sue #2

-- remicade

tomorrow iam starting remicade for the first time..

i have heard such good things about the drug.. but at

the same time iam scared that it will not work for me

and i will be just were i started off.. this med is so

much$$$ for it not to work... and i am also worried

about getting sick on it.. have any of you taken this

drug and if so what kind of side effects did you get

and did it help your still..

worried and excited

chantelle

__________________________________________________

[Guest guest]

Chantelle, I started the drug in December. I am glad that you are starting it

also. I have not felt this " good " since I got this disease. I have not had any

side effects, unless you consider a sinus infection after all but one infusion a

side effect. They give me Benedril before the infusion so I am so tired ALL day.

They have to really watch your blood pressure. Mine is always so low that they

are in there every 10 minutes but mine is normally low. For me it takes about 3

and a half hours from the minute I walk in to the time I walk out. I always take

a book but almost always fall asleep about an hour into it. I can walk out on my

own after. My husband and I have even gone to a store and walked around a bit

after. It does cost so much but it is well worth it. I will never be 100% but

this med has brought me as close to it as I can get. Take care and just have

faith in this med.

remicade

tomorrow iam starting remicade for the first time..

i have heard such good things about the drug.. but at

the same time iam scared that it will not work for me

and i will be just were i started off.. this med is so

much$$$ for it not to work... and i am also worried

about getting sick on it.. have any of you taken this

drug and if so what kind of side effects did you get

and did it help your still..

worried and excited

chantelle

__________________________________________________

[Guest guest]

so now that ive finally realised that remicade is infliximab i can now start

finding out about this proposed drug im to have. there doesnt seem to be much

on the site-can anyone give me a few basic pointers about remicade. i have

too make the decision whether to have it or not.

thanx

vicky

p.s sorry i havent been in touch- i started my new school today and only

moved on saturday -things are hectic and stressful-i hope the dragon doesnt

make an appearance.

[Guest guest]

Hi Graham,

Thankyou for the good luck wish. Im afraid I didnt make it in today-a bit

overwhelmed by it all plus i am really really tired. Which isnt a new

sympton. Im not happy to read that remicade can cause extra tiredness-at this

rate Ill be sleeping 24/7!

Keep in touch

Vicky

16

Uk

[Guest guest]

Good luck with school Vicky, I'll keep my fingers crossed for you.

Graham

West Sussex

UK

At 20:14 28/10/2002, you wrote:

>so now that ive finally realised that remicade is infliximab i can now start

>finding out about this proposed drug im to have. there doesnt seem to be much

>on the site-can anyone give me a few basic pointers about remicade. i have

>too make the decision whether to have it or not.

>thanx

>vicky

>p.s sorry i havent been in touch- i started my new school today and only

>moved on saturday -things are hectic and stressful-i hope the dragon doesnt

>make an appearance.

[Guest guest]

Hi there this is Melt. I'm sorry I didn't read your name. I have no

experience with the newer drugs but I have heard from others that they can

take a while to start affecting the disease. I hope they start working for

you soon. Would you sign your name so we can get to know you better? Good

eve, Melt

Remicade

> Hello All,

> I was wondering if anyone could answer a question about Remicade.

> I had my second treatment of (3 bottles) on the past tuesday and I

> still have not had any releif. How long does this take to work? My

> doctor is not adding methortrexate to it. On top he wants me to

> decrease my pred. I'm barely getting through the day. He gave me

> ultracet (doesn't do a thing). Thanks

>

>

>

[Guest guest]

--HI I have had 4 treatments of remicade with 5 bottles each and no

meth. and it has kicked in a little now. Only had fevers about 5

days in the past month, however my joint pain has increased the last

2 weeks. I get the treatment every 4 weeks so Im due on Tues again.

Im off pred now, exect night prior to treatment I take 20 mg and

morning of I take 20 mg to decrease the side effects.

Hang in there a while

Pat from Ma

-

> I had my second treatment of (3 bottles) on the past tuesday and I

> still have not had any releif. How long does this take to work? My

> doctor is not adding methortrexate to it. On top he wants me to

> decrease my pred. I'm barely getting through the day. He gave me

> ultracet (doesn't do a thing). Thanks

[Guest guest]

> > I had my remicade this morning (took it slow this time over 3 hrs

> to

> > try to prevent headache)

> he didnt want to

> > start it today so he could see if the headache was from remicade

> > before he started the mtx.

>

>

>Greetings,

I too get a headache the 2 or 3 day after remicade. I don't get the

mtx. Does taking the remicade slower reduce the risk of headaches?

The nurse usally gets me in and out in 1 1/2 hours. Is this to soon?

I only get 3 bottles right now.

Thanks for the info.

Judy, Collegeville, PA

>

[Guest guest]

Hi Sue #2,

I've been on remicade since Dec. 2002. My rheumatologist wanted me to take

MTX first and I said no, so he just started me on the remicade (worked around

the insurance co. somehow). At first, he only scheduled me for 3 infusions. I

think his theory was that he wanted to give me something to help me get off

the prednisone, because he doesn't want me on it long term. I noticed that the

remicade really helped with a lot of chronic pain that I was having (nothing

severe, but constant) and it has also helped me to taper down the prednisone.

I couldn't seem to get below 10mg before I started, but now I'm almost down

to 5mg. After the first 3 infusions, he started me back on the remicade - I

think b/c I was still having the fevers and I started having knee problems. And

I'm not sure if the remicade is really helping with my knee. Also, it's

supposed to last 8 weeks after you get the first 3 infusions, but mine hasn't

yet.

Usually mine will last between 5-6 weeks, but then I tell him and he adjusts

my dosage. He says if that doesn't work, we can always schedule the

infusions for shorter time periods - like maybe every 6 weeks instead of 8. I

can

tell when it's wearing off b/c the fevers start coming back more freqeuntly,

along with pain and swelling in joints that are normally okay after the

infusion.

I hope all this info. helps. Good luck! If you need more info., please let

me know.

Buffalo, NY

[Guest guest]

Hi Sue #2,

I've been on remicade since Dec. 2002. My rheumatologist wanted me to take

MTX first and I said no, so he just started me on the remicade (worked around

the insurance co. somehow). At first, he only scheduled me for 3 infusions. I

think his theory was that he wanted to give me something to help me get off

the prednisone, because he doesn't want me on it long term. I noticed that the

remicade really helped with a lot of chronic pain that I was having (nothing

severe, but constant) and it has also helped me to taper down the prednisone.

I couldn't seem to get below 10mg before I started, but now I'm almost down

to 5mg. After the first 3 infusions, he started me back on the remicade - I

think b/c I was still having the fevers and I started having knee problems. And

I'm not sure if the remicade is really helping with my knee. Also, it's

supposed to last 8 weeks after you get the first 3 infusions, but mine hasn't

yet.

Usually mine will last between 5-6 weeks, but then I tell him and he adjusts

my dosage. He says if that doesn't work, we can always schedule the

infusions for shorter time periods - like maybe every 6 weeks instead of 8. I

can

tell when it's wearing off b/c the fevers start coming back more freqeuntly,

along with pain and swelling in joints that are normally okay after the

infusion.

I hope all this info. helps. Good luck! If you need more info., please let

me know.

Buffalo, NY

[Guest guest]

Lea

 some have done well with remicade. my self I did not . I had a hard time one it

but stayed with it for a few months and in the end had to stop it before it

stopped me . yes I had a bad time with it and was in and out of the hospital

during my time using it. we do not know if it was stills or if it was the

remacade all we know is I went into a very bad tail spin for a long time . I

would do a infusen or two be fine and then the next hit the skids . now I do

okay on MTX not great but okay. I am sure others will chime in or I hope so but

like any thing with this stills is so different with each of us and so the same

thing with any meds . in the end what did not work for one may end up working

for you so no matter what any one says you still have to always keep that in

mind 

 good luck to you both and hugs

 

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 

 Stills ; An illness I know to well!

To learn about Stills  http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

 

In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

 

A nation can survive its fools and even the ambitious. But it cannot survive

treason from within.

                                                     -- Cicero

[Guest guest]

Hi Lea,

I was having a minor flare with elevated labs and symptoms a couple of years

ago and my doctor put me on Remicade and MTX for 9 months. I didn't notice

any miraculous life altering changes but it did put my labs back to normal

and improve my symptoms so I consider it was a success. I hope this helps

and that it will help your daughter as well.

Regards,

_____

On Behalf Of Lea Howell

Subject: Remicade

Have any of you out there had good success with Remicade.

Thanks for your help.

Lea

____________________________________________________________

It's never too old to date. Senior Dating. Click Here.

http://thirdpartyoffers.netzero.net/TGL2241/fc/Ioyw6i4vdf9vQZ8YNJ8dWuJ1TX3jzrh0s\

RrDxeHTAjJUWzRtObYy7c/

[Guest guest]

Hi Lea,

I was having a minor flare with elevated labs and symptoms a couple of years

ago and my doctor put me on Remicade and MTX for 9 months. I didn't notice

any miraculous life altering changes but it did put my labs back to normal

and improve my symptoms so I consider it was a success. I hope this helps

and that it will help your daughter as well.

Regards,

_____

On Behalf Of Lea Howell

Subject: Remicade

Have any of you out there had good success with Remicade.

Thanks for your help.

Lea

____________________________________________________________

It's never too old to date. Senior Dating. Click Here.

http://thirdpartyoffers.netzero.net/TGL2241/fc/Ioyw6i4vdf9vQZ8YNJ8dWuJ1TX3jzrh0s\

RrDxeHTAjJUWzRtObYy7c/

[Guest guest]

,

 

thank you. I had read that she should take MTX with it but Dr. Cush is using

Arava instead. I guess it is an older substitute for MTX.  He had already added

that to the mix a week ago and had notice an improvement. How long does the

infusion take. She will be in Austin and I live in Dallas.Because she is in

school there her doctor is trying to get this et up through a doctor in Austin.

 My other daughter is coming over from San to be with her but I didn't

know whether I should go down too. She thinks she will be fine with her sister.

 

I guess we never quite being mothers. Thank Heavens.

 

Lea

Subject: RE: Remicade

To: Stillsdisease

Date: Friday, November 7, 2008, 9:51 PM

Hi Lea,

I was having a minor flare with elevated labs and symptoms a couple of years

ago and my doctor put me on Remicade and MTX for 9 months. I didn't notice

any miraculous life altering changes but it did put my labs back to normal

and improve my symptoms so I consider it was a success. I hope this helps

and that it will help your daughter as well.

Regards,

_____

On Behalf Of Lea Howell

Subject: Remicade

Have any of you out there had good success with Remicade.

Thanks for your help.

Lea

____________ _________ _________ _________ _________ _________ _

It's never too old to date. Senior Dating. Click Here.

http://thirdpartyof fers.netzero. net/TGL2241/ fc/Ioyw6i4vdf9vQ Z8YNJ8dWuJ1TX3jz

rh0sRrDxeHTAjJUW zRtObYy7c/