Orencia

[Guest guest]

Hi Sophie,

I'm not a kid, or maybe I am but that is a different post. I am

systemic onset. Been on the Orencia ever since it has been out. It did

take awhile for it to start working for me. But have done well on it

every since.

>

> Hi Everyone,

> has a rheumatologist appointment on Thursday, and I think we

> are headed towards trying Orencia.

>

> Does anyone have kids on it? Has it helped? Have there been any side

> effects?

>

> Thanks so much. There isn't a lot out there to read about Orencia.

>

> Sophie

> 's mom, age 8, systemic JRA

>

[Guest guest]

That's great to hear! Gives me some hope that Orencia will help my

daughter because she also has systemic jra.

Do you have any headaches or abdominal pain on Orencia? My daughter

is currently on kineret and has been complaining lately of having

headaches. She also always has abdominal pain but we think that is

caused by the disease.

Thanks for your help.

> >

> > Hi Everyone,

> > has a rheumatologist appointment on Thursday, and I think

we

> > are headed towards trying Orencia.

> >

> > Does anyone have kids on it? Has it helped? Have there been any

side

> > effects?

> >

> > Thanks so much. There isn't a lot out there to read about

Orencia.

> >

> > Sophie

> > 's mom, age 8, systemic JRA

> >

>

[Guest guest]

Hi Liz,

Thanks for responding. It makes me feel better that there are at

least a couple of people on the list that have experience with it. I

am glad to hear it is helping !

Sophie

>

> Sophie,

>

> (16) has been on Orencia since June. So far she has not

experienced

> any problems at all with it and we've even started lowering her

methotrexate

> dose. It's a quick infusion, much nicer in that regard than the

Remicade.

> She no longer has to miss an entire day of school for her infusions.

>

> Liz

>

>

>

> _____

>

> From: [mailto: ] On

Behalf

> Of slevindoski

> Sent: Tuesday, October 21, 2008 8:05 AM

>

> Subject: Orencia

>

>

>

> Hi Everyone,

> has a rheumatologist appointment on Thursday, and I think

we

> are headed towards trying Orencia.

>

> Does anyone have kids on it? Has it helped? Have there been any

side

> effects?

>

> Thanks so much. There isn't a lot out there to read about Orencia.

>

> Sophie

> 's mom, age 8, systemic JRA

>

>

>

>

>

>

[Guest guest]

Holly finally beat you with a surgery !!!! She had a port put in in

July.......but you beat her with orencia she just started that in

july................not working real well yet.........but its only been since

July

n and Holly (14)

Systemic jra since 9/94

**************New MapQuest Local shows what's happening at your destination.

Dining, Movies, Events, News & more. Try it out

(http://local.mapquest.com/?ncid=emlcntnew00000002)

[Guest guest]

Hi

I'm on Orencia, and it took 6 months for it to 'kick in'. I was a slow

responder. Also, make sure she is VERY well hydrated before the infusion. It is

a big molecule, so it can cause nausea and headache afterwards .I learned the

hard way to drink LOTS before I get there for my infusion. I drink about 64

ounces of Gatorade (I prefer Rain, if you are familiar with that). The last

time, I also took tylenol and ranitidine and between all of it, I had a

reaction-free Orencia day. The key is, hydrate hydrate hydrate!

, adult onset RA, mom to Rob, 19, JAS

Re: Orencia

> That's great to hear! Gives me some hope that Orencia will

> help my

> daughter because she also has systemic jra.

>

> Do you have any headaches or abdominal pain on Orencia? My

> daughter

> is currently on kineret and has been complaining lately of

> having

> headaches. She also always has abdominal pain but we think

> that is

> caused by the disease.

>

> Thanks for your help.

>

>

>

>

> > >

> > > Hi Everyone,

> > > has a rheumatologist appointment on Thursday, and I

> think

> we

> > > are headed towards trying Orencia.

> > >

> > > Does anyone have kids on it? Has it helped? Have

> there been any

> side

> > > effects?

> > >

> > > Thanks so much. There isn't a lot out there to read

> about

> Orencia.

> > >

> > > Sophie

> > > 's mom, age 8, systemic JRA

> > >

> >

>

>

>

[Guest guest]

>

> Hi

> I'm on Orencia, and it took 6 months for it to 'kick in'. I was a

slow responder.

Hi ,

It also took about 6 months for it to work for me. And as for being on

it when it was first release. My rhuemy and the place I go for my

infusion uses the 6 month model for all that is on it.

Never had any problems with the Orencia. I only drink lots of fluids

due to the lack of good blood vanes. The IV center I go to, has been

trying to get me to have a Port Cath put in. One day I will give in

just not yet lol.

[Guest guest]

Although I don't have personal experience with Ornecia, I know someone with

SysJRA.... teen.... she has been severely affected by JRA and this drug has

actually enabled her to start walking again, improved her mobility and pain

levels tremendously and she's totally a fan. She said she didn't have any

side effects from it that she couldn't deal with and that it was important

for her to drink tons of fluids and she needed the infusions to go a little

more slowly at first than they had them going. She had a fast positive

response to them.

Issadora

On Tue, Oct 21, 2008 at 6:04 PM, <ajaomom@...> wrote:

> Holly finally beat you with a surgery !!!! She had a port put in in

>

> July.......but you beat her with orencia she just started that in

> july................not working real well yet.........but its only been

> since July

>

> n and Holly (14)

> Systemic jra since 9/94

>

> **************New MapQuest Local shows what's happening at your

> destination.

> Dining, Movies, Events, News & more. Try it out

> (http://local.mapquest.com/?ncid=emlcntnew00000002)

>

>

>

[Guest guest]

Thanks for all your replys. My daughter has never had infusions, so

I wouldn't have thought about the fluids. Thanks for the tips.

Sophie

>

> > Holly finally beat you with a surgery !!!! She had a port

put in in

> >

> > July.......but you beat her with orencia she just started that in

> > july................not working real well yet.........but its

only been

> > since July

> >

> > n and Holly (14)

> > Systemic jra since 9/94

> >

> > **************New MapQuest Local shows what's happening at your

> > destination.

> > Dining, Movies, Events, News & more. Try it out

> > (http://local.mapquest.com/?ncid=emlcntnew00000002)

> >

> >

> >

[Guest guest]

BlueBird and group;

Wow what a great nic. I couldnt think of a thing for my nic. My mind

went blank. So I used my own name. Some people prefer their own names

but on a lot of sites their all taken and you have to add numbers after

them.

Me too, I feel awful. I'm not on Orencia, I am on 2 meds an a

biologic. It must be a flare for me. How long does these flares

last. I ache all over.

I thought you was our friend Melendez at first she uses cap for her

eyes are bad (i think). Did I welcome you Blue Bird. If not welcome.

Unless your a lurker than Welcome back lol. I know to use appostraphes

but I am to lazy so please bear with me lol.

gentle hugs

Clora

***********************************************************

>

> HI;

> I HAVE BEEN ON MANY MEDS. FOR RA; I HAVE BEEN HELPED;

>

> BUT I THINK I CAN FEEL BETTER.

>

> I HAVE BEEN READING ABOUT ARENICA; I AM GOING TO ASK

> MY RHEUMY IF I QUALIFY FOR THIS MED....

>

> THANKS

> BLUE BIRD

>

[Guest guest]

I also had been on many meds for RA. Orencia has worked very well for me. I

think, however, it has not been tested or in use for a long time - it is new in

the market. Perhaps would know. All I know that it has worked for me and

I was in bad shape until starting Orencia.

Good luck and you are all in my prayers.

Joanne

> From: evelynfarmer27 <evelynfarmer27@...>

> Subject: [ ] ORENCIA

>

> Date: Friday, November 7, 2008, 3:21 PM

> HI;

> I HAVE BEEN ON MANY MEDS. FOR RA; I HAVE BEEN HELPED;

>

> BUT I THINK I CAN FEEL BETTER.

>

> I HAVE BEEN READING ABOUT ARENICA; I AM GOING TO ASK

> MY RHEUMY IF I QUALIFY FOR THIS MED....

>

> THANKS

> BLUE BIRD

>

>

> ------------------------------------

>

>

[Guest guest]

I'm on it also and I love it!!

 

Joyce

[Guest guest]

I, too, am on Orencia. I began taking it the last week of July (this

year) and am up for another treatment Wed. At first it was a miracle!

I felt like the old me was back. Now I have relief for abt 2.5 weeks

before the next treatment. It seems like my " feeling funky " period is

getting slowly shorter and shorter.

I see my Rheumy after my treatment and this topic is the first thing

i plan to talk about with him. I do take 7 MTX on Mondays and the MTX

supposedly helps boost the effectiveness of Orencia.

When you start Orencia do NOT miss any treatments. It makes the

medicine work better if you stay on schedule with it.

Dalanne

East Central Illinois

>

>

> > From: evelynfarmer27 <evelynfarmer27@...>

> > Subject: [ ] ORENCIA

> >

> > Date: Friday, November 7, 2008, 3:21 PM

> > HI;

> > I HAVE BEEN ON MANY MEDS. FOR RA; I HAVE BEEN HELPED; BUT I THINK

I CAN FEEL BETTER. I HAVE BEEN READING ABOUT ARENICA; I AM GOING TO

ASK MY RHEUMY IF I QUALIFY FOR THIS MED....

> >

> > THANKS

> > BLUE BIRD

[Guest guest]

Dalanne and group;

I dont take orencia, I take Humira injections I promise I wont miss

any of mine. haaaaaaaaa.

I hurt to much to miss a dose. But thanks for letting us know. I

might miss a heartburn pill but not my arthritis meds.

gentel hugs

clora

****************************************************

>

> I, too, am on Orencia. I began taking it the last week of July

(this

> year) and am up for another treatment Wed. At first it was a

miracle!

> I felt like the old me was back. Now I have relief for abt 2.5

weeks

> before the next treatment. It seems like my " feeling funky " period

is

> getting slowly shorter and shorter.

>

> I see my Rheumy after my treatment and this topic is the first

thing

> i plan to talk about with him. I do take 7 MTX on Mondays and the

MTX

> supposedly helps boost the effectiveness of Orencia.

>

> When you start Orencia do NOT miss any treatments. It makes the

> medicine work better if you stay on schedule with it.

>

> Dalanne

> East Central Illinois

>

[Guest guest]

----- Forwarded Message ----

From: Judy Erdmann <judy.erdmann@...>

jralist

Sent: Monday, May 18, 2009 12:36:23 PM

Subject: Orencia

Hi Everyone! I have been reading all of your posts for a while now. It is so

good to hear about people going through the same things we are! My ten year old

son, , was diagnosed with systemic JRA in 1998. He has been on Enbrel,

Kineret,and Humira.The Enbrel and Kineret worked for awhile but then seemed to

stop working for no reason! (Humira never helped at all)  He has also been on

MTX and steroids since he was 2 1/2. We are trying to get him off steroids but

they are the only thing that seem to make his life bearable!!! They have already

caused AVN in his left hip.He has just started Orencia. I was wondering what

kind of results anyone else is having on it. He only started a month ago and we

haven't seen too much yet.    You all seem like a wonderful group of people and

I have really enjoyed all the information you share. I am not very good at the

computer, but I am getting better! (this is my first post)    Thanks for all the

info and I

look forward to learning from you all!!! Judy/ 's Mom   

[Guest guest]

Hi Judy,

Seems like our kids have been on the same medications. My 8 year old (almost 9)

has had systemic jra for 5 1/2 years and was on Enbrel, then Humira and then

kineret along with MTX. She is now on Arava and Orencia, but still has joint

problems. She recently had her appendix removed, and I believe she had an

infection for quite some time. I am wondering if now that it has been removed,

if she will improve on Orencia.

We have completed the paperwork for thalidomide and will start that soon. I

emailed Dr. Lehman, b/c he seems to have been the one with the most experience

with it, and he said he has many patients on thalidomide. He said if it works,

it works within two weeks. I figure it is worth a shot, but I am a little

worried about it.

Best wishes to you and . Feel free to ask any questions.

Sophie

>

>

>

>

>

> ----- Forwarded Message ----

> From: Judy Erdmann <judy.erdmann@...>

> jralist

> Sent: Monday, May 18, 2009 12:36:23 PM

> Subject: Orencia

>

>

> Hi Everyone! I have been reading all of your posts for a while now. It is so

good to hear about people going through the same things we are! My ten year old

son, , was diagnosed with systemic JRA in 1998. He has been on Enbrel,

Kineret,and Humira.The Enbrel and Kineret worked for awhile but then seemed to

stop working for no reason! (Humira never helped at all)  He has also been on

MTX and steroids since he was 2 1/2. We are trying to get him off steroids but

they are the only thing that seem to make his life bearable!!! They have already

caused AVN in his left hip.He has just started Orencia. I was wondering what

kind of results anyone else is having on it. He only started a month ago and we

haven't seen too much yet.    You all seem like a wonderful group of people and

I have really enjoyed all the information you share. I am not very good at the

computer, but I am getting better! (this is my first post)    Thanks for all the

info and I

> look forward to learning from you all!!! Judy/ 's Mom   

>

>

>

>

>

>

[Guest guest]

Hello Sophie,It sounds like our children have alot in common!I have never heard

of Arava. What is it? I think I have heard of thalidomide.Is it the drug they

used to give pregnant women years ago??? Our doctor mentioned it if the Orencia

doesn't work. I like anything that works FAST.I am also afraid of side

effects. was supposed to be in a study for the drug Actemra but after

reading about some bad side effects and some deaths, I decided it wasn't worth

the risk! Good luck to your daughter and God bless!!!Judy dr

> >

> >

> >

> >

> >

> > ----- Forwarded Message ----

> > From: Judy Erdmann <judy.erdmann@>

> > jralist

> > Sent: Monday, May 18, 2009 12:36:23 PM

> > Subject: Orencia

> >

> >

> > Hi Everyone! I have been reading all of your posts for a while now. It is so

good to hear about people going through the same things we are! My ten year old

son, , was diagnosed with systemic JRA in 1998. He has been on Enbrel,

Kineret,and Humira.The Enbrel and Kineret worked for awhile but then seemed to

stop working for no reason! (Humira never helped at all)  He has also been on

MTX and steroids since he was 2 1/2. We are trying to get him off steroids but

they are the only thing that seem to make his life bearable!!! They have already

caused AVN in his left hip.He has just started Orencia. I was wondering what

kind of results anyone else is having on it. He only started a month ago and we

haven't seen too much yet.    You all seem like a wonderful group of people and

I have really enjoyed all the information you share. I am not very good at the

computer, but I am getting better! (this is my first post)    Thanks for all the

info and I

> > look forward to learning from you all!!! Judy/ 's Mom   

> >

> >

> >

> >

> >

> >

[Guest guest]

Arava is similar to Methotrexate, but usually not as effective. We started

Arava to see if it would help better than Methotexate after my daughter was on

methotrexate for 5 years. My daughter doesn't have the stomach issues that she

had on Methotrexate, so that in itself was a huge improvement.

Thalidomide is the drug they gave pregnant women in the past that caused birth

defects. I am more worried about the peripheral neuropathy that has been

reported. Although the doses they use for systemic jra are much lower than what

they use for cancer.

We will probably start Actemra when it is approved. I will have to do more

reading on the side effects first! I hadn't heard of the deaths.

I hope Orencia works for . Make sure he drinks a lot of fluid the day

before and the day of infusion. When my daughter doesn't drink much she seems

to get a headache from it.

Take care of yourself. This can all be too overwhelming at times!

Sophie

> > >

> > >

> > >

> > >

> > >

> > > ----- Forwarded Message ----

> > > From: Judy Erdmann <judy.erdmann@>

> > > jralist

> > > Sent: Monday, May 18, 2009 12:36:23 PM

> > > Subject: Orencia

> > >

> > >

> > > Hi Everyone! I have been reading all of your posts for a while now. It is

so good to hear about people going through the same things we are! My ten year

old son, , was diagnosed with systemic JRA in 1998. He has been on Enbrel,

Kineret,and Humira.The Enbrel and Kineret worked for awhile but then seemed to

stop working for no reason! (Humira never helped at all)  He has also been on

MTX and steroids since he was 2 1/2. We are trying to get him off steroids but

they are the only thing that seem to make his life bearable!!! They have already

caused AVN in his left hip.He has just started Orencia. I was wondering what

kind of results anyone else is having on it. He only started a month ago and we

haven't seen too much yet.    You all seem like a wonderful group of people and

I have really enjoyed all the information you share. I am not very good at the

computer, but I am getting better! (this is my first post)    Thanks for all the

info and I

> > > look forward to learning from you all!!! Judy/ 's Mom   

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

I have been on Orencia - I think it has been since Jan 2008 (time goes by so

fast anymore and on the pain meds, I lose track of time)...

Orencia has helped me. Before, on Humira, then Remicade, I was unable to barely

get out of bed and was very tired all day long with all joints being hot and

swollen. I was unable to sleep at night because the pain would be unbearable.

On Orencia, the swelling has decreased tremendously. I am able to get up and do

things now. The pain is still there - perhaps (on a scale of 1 to 10 with 10

being the highest) at an average level of 5 to 7 overall - at times being higher

or lower. Before Orencia, my pain level was much greater than 10 - I would say

about 15 to 20. I do take pain medication 24 hours a day, 7 days a week, on an

annual basis; however, this makes life so much more easier and less painful.

I have not had any reaction to Orencia or methotrexate so I am not sure if my

response will be of any help to you.

Wishing you the best...

> From: keptoz <keptoz@...>

> Subject: [ ] Orencia

>

> Date: Tuesday, August 25, 2009, 1:55 PM

> Hi all - I've lost track of just how

> many drugs I've tried, but my Rheumy now wants me to

> consider Orencia. I was on Enbrel & it worked great WHEN

> I could actually take it. I haven't been able to stay on it

> for more than 2 weeks at a time without getting some type of

> infection. So my Dr thinks Orencia will be better with that.

> I always get so nervous when trying a new drug. I haven't

> had experiences so far with side effects & allergic

> reactions. Enbrel seems to be the only drug so far that has

> worked.  Anybody have experience with Orencia? I'm just

> waiting for my insurance to go through, but will probably

> start my 1st dose next month. I've been reading that it

> makes you really tired & nauseous for a day or two &

> with 3 young kids, that worries me. I couldn't tolerate MTX

> at all for that reason. How is it compared to mtx? Thanks so

> much

>

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

Hi, My name is and I'm taking orencia and it seems to be doing the trick

so far.  The first time in a long time that I felt like getting out and doing

things with my children and friends.  Yesterday  was my fourth treatment.  But

after talking with my insurance co.  today I dont know how I'm gonna afford to

stay on it.  I got to make a decision about what to do about the treatment it is

so expensive.  But I do wish u well

 

From: keptoz <keptoz@...>

Subject: [ ] Orencia

Date: Tuesday, August 25, 2009, 2:55 PM

 

Hi all - I've lost track of just how many drugs I've tried, but my Rheumy now

wants me to consider Orencia. I was on Enbrel & it worked great WHEN I could

actually take it. I haven't been able to stay on it for more than 2 weeks at a

time without getting some type of infection. So my Dr thinks Orencia will be

better with that. I always get so nervous when trying a new drug. I haven't had

experiences so far with side effects & allergic reactions. Enbrel seems to be

the only drug so far that has worked. Anybody have experience with Orencia? I'm

just waiting for my insurance to go through, but will probably start my 1st dose

next month. I've been reading that it makes you really tired & nauseous for a

day or two & with 3 young kids, that worries me. I couldn't tolerate MTX at all

for that reason. How is it compared to mtx? Thanks so much

[Guest guest]

Have your talked to your rheumy about the price? Sometimes the doctor can knock

it down. The company that makes orencia also has a sliding scale service for

those who can't afford the medicine.

Good luck!

[ ] Orencia

Date: Tuesday, August 25, 2009, 2:55 PM

Hi all - I've lost track of just how many drugs I've tried, but my Rheumy now

wants me to consider Orencia. I was on Enbrel & it worked great WHEN I could

actually take it. I haven't been able to stay on it for more than 2 weeks at a

time without getting some type of infection. So my Dr thinks Orencia will be

better with that. I always get so nervous when trying a new drug. I haven't had

experiences so far with side effects & allergic reactions. Enbrel seems to be

the only drug so far that has worked. Anybody have experience with Orencia? I'm

just waiting for my insurance to go through, but will probably start my 1st dose

next month. I've been reading that it makes you really tired & nauseous for a

day or two & with 3 young kids, that worries me. I couldn't tolerate MTX at all

for that reason. How is it compared to mtx? Thanks so much

[Guest guest]

,

has been on Orencia for 19 months now, along with a low dose (10 mg) of

methotrexate. Between the two both the psoriasis and the arthritis are currently

well controlled.

Liz

Sent via BlackBerry by AT & T

Orencia

Does anyone have kids on orencia who also have psoriasis? I was wondering how

well orencia works to help with psoriasis. It currently is not approved for

psoriatic arthritis, but it looks like this will be the next step for my son

(provided insurance gets on board, too). His psoriasis is tolerable at the

moment (not great), while his arthritis is not doing well at all.

Thanks,

[Guest guest]

That is such great news! I'm glad she is doing well. Thanks for the update.

We just couldn't find any info on whether or not it helped psoriasis. This

is definitely helpful.

On Mon, Jan 4, 2010 at 1:03 PM, Liz <liz_smith@...> wrote:

>

>

> ,

> has been on Orencia for 19 months now, along with a low dose (10 mg)

> of methotrexate. Between the two both the psoriasis and the arthritis are

> currently well controlled.

> Liz

> Sent via BlackBerry by AT & T

>

>

> Orencia

>

> Does anyone have kids on orencia who also have psoriasis? I was wondering

> how well orencia works to help with psoriasis. It currently is not approved

> for psoriatic arthritis, but it looks like this will be the next step for my

> son (provided insurance gets on board, too). His psoriasis is tolerable at

> the moment (not great), while his arthritis is not doing well at all.

>

> Thanks,

>

>

>

[Guest guest]

how often do you have to do that...

 

~~~~~~~~~~Joy~~~~~~~~~

________________________________

From: J A MANDLE <jamandle@...>

Sent: Sun, January 17, 2010 11:15:46 AM

Subject: [ ] Orencia

I get my Orencia infusion at the hospital.

Joyce

[Guest guest]

I go once every four weeks.  It should only take a few minutes for the paperwork

and a 1/2 hour to 45 minutes for the infusion.  I'm very lucky because they now

know me after year or so and they give it to me after work @ 5PM.  It's not bad,

I can relax, read and watch the news.

Joyce

[Guest guest]

hi

i'm going on my third infusion.no side effects yet.no relief yet.someone says

it takes aleast 5 to 6 months to get the full result.i'm praying

it will work.will keep you posted

 

ann  nj

From: Shauna <funkydiva00@...>

Subject: [ ] Orencia

Date: Tuesday, June 8, 2010, 9:11 AM

 

Hi,

My Reumatologist prescribed Orencia for my RA. I read about the symptoms which

includes the chance of developing certain cancers. Does anyone take this med and

if so does it help and what do you do to avoid such harsh symptoms?

Thanks,

Shauna.