Orencia

[Guest guest]

My mother just started Orencia approximately 2-3 weeks ago. It was rough at

first but we have seen a huge difference in her. It's still a little early to

tell but she has been walking more and has more energy....the pain seems to be

less severe as well. She was has tried Remicade and Enbril prior to Orencia and

did not do as well. Although for her, Enbril worked much better than the

Remicade.

I hope this helps.

Joanne Dubnicka <windey99@...> wrote: Has

anyone or is anyone on Orencia? I went to the

Rheumy today and we discussed how Remicade is not

working. He suggested to switch to Orencia. Just

wondering if anyone else on Orencia...

I didn't have a chance to ask about the vision

problem. I will have to wait until I see him again in

a couple of weeks...

Thanks for all your insight and help.

Joanne

---------------------------------

Building a website is a piece of cake.

Small Business gives you all the tools to get online.

[Guest guest]

oh, joy.

I'll keep that in mind & try not to get impatient...

Thanks!

Kind Regards,

Pat

Austin, TX

************************************** See what's new at http://www.aol.com

[Guest guest]

Pat-I know what you mean-next time I want to get an illness where they say

" oh, yes, in 3 hours and 12 minutes, this medicine will start to work and

you will feel remarkably better " !!!! Ann

[Guest guest]

Pat-I know what you mean-next time I want to get an illness where they say

" oh, yes, in 3 hours and 12 minutes, this medicine will start to work and

you will feel remarkably better " !!!! Ann

[Guest guest]

Pat-I know what you mean-next time I want to get an illness where they say

" oh, yes, in 3 hours and 12 minutes, this medicine will start to work and

you will feel remarkably better " !!!! Ann

[Guest guest]

Remember the old " Name that Tune " game show, anyone?

How about a round of " This Drug Can Cure Your Disease in 2hours and

4.3278 Minutes " ? (that is metric time for all our friends North of the

border)

Tom from PA

>

> Pat-I know what you mean-next time I want to get an illness where

they say

> " oh, yes, in 3 hours and 12 minutes, this medicine will start to work

and

> you will feel remarkably better " !!!! Ann

>

[Guest guest]

Remember the old " Name that Tune " game show, anyone?

How about a round of " This Drug Can Cure Your Disease in 2hours and

4.3278 Minutes " ? (that is metric time for all our friends North of the

border)

Tom from PA

>

> Pat-I know what you mean-next time I want to get an illness where

they say

> " oh, yes, in 3 hours and 12 minutes, this medicine will start to work

and

> you will feel remarkably better " !!!! Ann

>

[Guest guest]

Remember the old " Name that Tune " game show, anyone?

How about a round of " This Drug Can Cure Your Disease in 2hours and

4.3278 Minutes " ? (that is metric time for all our friends North of the

border)

Tom from PA

>

> Pat-I know what you mean-next time I want to get an illness where

they say

> " oh, yes, in 3 hours and 12 minutes, this medicine will start to work

and

> you will feel remarkably better " !!!! Ann

>

[Guest guest]

Isn't that the truth? Everything we use takes MONTHS to reach " maximum

effectiveness. " So, a solid year could pass while we struggle to find something

that actually helps! Joy, Oh joy.

Kind Regards,

Pat

Austin, TX

************************************** See what's new at http://www.aol.com

[Guest guest]

Isn't that the truth? Everything we use takes MONTHS to reach " maximum

effectiveness. " So, a solid year could pass while we struggle to find something

that actually helps! Joy, Oh joy.

Kind Regards,

Pat

Austin, TX

************************************** See what's new at http://www.aol.com

[Guest guest]

Isn't that the truth? Everything we use takes MONTHS to reach " maximum

effectiveness. " So, a solid year could pass while we struggle to find something

that actually helps! Joy, Oh joy.

Kind Regards,

Pat

Austin, TX

************************************** See what's new at http://www.aol.com

[Guest guest]

Pamela,

I just had my 3rd Orencia infusion. I have both RA

and osteoarthritis. I have been on Humira and

Remicade - both of which did not work. The Orencia --

it seems like there are more " pockets " of time that is

good (on a scale of 1-10, there have been more

" pockets " of time that are 6 than a 3). Not a whole

day is good, I can tell just little differences. I am

not going to say it is working because in the past,

meds have made changes but have not completely worked.

I have had both RA & OA for 8 years now. I have not

had any headaches from the Orencia. I do get tired

after taking the MTX. I see my RA doc next week and am

curious to see how the bloodwork looks.

I hope you are doing better and will keep you in my

thoughts.

Joanne

--- Pamela <pamelain1959@...> wrote:

> Hi my name is Pamela, just received my 4th infusion

> of Orencia. Was

> wondering if any of you that are on it have had bad

> headaches and kinda

> of just feeling yucky for a 2-3 days after the

> infusion. And has it

> been helping anyone. I have been on every other

> medicine that has come

> along for the last 32 years. I am 47 now...Thank

> you, Pamela

>

>

>

>

[Guest guest]

Joanne,

Sorry, I do not have any experience with Orencia. Perhaps one of the

others can help. But, be patient I have noticed the message board has been

extremely slow the past week.

Keeping you in my prayers,

sunflowerdeer wrote:

just wondering what other peoples experience is with orencia is.I have

been on mtx plaquinel embrel and humaria and nothing seems to be

helping me.my doc wants to start orencia.I have been told it is an IV

once a month.How are the side effects and how long does the IV take

about?Also worndering what the copays are like. Thanks Joanne

[Guest guest]

Joanne,

Sorry, I do not have any experience with Orencia. Perhaps one of the

others can help. But, be patient I have noticed the message board has been

extremely slow the past week.

Keeping you in my prayers,

sunflowerdeer wrote:

just wondering what other peoples experience is with orencia is.I have

been on mtx plaquinel embrel and humaria and nothing seems to be

helping me.my doc wants to start orencia.I have been told it is an IV

once a month.How are the side effects and how long does the IV take

about?Also worndering what the copays are like. Thanks Joanne

[Guest guest]

I started on remicade. During my 2nd infusion I started having side effects and

couldn't take it. The doctor recomended orencia. I started in September and it

has been a miracle. All I do is the infusion once a month and nothing else. I do

get sick once in a while. Nothing big though. I would highly recommend

orencia!!!!

[Guest guest]

Hi ,

My doctor in Boston really likes Orencia. When I mentioned maybe starting

Remicade he

told me he is against it and thinks Orencia is a much better choice. You'll

probably like it.

Enbrel is not doing anything great for me yet (8 weeks), I'll probably go on

Orencia too.

>

> Hi Everyone,

>

> After my doctor's appt today we have made the decision to stop Remicade,

basically

because after every infusion (except one) I have needed an antibiotic and after

the last one

I ended up in the hospital for a week with a flare. Anyway, the doctor is

recommending

Orencia. Is anyone on Orencia and can give me their personal opinion. Thanks

in advance.

mary in pa

>

>

[Guest guest]

I don't receive premedication and my rheumie will not allow for it.  I have had

problems with just about every biologic, but Remicade worked wonderful until I

had a flare.  When I had suggested to my rheumie about trying it again but maybe

premed myself he said absolutely not.  It is one of those things that vary from

doctor to doctor.

 

With Orencia, my breasts swelled so badly I could hardly get out of bed.  Don't

know if this was a side effect or something that just happened, but it was

awful.  Remicade and Humira I had breathing issues.  You are so brave, if I were

you there would be no way I would take a biologic after what you went through. 

Glad to see that you at least have a seemingly good team of doctors who are

looking after you.

 

Shandi

From: BadKneesDebs@... <BadKneesDebs@...>

Subject: [ ] Orencia

Date: Monday, July 21, 2008, 11:44 AM

Does anyone on Orencia receive a " pre op " before the infusion begins?

My first infusion, I had a headache and nausea for most of the day and

just a general feeling of " YUK " . I receive IV Iron every 4 weeks and

always receive a " pre op " of Benedryl and Tylenol. The amount of

Benedryl is small enough that you don't pass out, just enough to keep

you comfortable. I used to receive Remicade over 5 years ago and I

received the " pre op " .

Now I don't know should I bring this up at my rheumy's office prior to

the infusion, I don't actually have an appt to " see " the rheumy until

after the second infusion. I could take the medication at home (only

about 10-15 minutes away) and keep my big mouth shut!

How many cycles does it take to feel relief? The tech during the first

infusion said that it would be 2-3 cycles, so I am still sucking on

Percocet, which isn't much cutting it. My hands are oh so swollen and

painful.

If I think about the Orencia too much, I still get REALLY nervous over

the possibilities. I was on Remicade over 5 years ago and while having

several knee surgeries (one of the components of a knee replacement

cracked in half), I developed an infection that turned into sepsis that

turned into septic shock and actually had cardiac and respiratory

arrest. I battled the sepsis which turned into MRSA for 5 years and

about a year ago finally had an above the knee amputation. The

infectious disease doctor says that Orencia and them kinds of agents

can be tried again, but so far have had a nail infection and a bladder

infection. But everyone says " Full Steam Ahead " !!!

Well, the entire country is hot, so try to stay cool with lots of

Cabana Boys and Pina Coladas and nice cool pool to sooth our joints.

Loving, gentle, tender hugs........ ........

Debs in FL

[Guest guest]

Hi Shandi,

Maybe the difference is that I received my Remicade and now receive the

IV Iron is at a Oncologists office. I am receiving the Orencia at

rheumy's office.

I felt that I needed to start some type of treatment if it was OK with

the ID doctor as I have already

lost 2 joints (both knees) and my hips are showing significant joint

damage. My hands have gotten so bad that my daughter has to help me

with buttons and my earrings.

Trying to take it one day at a time.

Gentle hugs,

Debs in FL

[Guest guest]

Debs in florida and Everyone

 

Gosh darn Debs, your leg amputated from a knee replacement, and cardiac arrest.

I know how dangerous surgerys are but that is scary. I am so sorry for your loss

limb. I am glad that you bounced back like you did.

 

 We got hight temps in South carolina, 97 degree F..

I stay in the house with the air. But the winters are great here. I love

florida, I stayed there a few months during november. It was a wonderful

experience.

 

Can someone explain Orencia for me?  And what is infusion? 

pain free days to all

Clora May

 

From: BadKneesDebs@... <BadKneesDebs@...>

Subject: [ ] Orencia

Date: Monday, July 21, 2008, 11:44 AM

Does anyone on Orencia receive a " pre op " before the infusion begins?

My first infusion, I had a headache and nausea for most of the day and

just a general feeling of " YUK " . I receive IV Iron every 4 weeks and

always receive a " pre op " of Benedryl and Tylenol. The amount of

Benedryl is small enough that you don't pass out, just enough to keep

you comfortable. I used to receive Remicade over 5 years ago and I

received the " pre op " .

Now I don't know should I bring this up at my rheumy's office prior to

the infusion, I don't actually have an appt to " see " the rheumy until

after the second infusion. I could take the medication at home (only

about 10-15 minutes away) and keep my big mouth shut!

How many cycles does it take to feel relief? The tech during the first

infusion said that it would be 2-3 cycles, so I am still sucking on

Percocet, which isn't much cutting it. My hands are oh so swollen and

painful.

If I think about the Orencia too much, I still get REALLY nervous over

the possibilities. I was on Remicade over 5 years ago and while having

several knee surgeries (one of the components of a knee replacement

cracked in half), I developed an infection that turned into sepsis that

turned into septic shock and actually had cardiac and respiratory

arrest. I battled the sepsis which turned into MRSA for 5 years and

about a year ago finally had an above the knee amputation. The

infectious disease doctor says that Orencia and them kinds of agents

can be tried again, but so far have had a nail infection and a bladder

infection. But everyone says " Full Steam Ahead " !!!

Well, the entire country is hot, so try to stay cool with lots of

Cabana Boys and Pina Coladas and nice cool pool to sooth our joints.

Loving, gentle, tender hugs........ ........

Debs in FL

[Guest guest]

Debs,

I can't answer your question, because I've never been on Orencia. I

just wanted to wish you good luck with your infusions. I hope that they

give you relief with no adverse side effects. I followed your saga

before and know that you had a terrible time. You're due for some good

luck, with all that you've been through. My thoughts and prayers will

be with you.

It's also good to hear you talking about cabana boys again.

Sue

On Monday, July 21, 2008, at 11:44 AM, BadKneesDebs@... wrote:

> Does anyone on Orencia receive a " pre op " before the infusion begins?

> My first infusion, I had a headache and nausea for most of the day and

> just a general feeling of " YUK " .

[Guest guest]

Sue,

Thanks for your good wishes, they mean so much. I am sorry it has

taken so long for me to get to the posts, but we have had some nasty

weather here in South Florida. I had to give my cabana boys a few

days off. For some reason they just don't feel like fanning me when we

have pea size hail and lightning strikes. Help these days!!!!!

I can't tell you how good it feels to be back with my friends. There

were days gone by that the possibility of me never coming back or even

remembering anything or anyone. Being on a ventilator 5 times doesn't

do the brain any good. I am truly a lucky woman and I am grateful!

Gentle, tender, loving hugs...................

Debs in FL

[Guest guest]

No apologies neccessary. We all have our moments and with RA too many

of them! I hope this group does help you. It is my life line where

I connect with others who do understand.

Shirley

>

> Shirley and the rest of the group,

>  I am new to this group and I apoligize for starting out yesterday

ranting. It has been a relief (or comfort) reading of others with the

same problems and axieties that I have been through and how they are

dealing with theirs.

> Ra

>  

>

>

>

>

>

[Guest guest]

Don,

I hope you continue with this group. When I have had a hard day I

come here.

Going back to school and getting your degree, might be an

inspiration for other's here. Congratulations.

It is good to read you are starting back on Orencia. I hope you get

the insurance situation straightened out really soon.

Shirley

>

> Shirley and the rest of the group,

> Thank you for your kind words and encouragement. I am new to this

group and I apologize for starting out by ranting yesterday. The

letters I have read have been an comfort and support knowing that

others are going through situations and problems i have had.

>  

> RA has been a curse and a blessing to me. I had to leave after 18

years from a job I loved. It took two long years of barely living

before I was approved for disability. However, I went back to school

and graduated last year with a degree in Elementary Education. I was

given more free time to spend in my church and teach Sunday school

and become a deacon.

>  

> Thanks to all for sharing your lives. RA seems to make a person

reflect on the life that is left them after determining how to deal

with that days pain or how long before it starts again.

>  

> P.S. I am restarting my Orencia infusions tomorrow after stopping

for four months. I look forward to gaining some mobility.

>  

> Thanks again

> Don

>

>

>

>

>

[Guest guest]

Hi Don - I would say that after reading your words, you are a prime

example of how when God closes one door, He opens another. God Bless

you.........Doreen

Shirley and the rest of the group,

Thank you for your kind words and encouragement. I am new to this

group and I apologize for starting out by ranting yesterday. The

letters I have read have been an comfort and support knowing that

others are going through situations and problems i have had.

 

RA has been a curse and a blessing to me. I had to leave after 18

years from a job I loved. It took two long years of barely living

before I was approved for disability. However, I went back to school

and graduated last year with a degree in Elementary Education. I was

given more free time to spend in my church and teach Sunday school and

become a deacon.

 

Thanks to all for sharing your lives. RA seems to make a person

reflect on the life that is left them after determining how to deal

with that days pain or how long before it starts again.

 

P.S. I am restarting my Orencia infusions tomorrow after stopping for

four months. I look forward to gaining some mobility.

 

Thanks again

Don

[Guest guest]

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