Remicade

[Guest guest]

,

Good luck on the Remicade. I hope it does for you what it has done for

. What was the name of the drug study you were on? Was it a daily or

weekly injection? Tery

[Guest guest]

Yeah!

You're on your way . Soon we will be able to compare notes! If you have

any questions please ask me. I can't wait. Oh, for me, I felt it the very

next day. But if you don't feel it for a week, or two don't worry bcs a lady

I was talking to said it took her about a week. Everyone is different. But I

truly believe this will work for you. If you are anything like me where

nothing works EXCEPT prednisone, then this may be the one. My fingers AND

toes are crossed for ya!

Good Luck. Be sure and let me know when the first treatment is.

Hugs, Sue

[Guest guest]

Congratulations ! I hope you have the same success that has with

Remicade. I hope it is approved quickly and you respond immediately as many

people have done. Let us know how it goes.

a

----- Original Message -----

From: Valued Compaq Customer <ruf-caimi@...>

< egroups>

Sent: Friday, July 07, 2000 12:24 PM

Subject: [ ] Remicade

> Hi Sue,

> I thought I would let you know, I am going on Remicade. I am waiting to

> hear about the approval. I tried a drug study and felt no relief at all.

> I started to doubt myself and thought maybe I was making this worse, but

> the swollen joint count was higher and there where additional painful

> joints. I was very uncomfortable with the drug study, the needle was so

> painful and burned all the down my leg. The second shot I felt nothing, I

> guess the second injection was the placebo. He told me, if the Remicade

> brings no relief he would re-evulate everything but then he ask me if when

> I was in Virginia the extra pred. helped. I told it made a hugh

difference

> and he told me that it is definitely the RA. He wasn't sure if I had

Fibro

> or not, but now he feels I probably do. Not that it even matters.

> I am going to Chestnut Hill Hosp. for the treatments. Since I am going on

> vacation and I have had such a problem with side effects it will be done

as

> soon as I come home. I wanted to get this off to you, I guess I am

excited

> about all this. The thought of a better quality life is so wonderful.

> Hope you are feeling good today? I keep telling him about you and how

> this how helped you. Now if my SS would go through. Now I like to think

> in my life the BEST is yet to come.

>

>

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

> Failed tests, classes skipped, forgotten locker combinations.

> Remember the good 'ol days

> 1/5531/7/_/478567/_/962986674/

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

>

> URL to change your membership options:

/group/

> RA-support website: http://www.rasupport.webprovider.com/

> Our chat room: www.delphi.com/RheumatoidArth1/start

>

[Guest guest]

Congratulations ! I hope you have the same success that has with

Remicade. I hope it is approved quickly and you respond immediately as many

people have done. Let us know how it goes.

a

----- Original Message -----

From: Valued Compaq Customer <ruf-caimi@...>

< egroups>

Sent: Friday, July 07, 2000 12:24 PM

Subject: [ ] Remicade

> Hi Sue,

> I thought I would let you know, I am going on Remicade. I am waiting to

> hear about the approval. I tried a drug study and felt no relief at all.

> I started to doubt myself and thought maybe I was making this worse, but

> the swollen joint count was higher and there where additional painful

> joints. I was very uncomfortable with the drug study, the needle was so

> painful and burned all the down my leg. The second shot I felt nothing, I

> guess the second injection was the placebo. He told me, if the Remicade

> brings no relief he would re-evulate everything but then he ask me if when

> I was in Virginia the extra pred. helped. I told it made a hugh

difference

> and he told me that it is definitely the RA. He wasn't sure if I had

Fibro

> or not, but now he feels I probably do. Not that it even matters.

> I am going to Chestnut Hill Hosp. for the treatments. Since I am going on

> vacation and I have had such a problem with side effects it will be done

as

> soon as I come home. I wanted to get this off to you, I guess I am

excited

> about all this. The thought of a better quality life is so wonderful.

> Hope you are feeling good today? I keep telling him about you and how

> this how helped you. Now if my SS would go through. Now I like to think

> in my life the BEST is yet to come.

>

>

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

> Failed tests, classes skipped, forgotten locker combinations.

> Remember the good 'ol days

> 1/5531/7/_/478567/_/962986674/

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

>

> URL to change your membership options:

/group/

> RA-support website: http://www.rasupport.webprovider.com/

> Our chat room: www.delphi.com/RheumatoidArth1/start

>

[Guest guest]

Congratulations ! I hope you have the same success that has with

Remicade. I hope it is approved quickly and you respond immediately as many

people have done. Let us know how it goes.

a

----- Original Message -----

From: Valued Compaq Customer <ruf-caimi@...>

< egroups>

Sent: Friday, July 07, 2000 12:24 PM

Subject: [ ] Remicade

> Hi Sue,

> I thought I would let you know, I am going on Remicade. I am waiting to

> hear about the approval. I tried a drug study and felt no relief at all.

> I started to doubt myself and thought maybe I was making this worse, but

> the swollen joint count was higher and there where additional painful

> joints. I was very uncomfortable with the drug study, the needle was so

> painful and burned all the down my leg. The second shot I felt nothing, I

> guess the second injection was the placebo. He told me, if the Remicade

> brings no relief he would re-evulate everything but then he ask me if when

> I was in Virginia the extra pred. helped. I told it made a hugh

difference

> and he told me that it is definitely the RA. He wasn't sure if I had

Fibro

> or not, but now he feels I probably do. Not that it even matters.

> I am going to Chestnut Hill Hosp. for the treatments. Since I am going on

> vacation and I have had such a problem with side effects it will be done

as

> soon as I come home. I wanted to get this off to you, I guess I am

excited

> about all this. The thought of a better quality life is so wonderful.

> Hope you are feeling good today? I keep telling him about you and how

> this how helped you. Now if my SS would go through. Now I like to think

> in my life the BEST is yet to come.

>

>

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

> Failed tests, classes skipped, forgotten locker combinations.

> Remember the good 'ol days

> 1/5531/7/_/478567/_/962986674/

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

>

> URL to change your membership options:

/group/

> RA-support website: http://www.rasupport.webprovider.com/

> Our chat room: www.delphi.com/RheumatoidArth1/start

>

[Guest guest]

Congratulations ! I hope you have the same success that has with

Remicade. I hope it is approved quickly and you respond immediately as many

people have done. Let us know how it goes.

a

----- Original Message -----

From: Valued Compaq Customer <ruf-caimi@...>

< egroups>

Sent: Friday, July 07, 2000 12:24 PM

Subject: [ ] Remicade

> Hi Sue,

> I thought I would let you know, I am going on Remicade. I am waiting to

> hear about the approval. I tried a drug study and felt no relief at all.

> I started to doubt myself and thought maybe I was making this worse, but

> the swollen joint count was higher and there where additional painful

> joints. I was very uncomfortable with the drug study, the needle was so

> painful and burned all the down my leg. The second shot I felt nothing, I

> guess the second injection was the placebo. He told me, if the Remicade

> brings no relief he would re-evulate everything but then he ask me if when

> I was in Virginia the extra pred. helped. I told it made a hugh

difference

> and he told me that it is definitely the RA. He wasn't sure if I had

Fibro

> or not, but now he feels I probably do. Not that it even matters.

> I am going to Chestnut Hill Hosp. for the treatments. Since I am going on

> vacation and I have had such a problem with side effects it will be done

as

> soon as I come home. I wanted to get this off to you, I guess I am

excited

> about all this. The thought of a better quality life is so wonderful.

> Hope you are feeling good today? I keep telling him about you and how

> this how helped you. Now if my SS would go through. Now I like to think

> in my life the BEST is yet to come.

>

>

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

> Failed tests, classes skipped, forgotten locker combinations.

> Remember the good 'ol days

> 1/5531/7/_/478567/_/962986674/

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

>

> URL to change your membership options:

/group/

> RA-support website: http://www.rasupport.webprovider.com/

> Our chat room: www.delphi.com/RheumatoidArth1/start

>

[Guest guest]

I am the one for you to talk to. I have had 4 treatments so far and my

next one is August 9. Soon, will also be joining the Remicade relief.

~Sue

[Guest guest]

Dear Sue,

Any experience (yours or someone you know) with going off the

suggested regime of week 0,2,6 and then every 8 weeks? And have you

heard anyone getting unbelievable results the first two doses, and

then practically zip? As I explained in my earlier post, my mom had

to

stop the dose at six weeks because of an infusion reaction, so her MD

waited another 4 weeks (so basically the second and third doses were

8

weeks apart, not the 4 weeks as rec.), and I was wondering if that

might account for the diminished response.

Also, she's on oruvail, and gold injections- not on MTX (the MD wsas

trying to avoid that route).

Marilyn

> I am the one for you to talk to. I have had 4 treatments so far

and my

> next one is August 9. Soon, will also be joining the Remicade

relief.

>

> ~Sue

[Guest guest]

Hi ,

Thanks for taking me off the hook just in case so I don't have to eat my

words. =)

I was really tired after my first dose because the day before is when I had

that attempted break in and my sleep got messed up. So I was stressed all day

the day before. I was a bit more tired too bcs it was the first dose and I

wasn't sure what to expect and was a bit nervous. But I have been fine after

the other treatments. You can have someone there with you if you like, but

the Benadryl will probably put you out and you'll sleep. You'll be fine to

drive yourself. But if you'll feel safer, you could have someone drive you

the first time. I don't drive myself bcs my car is dead. So I have someone

drop me off and pick me up. No reason for them to stay and sit around bored

for hours, while you sleep due to Benadryl.

Take a sack lunch, a book, or whatever you'd like to work on. I have been

taking my headphones so I can " ignore " people there that are getting various

treatments that I would prefer not to chat with. I have come across some

weirdo's. With the headphones I don't feel like I am being rude by ignoring

them. =) This one guy would NOT leave me alone. Thank goodness I had my

headphones. If I don't feel like listening to music, I just put the phones on

and leave the radio off. hehe.. Dress comfy. Sweats.

I am so excited for you!

~Sue

[Guest guest]

Woohoo ,

Crossing my fingers for you this works for you like it has . Good luck.

Tery

[Guest guest]

That is what I have heard too. About the Enbrel and Remicade. But I *think*

if your doctor talks to the insurance company and says that Enbrel is a last

resort for you, they could work something out. That is what my doc did for

the Remicade.

Now, you've been told $5000.00 Wow! I was told $2,000.00. And when I got my

Medicare invoice it said a little over $400 was covered. So, I think that is

what I am getting mine at. But I'm not sure. I'll have to check into that.

~Sue

> Well for me, everything else has failed. The approval came from first the

> drug company and then my insurance. I have personal choice. Personal

> choice would only pay for half of enbrel, it is expensive so I just

> couldn't afford it. Remicade they will pay the whole thing, because it is

> done in a hospital. Enbrel would cost 1200.00 a month. I would have had

> to put that money out each month and wait for 600.00 back. Remicade is

> covered 100% and this cost 5,000.00 a treatment, very expensive. This is

> all that is left for me, at this time.

[Guest guest]

,

I am glad to hear that you have been approved for remicade. Can I ask if the

approval was thru your insurance or was it a " you've tried everything else,

now you can have the remicade " ? I ask because I need to find another drug

again. This second trial on the arava has left me with high liver enzymes

again. my Md is talking about doing enbrel but I still have tha aftermath of

a sinus infection. I ended up with head to toe hives on the augmentin last

week. I think my provider (Kaiser Permenente) will only offer endbrel, then

remicade, then prosorba. I think, but am not positive, that it's on a need

basis as far as tolerance and reactions to other DMARDS. Anyway, I need to

repeat labs tomorrow and hopefully next week will be able to start

something. I am interested, and have been hopeful, in everyone's responses

to both enbrel and remicade.

My prayers are with you for an event free (besides benefit) procedure

Barb

-----Original Message-----

From: Valued Compaq Customer <ruf-caimi@...>

egroups < egroups>

Date: Thursday, July 20, 2000 8:36 AM

Subject: [ ] remicade

>Hello,

> Just thought I let you know I have my approval for Remicade. The first

>treatment will be on August 17. She told me it is in a small room that it

>is done in and that I will have two nurses. It is done on a one to one

>bases. Because the room is small I will be the only one there. It will

>take at least three hours.

> Okay Sue now we are partners in remicade. I will take even a little

>relief, this summer has not been kind to me. She told me they have not had

>anyone suffer bad side effects. I told her about the problems I have with

>side effects, just so they are ready in case something comes up. Today, I

>don't want to think about if this doesn't work. The nurse did tell me that

>remicade is getting so popular that they have to get a larger area.

>

>

>

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

>Remember all those 80's songs about changing the world? Well, we're

>finally old enough to make those changes. Click to prove you meant it.

>1/6704/7/_/478567/_/964107409/

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

>

>URL to change your membership options:

/group/

>RA-support website: http://www.rasupport.webprovider.com/

>Our chat room: www.delphi.com/RheumatoidArth1/start

>

>

[Guest guest]

Barb,

Good luck! Keep us all posted. I know how frustrating the pain and waiting

can be. In my opinion, our doctors don't understand what we go through. Yes,

they studied, went to med school, residency, etc, etc. BUT they have not

" lived " with it, in my case, 18 years of severe pain trying drug after drug

and not finding my cocktail. So, I go through side effects, feeling nausea,

etc, etc. Not to mention the horrid pain. Doctors " see " us in pain. They

" hear " what we tell them. But they do not " feel " our pain. The thing I'd like

to get across to them is that this is our life. We get ONE chance to make our

dreams and goals come true. And we'd like to do it with little pain. When

they make us wait all the time, they are leading us closer to the edge of

breaking down. Just my opinion. Or they lead you so close you get DAMN mad

and say to yourself, " I am gonna do something about it! " This is *my* life

they are experimenting with. And I believe my doc wanted me on Remicade as an

experiment. I felt like a damn guinea pig. And the fact he brought in another

doc and asked me while she was standing there if I minded if she stay. Rather

than asking first. I am grateful it works, but I am a person first with

feelings other than RA pain.

~Sue

> Anyway, I need to

> repeat labs tomorrow and hopefully next week will be able to start

> something. I am interested, and have been hopeful, in everyone's responses

> to both enbrel and remicade.

>

> My prayers are with you for an event free (besides benefit) procedure

> Barb

[Guest guest]

Sue,

I totally agree with you, it is my life and I think sometimes the Doc's get

a little used to seeing people in pain and complaining! I really like my

Rhuemy but I know for a fact that he is way overworked. He is the only

Rhuemy for 4 of kaisers facilities, in four different cities! I really don't

know how he does it, ans his wife is an MD to boot!! One good thing is that

when I realized that he was so stretched I started asking for copies of all

my tests. this has helped us both stay on top of things, especially now with

my liver stuff. I can't afford for something to be overlooked. I think he

thinks I'm too involved, but again....it's my life!!!! He only see's and

hears from me when it's intolerable, but there are many days where I suffer

silently, as I know alot of us do.

Thanks for sharing your experiences with us all, there is power in

knowledge!!

Barb

-----Original Message-----

From: Rysu19@... <Rysu19@...>

egroups < egroups>

Date: Thursday, July 20, 2000 8:57 PM

Subject: Re: [ ] remicade

>Barb,

>

>Good luck! Keep us all posted. I know how frustrating the pain and waiting

>can be. In my opinion, our doctors don't understand what we go through.

Yes,

>they studied, went to med school, residency, etc, etc. BUT they have not

> " lived " with it, in my case, 18 years of severe pain trying drug after drug

>and not finding my cocktail. So, I go through side effects, feeling nausea,

>etc, etc. Not to mention the horrid pain. Doctors " see " us in pain. They

> " hear " what we tell them. But they do not " feel " our pain. The thing I'd

like

>to get across to them is that this is our life. We get ONE chance to make

our

>dreams and goals come true. And we'd like to do it with little pain. When

>they make us wait all the time, they are leading us closer to the edge of

>breaking down. Just my opinion. Or they lead you so close you get DAMN mad

>and say to yourself, " I am gonna do something about it! " This is *my* life

>they are experimenting with. And I believe my doc wanted me on Remicade as

an

>experiment. I felt like a damn guinea pig. And the fact he brought in

another

>doc and asked me while she was standing there if I minded if she stay.

Rather

>than asking first. I am grateful it works, but I am a person first with

>feelings other than RA pain.

>

>~Sue

>

>> Anyway, I need to

>> repeat labs tomorrow and hopefully next week will be able to start

>> something. I am interested, and have been hopeful, in everyone's

responses

>> to both enbrel and remicade.

>>

>> My prayers are with you for an event free (besides benefit) procedure

>> Barb

>

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

>Missing old school friends? Find them here:

>1/7079/7/_/478567/_/964151831/

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

>

>URL to change your membership options:

/group/

>RA-support website: http://www.rasupport.webprovider.com/

>Our chat room: www.delphi.com/RheumatoidArth1/start

>

>

[Guest guest]

,

thanks for the offer of help. I have the number for prosorba and will call

next week. I am conceren about my veins now that you mention it. I have very

fine rolly polly veins, and they have such a hard time just trying to draw

blood. I've had so many blood draws and IVs from multiple surgeries that my

veins are all scarred up. I wonder if this will have an impact on using

remicade also?!

My neighbor across the street is the nurse who gives the enbrel shots at our

local kaiser., was asking me questions yesterday about remicade and

prosorba. i guess a patient made a comment to her that he was going to be

starting the prosorba soon. She said she'd keep me posted.

It's so hard to believe the costs of these drugs. I am fortunate to only

have to pay $10 for a 90 day perscription. I don't know how all that will

work with remicade and such, but I do know that my office visits are $5 and

that is what I have paid for my last 6 or 7 surgeries.

I pray that I can find something that will give me some quality " active'

time with my family. maybe that will be enbrel. I'll keep you posted.

Barb

-----Original Message-----

From: Valued Compaq Customer <ruf-caimi@...>

egroups < egroups>

Date: Thursday, July 20, 2000 11:47 AM

Subject: [ ] remicade

>Hi Barb,

> Well for me, everything else has failed. The approval came from first the

>drug company and then my insurance. I have personal choice. Personal

>choice would only pay for half of enbrel, it is expensive so I just

>couldn't afford it. Remicade they will pay the whole thing, because it is

>done in a hospital. Enbrel would cost 1200.00 a month. I would have had

>to put that money out each month and wait for 600.00 back. Remicade is

>covered 100% and this cost 5,000.00 a treatment, very expensive. This is

>all that is left for me, at this time.

> Becareful of the prosorba, I did a lot of research on that one. It will

>tear up your veins, which is not a good idea. Plus you need to have very

>good veins, something I do not have. If you are on an ACE Inhibitor it can

>mess up your blood pressure. Actually,if I remember correctly, they won't

>even do it with the AH. A nurse talked me out of it, it is a little

>dangerous. You can call the prosorba people, they will talk to you. I got

>the number right off the computer. Think I just did www.prosorba.com. If

>you need information I can dig it up. At this point any amount of relief

>will be welcomed.

> Hope you can find something, soon. If I can help let me know today or

>tomorrow.

>

>

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

>Huge Shoe Selection at Zappos.com

>(small sizes also available)

>1/7062/7/_/478567/_/964118834/

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

>

>URL to change your membership options:

/group/

>RA-support website: http://www.rasupport.webprovider.com/

>Our chat room: www.delphi.com/RheumatoidArth1/start

>

>

[Guest guest]

Excellent news, ! I'm so happy for you. August 17th is coming very

soon. I really hope that Remicade works for you.

----- Original Message -----

From: " Valued Compaq Customer " <ruf-caimi@...>

< egroups>

Sent: Thursday, July 20, 2000 10:30 AM

Subject: [ ] remicade

> Hello,

> Just thought I let you know I have my approval for Remicade. The first

> treatment will be on August 17. She told me it is in a small room that it

> is done in and that I will have two nurses. It is done on a one to one

> bases. Because the room is small I will be the only one there. It will

> take at least three hours.

> Okay Sue now we are partners in remicade. I will take even a little

> relief, this summer has not been kind to me. She told me they have not

had

> anyone suffer bad side effects. I told her about the problems I have with

> side effects, just so they are ready in case something comes up. Today, I

> don't want to think about if this doesn't work. The nurse did tell me

that

> remicade is getting so popular that they have to get a larger area.

>

>

[Guest guest]

,

Congratulations! I'm glad you finally got your approval. I hope you have

great results.

a

----- Original Message -----

From: Valued Compaq Customer <ruf-caimi@...>

< egroups>

Sent: Thursday, July 20, 2000 11:30 AM

Subject: [ ] remicade

> Hello,

> Just thought I let you know I have my approval for Remicade. The first

> treatment will be on August 17. She told me it is in a small room that it

> is done in and that I will have two nurses. It is done on a one to one

> bases. Because the room is small I will be the only one there. It will

> take at least three hours.

> Okay Sue now we are partners in remicade. I will take even a little

> relief, this summer has not been kind to me. She told me they have not

had

> anyone suffer bad side effects. I told her about the problems I have with

> side effects, just so they are ready in case something comes up. Today, I

> don't want to think about if this doesn't work. The nurse did tell me

that

> remicade is getting so popular that they have to get a larger area.

>

>

>

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

> Remember all those 80's songs about changing the world? Well, we're

> finally old enough to make those changes. Click to prove you meant it.

> 1/6704/7/_/478567/_/964107409/

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

>

> URL to change your membership options:

/group/

> RA-support website: http://www.rasupport.webprovider.com/

> Our chat room: www.delphi.com/RheumatoidArth1/start

>

[Guest guest]

YIPPEEE ........ glad to read that you will be starting Remicade!

Hope that this is your miracle drug!

~ Esther & Carol ~

----- Original Message -----

From: Valued Compaq Customer <ruf-caimi@...>

< egroups>

Sent: Thursday, July 20, 2000 11:30 AM

Subject: [ ] remicade

> Hello,

> Just thought I let you know I have my approval for Remicade. The first

> treatment will be on August 17. She told me it is in a small room that it

> is done in and that I will have two nurses. It is done on a one to one

> bases. Because the room is small I will be the only one there. It will

> take at least three hours.

> Okay Sue now we are partners in remicade. I will take even a little

> relief, this summer has not been kind to me. She told me they have not

had

> anyone suffer bad side effects. I told her about the problems I have with

> side effects, just so they are ready in case something comes up. Today, I

> don't want to think about if this doesn't work. The nurse did tell me

that

> remicade is getting so popular that they have to get a larger area.

>

>

>

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

> Remember all those 80's songs about changing the world? Well, we're

> finally old enough to make those changes. Click to prove you meant it.

> 1/6704/7/_/478567/_/964107409/

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

>

> URL to change your membership options:

/group/

> RA-support website: http://www.rasupport.webprovider.com/

> Our chat room: www.delphi.com/RheumatoidArth1/start

[Guest guest]

Go to doctor today for sunburn. A friend of mine thought she did not get

enough sun to be like she was also, and when she went to doctor, he told

her it was " sun poisioning " .

And said it was different from " sunburn " ... go figure. Otherwise she

had no health problems. Just the sunburn. But with your health problems

you should have it checked. She was sick as dog with her burn. Took all

kinds of medicine for it. I can't remember what all, as this was about

10 years ago.

Susie

Valued Compaq Customer wrote:

> Hi Sue,

> I wanted to ask you, I am so sunburned. I even have blisters, I

> am a

> number of different colors from tan to red. My appointment for the

> remicade is the 17th, I hope by then everything will be fine. Do you

> think

> I should wait a few days to do the first remicade treatment? I know

> infection can be a side effect. I was thinking of starting the

> treatments

> at the appointment that should be my second treatment. I hate to wait

>

> though, I am anxious to get started. Looking forward to any relief.

> Any

> suggestions.

> My attorney actually called me back, I am so impressed. He

> said, he feels

> WC does not want to pay for this injury for the rest of my life, so

> they

> are going to try something. He said, the doctor did his job,these

> kinds of

> reports are what he gets paid to do. If he didn't write negative

> reports

> he would no longer work for the insurance company. They may try to

> stop my

> checks but he feels everything is okay. If the SS would just go

> through

> all this would end. I ask him if he felt okay about everything, he

> said

> yes. He told me he understands my frustration. So we wait, the next

> move

> is theirs. I guess if the SS doesn't go through it is back to court.

> Which is a pain because it cost me money I don't have for my doctors

>

> depositions. If everybody could just say a prayer that things would

> work

> out and the SS would finally go through, this legal stuff could end.

> Thanks Guys,

>

>

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

>

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

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Our chat room: www.delphi.com/RheumatoidArth1/start

[Guest guest]

Can you let me know if the remicade works and what it does because that is

the next step if arava does not work

Ann

----- Original Message -----

From: Valued Compaq Customer <ruf-caimi@...>

< egroups>

Sent: Tuesday, August 08, 2000 11:53 AM

Subject: [ ] remicade

> Hi Sue,

> I wanted to ask you, I am so sunburned. I even have blisters, I am a

> number of different colors from tan to red. My appointment for the

> remicade is the 17th, I hope by then everything will be fine. Do you

think

> I should wait a few days to do the first remicade treatment? I know

> infection can be a side effect. I was thinking of starting the treatments

> at the appointment that should be my second treatment. I hate to wait

> though, I am anxious to get started. Looking forward to any relief. Any

> suggestions.

> My attorney actually called me back, I am so impressed. He said, he feels

> WC does not want to pay for this injury for the rest of my life, so they

> are going to try something. He said, the doctor did his job,these kinds

of

> reports are what he gets paid to do. If he didn't write negative reports

> he would no longer work for the insurance company. They may try to stop

my

> checks but he feels everything is okay. If the SS would just go through

> all this would end. I ask him if he felt okay about everything, he said

> yes. He told me he understands my frustration. So we wait, the next move

> is theirs. I guess if the SS doesn't go through it is back to court.

> Which is a pain because it cost me money I don't have for my doctors

> depositions. If everybody could just say a prayer that things would work

> out and the SS would finally go through, this legal stuff could end.

> Thanks Guys,

>

>

>

>

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Our chat room: www.delphi.com/RheumatoidArth1/start

>

>

[Guest guest]

Thank You . It really will help. I plan to talk to my RD before my next

appointment Sept 18, bcs I don't want to take the benedryl, and being there

for 5 hours is getting a bit ridiculous! It takes my entire day.

If it's OK, I will ask a few specific questions:

1) Do they give you another bag along with your Remicade? It could be sodium

chloride.

2) Do they make you stay an extra 30 minutes when it is finished to be sure

there will be no reaction?

3) And when you get there, do they start the Remicade right away. Why I ask

that is bcs they give me sodium chloride and don't start the Remicade until

30 to 45 minutes later. Adding time to my stay.

~Rainy

> Hi Rainy Sue,

> I didn't forget your e-mail. I have so busy with getting back to school

> and trying to deal with the fatigue. I promise a detail outline of my

> first remicade. Also, they gave me a nice brochure that had a little diary

> in it. Tonight I promise, I want to tell you about it.

>

[Guest guest]

I have been on remicade for about five years now, and I have had adverse reactions but only because I was infused inproperly, and was not taking MTX. Eventually my body will build up a resistance to the medication, but as long as I stay well hydrated and make sure the infusion is given in better increments then I dont feel half so bad as I used to. For instance, they start you off slow but then speed up so you are in and out faster. 20-40-80-150-250 is a bad thing. 20-40-60-120-150-200-250 is better. Yours, Deborah

[Guest guest]

Hello! I am trying to find some information on Remicade. I do not have

RA or Crohn's, but I was diagnosed with a bone marrow disease in 1993.

I am currently using Remicade. I am trying to figure out if anyone

has heard of Remicade being used to help bone marrow disease. Thanks.

De'Vonda

[Guest guest]

I have Remicade questions. New rheumy has ordered many tests before first infusion. I am so sensitive to everything... Can they handle if I should have a terrible reaction? Are the first 3 infusions a smaller dose? I should have asked more questions but I was in such pain. She gave me a steroid shot in the knee cause my knees were killing me. Do they adjust dosage to body size for Remicade?? I am very, very small...97 pounds. Anybody feel funny or bad after infusion???

Thanks in advance,

Kay in La.

----- Original Message -----

From: Deborah Bargad

Rheumatoid Arthritis

Sent: Wednesday, April 26, 2006 5:25 PM

Subject: Re: Enbrel

I love Remicade although it doesnt seem to be working as well as in the past. That is my fault though because I waited far too long to have my last infusion. Almost 16 weeks. I think my body loses memory or TNF binding capacity. I havent had problems with infection, though I am slow to heal from a bruise etc but I am anemic. My benefit originally in 2000 was almost instantaneous. I didnt even take MTX because I felt so much better. It will help with fatigue. Make sure you get a bone scan to be sure you arent suffering from Osteoporosis. MTX can leach folic acid and calcium out of you. Take a super multi. Hugs, Deborah

On 4/26/06, snowdrift52003 <snowdrift52003@...> wrote: I'm thinking of asking my rheumy about Enbrel when I see her next week.I think I need something more than the MTX I've been taking. I'm nervous about infections, though. I've had one cold in 2 years, haven'tmissed a day of work. But my hands and feet hurt and I'm SO tired again.My last X-rays revealed an erosion despite being on MTX. Thoughts about biologic safety? Your own experiences with infection?Sierra

[Guest guest]

They do adjust for body size and usually

start about 3 mg/kg. At your weight that would be 132 mg but as far as I know

it comes in 100 mg vials. Because of your sensitivity and concerns you

should probably insist on only one vial. I weigh a little over twice what

you do and I stated on 3 vials, went up to 7 vials, and recently went down to 6

because I’m well controlled and don’t want to be

overmedicated. My infusions are given in the doctor’s office

and he is available to come in if problems arise. They will take prompt

action if there is any sign of problems, and they monitor vital signs at

regular intervals during the infusion. I am given Benadryl and Tylenol

before an infusion and three times out of 28 infusions I felt light-headed or

nauseated when the infusion was too fast or not well mixed. Sometimes I

am a little groggy after the infusion because of the Benadryl but I have had no

other side effects. I hope your infusion goes well. God bless.

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of Kay Simpson

Sent: Wednesday, April 26, 2006

8:18 PM

Rheumatoid Arthritis

Subject: Re:

Remicade

I have Remicade questions. New rheumy has ordered many

tests before first infusion. I am so sensitive to everything... Can

they handle if I should have a terrible reaction? Are the first 3

infusions a smaller dose? I should have asked more questions but I was in

such pain. She gave me a steroid shot in the knee cause my knees

were killing me. Do they adjust dosage to body size for Remicade??

I am very, very small...97 pounds. Anybody feel funny or bad after

infusion???

Thanks in advance,

Kay in La.