Re: Remicade Appt

[Guest guest]

YES!!! Tery, I really wish you the best for Thursday. That is very exciting

news.

You are in dire need of some relief. I so hope that you get it. And you have

Remicade experts on hand here to advise you along the way. This is really

great. I do believe that you are doing the right thing and that Remicade is

worth a try.

I'll be thinking of you,

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

From: <tjones500@...>

<RA-Supportegroups>

Sent: Monday, September 18, 2000 2:09 PM

Subject: [ ] Remicade Appt

> After waiting all summer I finally have my first Remicade appt. I go

> Thursday at 1030. I'm so excited and nervous at the same time. I sure

hope

> I'm making the right decision here. Tery - FL

>

[Guest guest]

Jon,

Remicade is an infusion done in a hospital, clinic or some RD's offices.

It's one of two new drugs out (around last Nov). The other is Posboro

Cololum (sp).

We have two people here who both joined while you were away, that are on

Remicade (there maybe more don't remember, sorry). Rainey Sue has done

wonderful on it. After years with JRA she has her life back (those are her

words). Also is on it. I think is on her 3rd or 4th treatment

if I remember right, help .

I mostly lurked when you were around before, but I've tried so many things

and can't seem to find anything to work, so I'm gonna give this a try.

You haven't said (if you did I missed the post) how your RA is doing. Tery -

FL

[Guest guest]

Soooo happy for you Tery........Sure hope this works!!

~ Esther & Carol ~

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

From: <tjones500@...>

<RA-Supportegroups>

Sent: Monday, September 18, 2000 3:09 PM

Subject: [ ] Remicade Appt

>

> After waiting all summer I finally have my first Remicade appt. I go

> Thursday at 1030. I'm so excited and nervous at the same time. I sure

hope

> I'm making the right decision here. Tery - FL

>

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

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

> Change subscription options:

[Guest guest]

?:

Does Remicade come(only) in shot form?

Jon

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

From: Esther & Carol <cheerios@...>

< egroups>

Sent: Monday, September 18, 2000 4:43 PM

Subject: Re: [ ] Remicade Appt

>

> Soooo happy for you Tery........Sure hope this works!!

>

> ~ Esther & Carol ~

>

>

> ----- Original Message -----

> From: <tjones500@...>

> <RA-Supportegroups>

> Sent: Monday, September 18, 2000 3:09 PM

> Subject: [ ] Remicade Appt

>

>

> >

> > After waiting all summer I finally have my first Remicade appt. I go

> > Thursday at 1030. I'm so excited and nervous at the same time. I sure

> hope

> > I'm making the right decision here. Tery - FL

> >

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

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

> > Change subscription options:

>

>

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

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

> Change subscription options:

>

>

[Guest guest]

Hi Jon,

Remicade is done by I V, It takes about 3 hours. I just had my second

treatment on Thursday. Rainy Sue has been having it done since March.

----------

> From: Jon <apex@...>

> egroups

> Subject: Re: [ ] Remicade Appt

> Date: Monday, September 18, 2000 4:47 PM

>

>

> ?:

>

> Does Remicade come(only) in shot form?

>

>

> Jon

>

>

> ----- Original Message -----

> From: Esther & Carol <cheerios@...>

> < egroups>

> Sent: Monday, September 18, 2000 4:43 PM

> Subject: Re: [ ] Remicade Appt

>

>

> >

> > Soooo happy for you Tery........Sure hope this works!!

> >

> > ~ Esther & Carol ~

> >

> >

> > ----- Original Message -----

> > From: <tjones500@...>

> > <RA-Supportegroups>

> > Sent: Monday, September 18, 2000 3:09 PM

> > Subject: [ ] Remicade Appt

> >

> >

> > >

> > > After waiting all summer I finally have my first Remicade appt. I go

> > > Thursday at 1030. I'm so excited and nervous at the same time. I

sure

> > hope

> > > I'm making the right decision here. Tery - FL

> > >

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

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

> > > Change subscription options:

> >

> >

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

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

> > Change subscription options:

> >

> >

>

>

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

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

> Change subscription options:

[Guest guest]

Hi Tery,

Good Luck with the remicade treatments. When you go bring a book or head

set with you. It can get boring. I bring my books from school. I think

you have made the right decision, it is definitely worth a try.

----------

> From: tjones500@...

> RA-Supportegroups

> Subject: [ ] Remicade Appt

> Date: Monday, September 18, 2000 3:09 PM

>

>

> After waiting all summer I finally have my first Remicade appt. I go

> Thursday at 1030. I'm so excited and nervous at the same time. I sure

hope

> I'm making the right decision here. Tery - FL

>

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

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

> Change subscription options:

[Guest guest]

Hi,

haven't posted for a LONG time. Tried enbrel but had to go off cuz' of mondo

headaches and high blood pressure. tried it again and same thing, so I have

my first remicade appt on the 26th, got the call today. Hands are severly

effected with this recent flare, so will go back to lurking. I have been on

no meds again for the last 4-5 weeks. Will try to post again soon

Barbara

dx '92 RA

MTX 2yrs 2/98- 3/00

Arava twice 2/00 & 6/00(Liver enzms. still in 100's)

Enbrel 4 shots 8/00

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

From: tjones500@... <tjones500@...>

RA-Supportegroups <RA-Supportegroups>

Date: Monday, September 18, 2000 12:15 PM

Subject: [ ] Remicade Appt

>

>After waiting all summer I finally have my first Remicade appt. I go

>Thursday at 1030. I'm so excited and nervous at the same time. I sure

hope

>I'm making the right decision here. Tery - FL

>

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

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

>Change subscription options:

>

>

[Guest guest]

Hi Tery,

I just had my second treatment last Thursday. At this point I have

noticed much less stiffness in the morning than before. Also, I seem to be

able to get up steps easier. I am in less pain, I had expected dramatic

results but that doesn't seem to have happened. The nurses told me, that I

may not feel a lot until after the third treatment. I have to call them

today, so I will let you know what they say. I do plan on staying with it

though. It is nice not being so stiff in the morning.

Have a good day.

----------

> From: tjones500@...

> egroups

> Subject: Re: [ ] Remicade Appt

> Date: Monday, September 18, 2000 7:47 PM

>

>

> Jon,

> Remicade is an infusion done in a hospital, clinic or some RD's offices.

> It's one of two new drugs out (around last Nov). The other is Posboro

> Cololum (sp).

>

> We have two people here who both joined while you were away, that are on

> Remicade (there maybe more don't remember, sorry). Rainey Sue has done

> wonderful on it. After years with JRA she has her life back (those are

her

> words). Also is on it. I think is on her 3rd or 4th

treatment

> if I remember right, help .

>

> I mostly lurked when you were around before, but I've tried so many

things

> and can't seem to find anything to work, so I'm gonna give this a try.

>

> You haven't said (if you did I missed the post) how your RA is doing.

Tery -

> FL

>

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

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

> Change subscription options:

[Guest guest]

Hi Jon:

I have been on MTX what seems forever. It was doing horrible things to my

intestines so they switched me to injections which solved the problems. It

is not at all hard to do. I thought I could never inject myself but I am and

I don't even feel it. Think about that as a solution. Talk to your dr. I

have known of many others who also inject for the same reason and have found

relief. Just a suggestion.

Jeannette

[Guest guest]

Jon,

Honest, you do not even feel it. You pinch together a clump of fatty tissue

and skin and cannot even feel the needle going in. I use a 30 gauge needle

like the one used for insulin. After you get by the first time, it is easy

easy easy. The nurse has a teaching session with you and at that time you do

your first poke. After that it is a breeze. My husband went with me so he

know how to do it but has never had to give me the shot. He is much more

scared about giving me the shot. How much MTX are you taking? I am at 3/10

injection or 7.5mg. They had to drop me from 12.5mg. because of liver

enzymes elevating but I am still doing good.

Anyway, give the injection a try. I assure you that it is not hard and maybe

will help your stomach alot. It did mine.

Jeannette

[Guest guest]

Just when I (naively) think that my RA is " licked " , it reminds me that it

isn't.

However, I have had an incredible 'run' of good days that have turned into

weeks and now into months on MTX, but it's been costly, as I have probably

the most wrecked up GI system this side of a used car junkyard.

Daily exercise and 2-3x weekly swimming helps matters a great deal. Walking

is the best thing, though, as you have to keep dem joints jumpin'!

I do, however, pop 2 Celebrexes a day, and 4 Azulfidenes(and a Partridge In

A Pear Tree...), which may me lousing up a clear-headed view on whether or

not MTX is my magic bullet. I suspect that it is, though, because I took

those two other meds before I started on Methotrexate, and I was doing very

poorly.

I guess I have migrated from naively trying to find The Magic Bullet, or a

cure, towards finding the most efficacious and effective medicine WITHOUT

SIDE EFFECTS.

The search: Continues.

Be well,

Jon

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

From: <tjones500@...>

< egroups>

Sent: Monday, September 18, 2000 7:47 PM

Subject: Re: [ ] Remicade Appt

>

> Jon,

> Remicade is an infusion done in a hospital, clinic or some RD's offices.

> It's one of two new drugs out (around last Nov). The other is Posboro

> Cololum (sp).

>

> We have two people here who both joined while you were away, that are on

> Remicade (there maybe more don't remember, sorry). Rainey Sue has done

> wonderful on it. After years with JRA she has her life back (those are

her

> words). Also is on it. I think is on her 3rd or 4th

treatment

> if I remember right, help .

>

> I mostly lurked when you were around before, but I've tried so many things

> and can't seem to find anything to work, so I'm gonna give this a try.

>

> You haven't said (if you did I missed the post) how your RA is doing.

Tery -

> FL

>

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

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

> Change subscription options:

>

>

[Guest guest]

In a message dated 9/19/00 10:50:23 AM Central Daylight Time,

triskelion@... writes:

<<

I'll bet my GI tract messup beats yours! *g* Ain't MTX wonderful

Jenna

>>

Try the injection................it sure beats feeling sick!!! Jeannette

[Guest guest]

Hi Barbara:

I don't know you and you probably don't know me. I have kind of been off for

awhile but I read from 's note about your HBP and headaches. I have had

HBP since about 1985 and I can always tell when it is up by headaches and

feeling wired out. I have been taking vasoretic since then and it really

helps keep it down unless I am under alot of stress or I am sick. Are you on

HBP meds? Pain can also cause your BP to elevate. Wishing you luck.

Jeannette

[Guest guest]

Fortunately, my M.D. is only a few minutes from my office, so I go there for

the shots. Somehow some ay my ordinarily rigid to the max insurance co.

picks up the billing for the shots. There is NO WAY that I could do this

myself, I have said, but if I could not get anyone else to do it, I'd have

to just, just LEARN it and DO IT. Besides, I'd probably spill have of the

solution all over the place anyway on its way from vial to needle.

In Bio in High School we had to do that prick your finger/take your blood

type drill, and I did it, and had to run to the washroom whereby I promptly

threw up.

I wasn;t alone, so I withstood the wiseks made upon my return.

Jon, Last Of The Original Pain Wimps

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

From: <ednettieolson@...>

< egroups>

Sent: Tuesday, September 19, 2000 11:11 AM

Subject: Re: [ ] Remicade Appt

>

> Hi Jon:

>

> I have been on MTX what seems forever. It was doing horrible things to my

> intestines so they switched me to injections which solved the problems.

It

> is not at all hard to do. I thought I could never inject myself but I am

and

> I don't even feel it. Think about that as a solution. Talk to your dr.

I

> have known of many others who also inject for the same reason and have

found

> relief. Just a suggestion.

>

> Jeannette

>

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

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

> Change subscription options:

>

>

[Guest guest]

I'll bet my GI tract messup beats yours! *g* Ain't MTX wonderful

Jenna

FREE SPIRIT - Starlight Writers Publications

THE GUARDIANS OF GLEDE - SWP Editors Choice Award; SWP Stellar Award;

WordWeaving Award of Excellance

THE GREEN PUMPKIN - CrossroadsPub.com; furt Award Nominee

Homepage: www.geocities.com/jennakayfrancis

________________________________________________________________

YOU'RE PAYING TOO MUCH FOR THE INTERNET!

Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

http://dl.www.juno.com/get/tagj.

[Guest guest]

Barbara,

Sorry about the high blood pressure and the severe headaches and that you

had to discontinue Enbrel. Hoping for success with Remicade for you!

Check in when you can. We'd all like to know how you are doing.

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

From: " Kendall " <bbkendall@...>

< egroups>

Sent: Tuesday, September 19, 2000 12:17 AM

Subject: Re: [ ] Remicade Appt

> Hi,

> haven't posted for a LONG time. Tried enbrel but had to go off cuz' of

mondo

> headaches and high blood pressure. tried it again and same thing, so I

have

> my first remicade appt on the 26th, got the call today. Hands are severly

> effected with this recent flare, so will go back to lurking. I have been

on

> no meds again for the last 4-5 weeks. Will try to post again soon

> Barbara

> dx '92 RA

> MTX 2yrs 2/98- 3/00

> Arava twice 2/00 & 6/00(Liver enzms. still in 100's)

> Enbrel 4 shots 8/00

[Guest guest]

Hi Barb:

Good luck tomorrow with your Remicade and you don't need to be on Remicade to

be involved in this group.......I am not.......I am an MTX, Prednisone person

myself. It is like having your own brand of cigarettes!!!!! LOLOLOL

Jeannette

[Guest guest]

Hi all,

Still in a really bad flare, need to save my hands for the important

stuff....dishes, dinner laundry , YA RIGHT!! No really, I home school my

7th grader and that's my priority, I save my fingers for schooling. Sorry.

Anyway, my 1st remicade appt is tomorrow, the nurse called and said that

they will give me benadryl first, they do with everyone. Apparently there

has been problems with people getting really itchy after the infusion

starts. She said I'm am the 6th patient so far to receive it. I'll see

tomorrow if I'm the youngest (37) I pray this is my miracle drug cuz' I

would really like to be more involved with this wonderful group.

I'll let youknow how it goes tomorrow, or maybe Wednesday, benadryl always

knocks me out

Barb

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

From: a <aA@...>

egroups < egroups>

Date: Saturday, September 23, 2000 8:20 PM

Subject: Re: [ ] Remicade Appt

>

>Barbara,

>I'm sorry you couldn't tolerate Enbrel.

>I hope you have good luck with Remicade.

>

>a

>

>----- Original Message -----

>From: Kendall <bbkendall@...>

>< egroups>

>Sent: Tuesday, September 19, 2000 1:17 AM

>Subject: Re: [ ] Remicade Appt

>

>

>>

>> Hi,

>> haven't posted for a LONG time. Tried enbrel but had to go off cuz' of

>mondo

>> headaches and high blood pressure. tried it again and same thing, so I

>have

>> my first remicade appt on the 26th, got the call today. Hands are severly

>> effected with this recent flare, so will go back to lurking. I have been

>on

>> no meds again for the last 4-5 weeks. Will try to post again soon

>> Barbara

>> dx '92 RA

>> MTX 2yrs 2/98- 3/00

>> Arava twice 2/00 & 6/00(Liver enzms. still in 100's)

>> Enbrel 4 shots 8/00

>

>

>

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

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

>Change subscription options:

>

>

[Guest guest]

Best of lucky to you tomorrow Barb! Sure hope you can get as good of

results like Rainy Sue

~Esther & Carol~

''To get out of a difficulty, one

usually must go through it.''

" Never look down on anybody

unless you are helping them up. "

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

From: Kendall <bbkendall@...>

< egroups>

Sent: Monday, September 25, 2000 8:49 PM

Subject: Re: [ ] Remicade Appt

> Hi all,

> Still in a really bad flare, need to save my hands for the important

> stuff....dishes, dinner laundry , YA RIGHT!! No really, I home school

my

> 7th grader and that's my priority, I save my fingers for schooling. Sorry.

>

> Anyway, my 1st remicade appt is tomorrow, the nurse called and said that

> they will give me benadryl first, they do with everyone. Apparently there

> has been problems with people getting really itchy after the infusion

> starts. She said I'm am the 6th patient so far to receive it. I'll see

> tomorrow if I'm the youngest (37) I pray this is my miracle drug cuz' I

> would really like to be more involved with this wonderful group.

>

> I'll let youknow how it goes tomorrow, or maybe Wednesday, benadryl always

> knocks me out

> Barb

> -----Original Message-----

> From: a <aA@...>

> egroups < egroups>

> Date: Saturday, September 23, 2000 8:20 PM

> Subject: Re: [ ] Remicade Appt

>

>

> >

> >Barbara,

> >I'm sorry you couldn't tolerate Enbrel.

> >I hope you have good luck with Remicade.

> >

> >a

> >

> >----- Original Message -----

> >From: Kendall <bbkendall@...>

> >< egroups>

> >Sent: Tuesday, September 19, 2000 1:17 AM

> >Subject: Re: [ ] Remicade Appt

> >

> >

> >>

> >> Hi,

> >> haven't posted for a LONG time. Tried enbrel but had to go off cuz' of

> >mondo

> >> headaches and high blood pressure. tried it again and same thing, so I

> >have

> >> my first remicade appt on the 26th, got the call today. Hands are

severly

> >> effected with this recent flare, so will go back to lurking. I have

been

> >on

> >> no meds again for the last 4-5 weeks. Will try to post again soon

> >> Barbara

> >> dx '92 RA

> >> MTX 2yrs 2/98- 3/00

> >> Arava twice 2/00 & 6/00(Liver enzms. still in 100's)

> >> Enbrel 4 shots 8/00

> >

> >

> >

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

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

> >Change subscription options:

> >

> >

>

>

>

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

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

> Change subscription options:

[Guest guest]

Barbara,

Glad everything went good with your first infusion. I go on 5 Oct for my

second one. I too was very disappointed after my first one because I didn't

feel a thing. Today makes 7 days and I still feel nothing at all. I know it

is supposed to take up to 3 before you feel the effects, but most people on

the " net " have felt a difference within the first 24 to 48 hours, so I was a

let down. I keep telling myself not to give up yet, I've still got at least

2 more to go.

My next RD appt is 4 days after my 2nd infusion and I'm going to talk to him

about " what if " . I want to go ahead and start planning what I'm going to try

next.

Did you by chance try Enbrel before Remicade? Hope your feeling better soon.

Tery - FL

[Guest guest]

Tery,

Yes I tried Enbrel. It gave me mondo headaches and high BP. I went off it

'til it all went away, went back on Enbrel and same thing happened. So,

remicade is my hope. I cannot take MTX or Arava anymore because of liver.

Arava really messed it up.

My RD said he will come in and see me during my next infusion. I will be off

the prednisone by then so will be able to gauge things a little more

accurately. I HATE being on prednisone. My face has rounded out already (2

1/2 weeks) and I'm all puffy! I am discouarged cuz' I was able to keep off

the 20lbs I lost in March/April (because of Arava, the only good side effect

in my opinion, he he) until now. I gained 7lbs in one week. I know it's

partly my fault, I've been eating more, but the dang pred just makes me so

hungry. <GRRRR> I've decided to try and eliminate as much sugar and white

flour products as I can and see if this helps. I have heard that people with

RA do well on the Atkins diet. Anyonw else hear this?

I hope you get some relief soon, keep us posted on your results, I'm all

ears:)

Barb

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

From: tjones500@... <tjones500@...>

egroups < egroups>

Date: Thursday, September 28, 2000 10:21 AM

Subject: Re: [ ] Remicade appt

>Barbara,

>Glad everything went good with your first infusion. I go on 5 Oct for my

>second one. I too was very disappointed after my first one because I

didn't

>feel a thing. Today makes 7 days and I still feel nothing at all. I know

it

>is supposed to take up to 3 before you feel the effects, but most people on

>the " net " have felt a difference within the first 24 to 48 hours, so I was

a

>let down. I keep telling myself not to give up yet, I've still got at

least

>2 more to go.

>

>My next RD appt is 4 days after my 2nd infusion and I'm going to talk to

him

>about " what if " . I want to go ahead and start planning what I'm going to

try

>next.

>

>Did you by chance try Enbrel before Remicade? Hope your feeling better

soon.

> Tery - FL

>

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

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

>Change subscription options:

>

>

[Guest guest]

Sorry that you still don't notice any effect from the Remicade, Tery! Please

don't lose hope. It could just take more time for you.

Wishing you better days,

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

From: <tjones500@...>

< egroups>

Sent: Saturday, October 07, 2000 9:47 AM

Subject: Re: [ ] Remicade appt

> Rainy Sue,

> I had my second infusion and still nothing. Matter of fact yesterday was

> pure hell. We had training day at work and you have to be dead to miss

it

> or I would have called in sick. At least it was a light day. I got to

sleep

> in today so I'm not sure how I feel yet today. Just the normal morning

> stiffness so far. Thanks for asking. Tery - FL