Re: Remicade ... Need Support

June 16, 2006

In a message dated 6/16/2006 5:52:09 PM Central Standard Time,

kuehnlej@... writes:

Sorry this is so long. I don't want to worry my hubby or kids with

this and yet I feel like I am going to be enveloped by saddness and

fear.

in St. Louis

i am sorry i didnt reply to the earlier post, i've been in and out

of it lately. My doc suggested Remicade to me thursday, but its not an

option. I have 2 young kids and it would be over an hour drive to the hossy

where

they do the infusions plus an hour back...Honestly i would try other meds

before going to the remicade. It seems kinda big time medication to me. I

totally

understand your feelings of being scared to take it. RA is something that is

unfortunately going to be part of our lives forever...Sometimes if you are

lucky enough there can be a remission of sorts.I had one for a couple months

untill my husband died, then i went into a major flare up. worse than i ever

had. thankfully my rheumy understood and gave me some darvocet...may ask for

something stronger tho. I am currently waiting on the pharmacy to deliver my

Enbrel so i can start that along with the 15mg of methotrexate. Prednisone is

finally off my list of meds. I refuse to take it... ok i'm rambling sorry t

ake care hope i could help. HUGS

June 16, 2006

, I don't know why there were no replies, maybe they were busy. I do

know some have been taking Remicade and said it didn't make an immediate

change, but that's all I know. Sorry I can't help more.

Dennis

[ ] Remicade ... Need Support

> Hello,

>

> I posted asking if anyone had used Remicade and how they felt after

> the infusions etc. because I get my first infusion Monday. No one

> responded so maybe no one has taken it, but I am really scared about

> it. I know almost everyone is on one of these drugs or has been and

> many have had bad experiences. I understand it is individual and all

> that. I am just so scared .... don't know exactly why ... I feel like

> I am putting a substance in my body that could later kill me (cancer

> etc)and I don't really know if I will get any good out of it. I think

> maybe the reality of this disease is really hitting me for the first

> time. I know I have the pain and damaged joints and all, but

> sometimes I start to feel good like it is going away. I never think

> of it as something that will always be here now and progressively

> effect my life. I guess I thought of the treatment like rehab for my

> back after surgery or my knee replacement ... pain but leading to an

> end of pain eventually.

> It sounds like everyone here is in a lot of pain most of the time. I

> am too at least the past few months (just diagnosed in Jan). Are

> their people out there who are able to lead their lives fairly

> normally ... that have long term remissions (years or at least

> months)?

> My daughter(age 15) has an immune system disease that causes her to

> need tube feedings and not eat any real foods. I am on a support list

> with other parents ... we find that the parents of kiddos who do well

> gradually leave the list because it isn't the center of their lives

> anymore. Is this list like that? Is there hope of not needing to do a

> joint/pain assessment each morning before I try to stand up?

>

> Sorry this is so long. I don't want to worry my hubby or kids with

> this and yet I feel like I am going to be enveloped by saddness and

> fear.

>

> in St. Louis

June 16, 2006

Hi ,

I think it's helpful to hold on to the idea that a high level of

wellness, if not full recovery, is possible. People do get better and

go into remission; why not you?

Sierra

-- In , " kuehnlej " <kuehnlej@...> wrote:

>

> Hello,

>

> I posted asking if anyone had used Remicade and how they felt after

> the infusions etc. because I get my first infusion Monday. No one

> responded so maybe no one has taken it, but I am really scared

about

> it. I know almost everyone is on one of these drugs or has been and

> many have had bad experiences. I understand it is individual and

all

> that. I am just so scared .... don't know exactly why ... I feel

like

> I am putting a substance in my body that could later kill me

(cancer

> etc)and I don't really know if I will get any good out of it. I

think

> maybe the reality of this disease is really hitting me for the

first

> time. I know I have the pain and damaged joints and all, but

> sometimes I start to feel good like it is going away. I never think

> of it as something that will always be here now and progressively

> effect my life. I guess I thought of the treatment like rehab for

my

> back after surgery or my knee replacement ... pain but leading to

an

> end of pain eventually.

> It sounds like everyone here is in a lot of pain most of the time.

I

> am too at least the past few months (just diagnosed in Jan). Are

> their people out there who are able to lead their lives fairly

> normally ... that have long term remissions (years or at least

> months)?

> My daughter(age 15) has an immune system disease that causes her to

> need tube feedings and not eat any real foods. I am on a support

list

> with other parents ... we find that the parents of kiddos who do

well

> gradually leave the list because it isn't the center of their lives

> anymore. Is this list like that? Is there hope of not needing to do

a

> joint/pain assessment each morning before I try to stand up?

>

> Sorry this is so long. I don't want to worry my hubby or kids with

> this and yet I feel like I am going to be enveloped by saddness and

> fear.

>

> in St. Louis

>

June 16, 2006

You obviously hear more about the bad effects of medicine than the good. It

took my doctor over a year to talk me into Remicade. I got that desperate that

no matter what I heard it had to be better than living in the pain I had.

For me, I had a reaction to it. I won't say what as I don't wish to scare.

However I react to just about everything. There was a lady there who had a

reaction after 18 months but was still able to take it. Most of the people have

no problems with Remicade.

As sad as it is, I usually stick with my philosophy before trying new

drugs...how is my pain and can the reaction be really that much worse than what

I am experiencing now. If RA drugs scare ya, take a gander at multiple

sclerosis drugs. My Hubby is a mild MS patient and doesn't need drugs but when

I read the problems associated with them it really put the RA drugs in a better

class.

Part of it too is admitting that you really need something stronger.

Unfortunately, I have either had reactions or the high cost meds have merely not

worked. Ten years into developing RA and I need urgent bilateral knee

replacements and MIP joint replacements in my right hand. I am 30 years old. I

have gone through a scare of RA involved heart problems. Given the alternative,

the medicines just don't seem as bad anymore.

Shandi

June 16, 2006

,

I am on Enbrel and have very little pain. I've been on it for over two

years and have no adverse side effects. I am able to lead a fairly

normal life. I recently went on a 17-day trip out West that involved

some walking up steep inclines in very high altitudes. My RA behaved

itself, and I didn't have any trouble keeping up with everybody. I did

huff and puff a little at times, but that was probably because I smoked

for over 30 years and have diminished lung capacity as a result.

Hang in there, and hopefully you will get relief with Remicade.

Sue

On Friday, June 16, 2006, at 06:50 PM, kuehnlej wrote:

> It sounds like everyone here is in a lot of pain most of the time. I

> am too at least the past few months (just diagnosed in Jan). Are

> their people out there who are able to lead their lives fairly

> normally ... that have long term remissions (years or at least

> months)?

June 16, 2006

, Sorry no one answered your post immediately. And yes many of us lead

very active and almost normal lives. I was diagnosed 3 years ago with a very

agressive RA as my Doc said based on assessment and labs. I did pretty well on

MTX for a couple of years but then needed to up the dose and could not tolerate

it. I've been on enbrel since the end of January with low dose mtx and am now

cutting out the mtx completely I hope. We just got back from a wonderfru trip

to England and Scotland. I hiked for miles and kept up with everyone wlse. Yes

I do have days where I have some pain and stiffness but over all I lead a very

active life. I do have more fatique than I used to and have had to slow down a

little but I still do more than most peiple I know. I hope the remicade works

well for you and that you feel better quickly. With the enbrel I started

noticing improvement by the end of the first week. in Tennessee

kuehnlej <kuehnlej@...> wrote: Hello,

I posted asking if anyone had used Remicade and how they felt after

the infusions etc. because I get my first infusion Monday. No one

responded so maybe no one has taken it, but I am really scared about

it. I know almost everyone is on one of these drugs or has been and

many have had bad experiences. I understand it is individual and all

that. I am just so scared .... don't know exactly why ... I feel like

I am putting a substance in my body that could later kill me (cancer

etc)and I don't really know if I will get any good out of it. I think

maybe the reality of this disease is really hitting me for the first

time. I know I have the pain and damaged joints and all, but

sometimes I start to feel good like it is going away. I never think

of it as something that will always be here now and progressively

effect my life. I guess I thought of the treatment like rehab for my

back after surgery or my knee replacement ... pain but leading to an

end of pain eventually.

It sounds like everyone here is in a lot of pain most of the time. I

am too at least the past few months (just diagnosed in Jan). Are

their people out there who are able to lead their lives fairly

normally ... that have long term remissions (years or at least

months)?

My daughter(age 15) has an immune system disease that causes her to

need tube feedings and not eat any real foods. I am on a support list

with other parents ... we find that the parents of kiddos who do well

gradually leave the list because it isn't the center of their lives

anymore. Is this list like that? Is there hope of not needing to do a

joint/pain assessment each morning before I try to stand up?

Sorry this is so long. I don't want to worry my hubby or kids with

this and yet I feel like I am going to be enveloped by saddness and

fear.

in St. Louis

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June 19, 2006

HI ,

I haven't been online in a while and I was catching up on my emails and saw

this one regarding Remicade. I just had my first infusion of Remicade almost

two weeks ago and I go for my second one this Thursday. I understand how

you feel about taking the drug. I am in a lot of pain right now and I am

hoping this helps. My nurse who did my first infusion said hopefully I would

see

some results after my third infusion. I hope so because I work full-time and

it has been most difficult to go to work everyday. Past drugs I have been

on are Plaquenil, Methotrixate, Prednisone, Sulfazalzine (sp?)Enbrel, Humira

and now Remicade. I was very allergic to Humira and had to be taken off of

it. Good luck and please stay in touch and let me know how you do.

Hugs,

Wanda in Texas

In a message dated 6/16/2006 5:51:32 P.M. Central Standard Time,

kuehnlej@... writes:

Hello,