Remicade ... Need Support

[Guest guest]

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