Re: Remicade -I'm scared

[Guest guest]

My mother read a study that found that people with autoimmune diseases like

pa have a 1% higher chance of having lymphoma and it is not related to taking

meds like enbril and remacade. It comes with the territory of having the

disease. She has pa and fm and is always reading newsletters, etc. My best

friend

has had 2 infusions so far and has had no side effects. They may put

benedril in your IV so keep that in mind if it makes you tired. so far her p is

fading but no change with pa. It can take up to 4 though. Don't be scared.

We'll all be with you in spirit.

[Guest guest]

--- pfried520 <Pfried520@...> wrote:

> I just got the approval for remicade and my first

> infusion is Dec 30th.

Hi, Pat!

Looks like you and I will be going through this at

about the same time. I get my first dose this

Wednesday, 12/22.

I'm nervous too. From what I've read, Remicade has

been flagged for its potential side effects related to

blood disorders and lymphoma, and for increasing

chances of infection. That concerns me, but I'm

willing to give it a go. But that doesn't stop me from

asking myself at least once a day -- do I really want

to do this?

What pushed me over the edge, along with the constant

frustration of PA, are comments by my friends: Just

when I think I'm having a good, low-pain day, someone

says something like, " You're limping more than usual

today. Are you okay? " <sigh>

I had a long chat with a co-worker who has PA and has

used Remicade for over 2 years. It works wonders for

him, and he's never experienced any disturbing side

effects. His joints are much improved and he has a

spring in his step, but after 2 years he's getting a

few scales again. We work in a IT training school, and

his wife runs a daycare in their home, but with

common-sense cleanliness, frequent handwashing, and

alcohol gel santizer, he stays healthy. In fact, I've

never seen him miss work for illness.

He gave me three pieces of advice:

1) be fully hydrated before and after the treatment to

help plump up your veins, and avoid caffeine and other

diuretics that day.

2) don't make any plans for the remainder of your

treatment day -- expect to be fully exhausted /

fatigued. (Just to be on the safe side, I'm planning

to take the next day off, too -- I'm ALWAYS fatigued

anyway and I have the vacation time available).

3) take something to read. The infusion takes about 2

hours, and they keep you for another hour or two

afterward to make sure you don't have any adverse

reactions.

When I warned the nurse who will be administering my

Remicade that I have small veins, she told me to drink

plenty of water and assured me she uses the smallest

possible needles.

I had a choice between Remicade and Enbrel. I chose

Remicade because I really HATE the idea of

twice-weekly injections with Enbrel (3 years of weekly

allergy shots in both arms will do that to a person).

Also, the full cost of Remicade is supposed to be

covered by my insurance company, rather than the high

pharmacy co-pay with Enbrel.

Good luck, Pat! I'll keep you posted on my experience

so you'll have more information before you go in. If

you learn anything new, please post it, too.

Hang in there!

--

=====

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

Stein

www.noblefusion.com/astein

If you're tired of fighting battles with yourself

If you want to be somebody else

Change your mind...

-- Sister Hazel

__________________________________________________

[Guest guest]

Hi Pat,

I loved remicade. It has been my favorite after 37 years. The side

affects can be scary all right. good to keep watch for them.

I actually had fewer infections than I did when taking MTX. Once I

went for a treatment and just felt a little under the weather which

is pretty normal for me...they found a slightly elevated temperature

and sent me home. Seems the tuburcolosis problem is almost completely

gone since they started testing for latent TB before giving the med.

They do watch for the congestive heart failure now. I had to stop it

when I got numbness in my feet, hands, and face,,,it can cause some

central nervous system things...when i stopped it my symptoms went

away..apparently that stuff is reversible.

I saw a few people with small ports put in due to their vien trouble.

My viens got worse as the treatmnts progressed...

so...the good news: my skin cleared within 2 weeks. My joint pain

subsided considerably after 3-4 months. I would consider taking it

again if they offered it to me.

Hope this helps you,

Marti

>

> Hi Everyone,

>

> I just got the approval for remicade and my first infusion is Dec

> 30th. My insurance turned down the request for Humira. I am really

> scared about the remicade because what I read so far, it seems

there

> can be quite a few side affects.

>

> Does anyone have any experience with it? I also have terrible veins

> and know they will have a hard time with starting the infusion, but

> that is the least of my worries. It says that the FDA put a black

box

> label on it, because it can have bad side effects some leading to

> death.

>

> My problem is I have to try it because the enbrel stopped working

and

> I am in the middle of SSD application and don't want it to look

like

> I am going against treatment. I know when you research meds all the

> bad stuff pops out at you. So I am trying to keep a postitive open

> mind. I know it can help alot with both the PA and P. It is just

> scary because of the risk of infection and cardiac problems.

>

> Anyway, if anyone is on Remicade please let me know your experience.

>

> Thanks

> Pat

[Guest guest]

Hi and Pat,

Just a small note to wish you luck and let you know, I have been on Remicade and

it is amazing the difference it has made for me ~ and within such a short time.

I had no real side effects except the tiredness ~ sometimes more than others,

but once you've done the inital cycle (infusion at week 0, week 2, and then week

6 ~ the impact is once every 6 to 8 weeks), so it's not bad at all. I had a

treatment two weeks ago and felt no tiredness, but in the past I usually do...

I too plan on three hours, bring lots to read (although usually I end up

chatting with the nurses or trying to sleep). They will make you read this long

list of possible side effects, this is newish and required by the drug company,

but the list is nothing you haven't already heard of...

Eventhough I wish I didn't have to take it (or the mtx) as I know they increase

my likliehood of infections or illness, the truth is I have not been sick even

once while taking the treatments and I'm just doing the common sense stuff like

staying away from sick people, washing my hands (but not obsesively), taking

vitiams and trying to get enough sleep... Stuff I don't normally do when NOT on

the drug ~ hmmmm....

Anyway, I hope the Remicade works as well for both of you as it did for me. It

has taken me from being unable to walk to walking again in less than two days.

Best wishes,

[Guest guest]

Hi ,

Thanks for your response and please do let me know how you

do. I will be thinking of you on the 22. Also thank you for the tips

your co worker gave you. I didn't know I should drink more and avoid

caffeine that day. I am so glad you shared that with me.

Please keep me posted, and I agree I won't miss the twice weekly

injections of enbrel. I hope we all get the spring back in our step

in 2005!

Gentle Hugs

Pat

> > I just got the approval for remicade and my first

> > infusion is Dec 30th.

>

>

> Hi, Pat!

>

> Looks like you and I will be going through this at

> about the same time. I get my first dose this

> Wednesday, 12/22.

>

>

[Guest guest]

Oh, I forgot to add that if you are nervous about the needle going into your

hand for the IV, the hospital where I get the infusion actually gives a shot of

Lidicain (sp?) first to numb your hand and then they put the infusion needle in.

The numbing shot stings a little bit, but you feel nothing at all when they put

the IV needle in...

Best Wishes,

[Guest guest]

Thank You for sharing your friends experiences with us. I am so

glad that she hasn't had any bad effects from it. I am sorry to hear

it hasn't helped the PA yet. I know it does say it can take up to

three or four infusions before you notice a change.

Thanks

Pat

>

> My mother read a study that found that people with autoimmune

diseases like

> pa have a 1% higher chance of having lymphoma and it is not related

to taking

> meds like enbril and remacade. It comes with the territory of

having the

> disease. She has pa and fm and is always reading newsletters,

etc. My best friend

> has had 2 infusions so far and has had no side effects. They may

put

> benedril in your IV so keep that in mind if it makes you tired. so

far her p is

> fading but no change with pa. It can take up to 4 though. Don't

be scared.

> We'll all be with you in spirit.

>

[Guest guest]

Hi ,

Thanks so much for the wonderful positive report. I am glad it is

working so well for you and hope and I have the same good

experience. I am bringing my sister in law with me, because I don't

drive into Dallas. So I guess we will have plenty of time to chat!

Thanks Again

Pat

>

> Hi and Pat,

>

> Just a small note to wish you luck and let you know, I have been on

Remicade and it is amazing the difference it has made for me ~ and

within such a short time. I had no real side effects except the

tiredness ~ sometimes more than others, but once you've done the

inital cycle (infusion at week 0, week 2, and then week 6 ~ the

impact is once every 6 to 8 weeks), so it's not bad at all. I had a

treatment two weeks ago and felt no tiredness, but in the past I

usually do...

>

> I too plan on three hours, bring lots to read (although usually I

end up chatting with the nurses or trying to sleep). They will make

you read this long list of possible side effects, this is newish and

required by the drug company, but the list is nothing you haven't

already heard of...

>

> Eventhough I wish I didn't have to take it (or the mtx) as I know

they increase my likliehood of infections or illness, the truth is I

have not been sick even once while taking the treatments and I'm just

doing the common sense stuff like staying away from sick people,

washing my hands (but not obsesively), taking vitiams and trying to

get enough sleep... Stuff I don't normally do when NOT on the drug ~

hmmmm....

>

> Anyway, I hope the Remicade works as well for both of you as it did

for me. It has taken me from being unable to walk to walking again

in less than two days.

>

> Best wishes,

>

>

>

>

>

>

>

[Guest guest]

Hi Marti,

That's more good news! I am glad you had the positive experience and

I will also see about the port because when I needed an IV the

ambulance people had to put it in my neck. Thank you for sharing your

experience with me. I am starting to feel braver! (Is braver a word?)

Gentle hugs

Pat

>

>

> Hi Pat,

>

> I loved remicade. It has been my favorite after 37 years. The

side

> affects can be scary all right. good to keep watch for them.

> I actually had fewer infections than I did when taking MTX. Once I

> went for a treatment and just felt a little under the weather which

> is pretty normal for me...they found a slightly elevated

temperature

> and sent me home. Seems the tuburcolosis problem is almost

completely

> gone since they started testing for latent TB before giving the

med.

> They do watch for the congestive heart failure now. I had to stop

it

> when I got numbness in my feet, hands, and face,,,it can cause some

> central nervous system things...when i stopped it my symptoms went

> away..apparently that stuff is reversible.

>

> I saw a few people with small ports put in due to their vien

trouble.

> My viens got worse as the treatmnts progressed...

>

> so...the good news: my skin cleared within 2 weeks. My joint pain

> subsided considerably after 3-4 months. I would consider taking it

> again if they offered it to me.

>

> Hope this helps you,

>

> Marti