Re: Remicade infusions - general questions

[Guest guest]

I have had two infusions of Remicade.

 

Remember that many of the infusion reactions happen fairly quickly (although

they can take longer to develop) so at least you are under a nurse/doctor care

whereas if you have a reaction with Enbrel or Humira you do not have that

available to you.  I did not have a reaction with Enbrel but did with Humira.

 

The infusion process was mindnumbing.  It seemed like it took forever for me.  I

was having breathing issues (probably anxiety) so they slowed the drip and ended

up there over three hours.  I did not have any fatigue or such afterwards,

infact I wanted to dance a jig.  I could actually walk up stairs, fast, like a

normal person.  After two weeks, when the next infusion was due, I was excited

to get it again...they couldn't put it in me fast enough.  I still had the

breathing issues again.  The next morning, after the second infusion I couldn't

move.  It was as if I had been off all my RA meds for weeks!  I wouldn't go back

after that.

 

When I was in there, there was a lady who had been taking it for 18 months.  She

said it wasn't until about a year after starting that she had a reaction....so

keep in mind that reactions can happen at any time.  Most people have no

problems though.

 

Enbrel, I had no reactions, but it just did not control my RA.  Humira gave me

terrible back pains within 5 minutes of injections...it felt like someone was

injecting fluid into my spinal column...lots of pressure.

 

HTH.

Shandi

From: just call me Sheba <queen_o_sheba@...>

Subject: [ ] Remicade infusions - general questions

Date: Thursday, July 31, 2008, 5:17 PM

I have a rheumy appt in a few weeks. I think we are at the point of

selecting a new med - Humira, Enbrel, or Remicade.

While I'm anxious to try something that might be more effective, I'm

also terrified because of a stupid needle-phobia. My dr is leaning

towards Remicade infusions because of this. I've been doing a lot of

reading about all of them. I do keep reading about allergic reactions

to Remicade and people who are wiped out for a few days after the

infusion.

I'd love to hear from anyone that is on Remicade infusions. Your

experience with it? What does the treatment feel like, exactly what

happens, how long does it take, how often do you go for treatments,

what side effects have you experienced, how well has it worked, etc.

Thanks so much for your input and helping this " nervous Nellie " !

Kim

>

> For those of you who have said you feel more pain before your scheduled

> infusion date...

>

> Did this happen right from the start of the infusions, or did it start

> months after your first infusion?

>

> I have never noticed much difference at all after infusions or

before them,

> but I am due for my next infusion this coming Monday, and this past

> week-week and a half I have been in more and more pain each day. Even my

> hands are hurting again, which had gone away pretty much over the past

> months.

>

> The reason I don't know which aches and pains are being effected by the

> Remicade is that I have both RA and osteoarthritis. Everytime I

mention a

> particularly painful spot, the rheumy says that is osteo, or that I have

> both and the Remicade is only helping the RA part.

>

> So, is it possible that though I haven't felt the pain get worse

previously,

> before infusions, that now (my 5th infusion, I think) it has caught

up and

> maybe aren't working as long? I am currently on every 8 weeks for

infusions,

> and weekly I take 4 methotrexate on Sundays, and folic acid everyday.

>

>

>

>

>

>

[Guest guest]

I have had about 5 or 6 infusions and have had no side-effects from them at

all.The iv needle doesn't even hurt because the infusion specialist knows

what he is doing as he does it all day long every day. I just sit in a nice

comfy seat for 1 1/2-2 hours and read or do whatever. The infusion center

has two big screen tvs with movies for us to watch. They give out snacks

sometimes. It is a very relaxing, pleasant experience.

My husband has been on the Remicade infusions for years. He has had times

when he has come home and slept for hours. This usually happens when he gets

the shot of Benadryl because he often has an allergic reaction to the

Remecade and breaks out in hives. I think it is the Benedryl injection that

wipes him out. He is usually ok if he doesn't get the Benadryl.

Also, my husband has always been very difficult with needles. It has always

been very hard to find his veins. But the person who gives the infusions has

no problem at all finding his veins with the IV. I guess it just depends on

the experience of the person giving the infusions.

[ ] Remicade infusions - general questions

I have a rheumy appt in a few weeks. I think we are at the point of

selecting a new med - Humira, Enbrel, or Remicade.

While I'm anxious to try something that might be more effective, I'm

also terrified because of a stupid needle-phobia. My dr is leaning

towards Remicade infusions because of this. I've been doing a lot of

reading about all of them. I do keep reading about allergic reactions

to Remicade and people who are wiped out for a few days after the

infusion.

I'd love to hear from anyone that is on Remicade infusions. Your

experience with it? What does the treatment feel like, exactly what

happens, how long does it take, how often do you go for treatments,

what side effects have you experienced, how well has it worked, etc.

Thanks so much for your input and helping this " nervous Nellie " !

Kim

>

> For those of you who have said you feel more pain before your scheduled

> infusion date...

>

> Did this happen right from the start of the infusions, or did it start

> months after your first infusion?

>

> I have never noticed much difference at all after infusions or

before them,

> but I am due for my next infusion this coming Monday, and this past

> week-week and a half I have been in more and more pain each day. Even my

> hands are hurting again, which had gone away pretty much over the past

> months.

>

> The reason I don't know which aches and pains are being effected by the

> Remicade is that I have both RA and osteoarthritis. Everytime I

mention a

> particularly painful spot, the rheumy says that is osteo, or that I have

> both and the Remicade is only helping the RA part.

>

> So, is it possible that though I haven't felt the pain get worse

previously,

> before infusions, that now (my 5th infusion, I think) it has caught

up and

> maybe aren't working as long? I am currently on every 8 weeks for

infusions,

> and weekly I take 4 methotrexate on Sundays, and folic acid everyday.

>

>

>

>

>

>

[Guest guest]

I was also needle phobic, especially about self injections. But we do

what we have to do. After I had been injecting Enbrel for a few weeks,

I became an old pro at it. I inject into my tummy, and it doesn't hurt.

It hurt at first when I was so tentative at it, but now I just jab the

needle in and feel no pain. Going for infusions would have been very

inconvenient for me, plus I can't take mtx, and you have to on Remicade.

Sue

On Thursday, July 31, 2008, at 05:17 PM, just call me Sheba wrote:

>

> While I'm anxious to try something that might be more effective, I'm

> also terrified because of a stupid needle-phobia. My dr is leaning

> towards Remicade infusions because of this. I've been doing a lot of

> reading about all of them. I do keep reading about allergic reactions

> to Remicade and people who are wiped out for a few days after the

> infusion.

[Guest guest]

Kim,

When I was first diagnosed, I was on remicade and I LOVED it! I never

felt wiped out for a few days afterwards, I was the opposite. I had

to be carefull not to over-do it because I felt soo good. When I

moved from LA to Denver, my new rheumy's didn't want to treat my RA

aggressively has my old rheumy. I have a new rheumy here in town and

I just got approved to get back on it and I am super excited about

it.

You know your body better then any doctor ever will, listen to your

body after your first infusion. I never had any allergic reactions

to it, but people do. I would recommend it...it made a world of

difference for me and I can't wait to get my first infusion. Keep us

updated w/ what treatment you do deceide on. Best of luck.

>

> I have a rheumy appt in a few weeks. I think we are at the point of

> selecting a new med - Humira, Enbrel, or Remicade.

>

> While I'm anxious to try something that might be more effective, I'm

> also terrified because of a stupid needle-phobia. My dr is leaning

> towards Remicade infusions because of this. I've been doing a lot of

> reading about all of them. I do keep reading about allergic

reactions

> to Remicade and people who are wiped out for a few days after the

> infusion.

>

> I'd love to hear from anyone that is on Remicade infusions. Your

> experience with it? What does the treatment feel like, exactly what

> happens, how long does it take, how often do you go for treatments,

> what side effects have you experienced, how well has it worked, etc.

>

> Thanks so much for your input and helping this " nervous Nellie " !

>

> Kim

>

> --- In , " shihtzumom " <shihtzumom1@>

wrote:

> >

> > For those of you who have said you feel more pain before your

scheduled

> > infusion date...

> >

> > Did this happen right from the start of the infusions, or did it

start

> > months after your first infusion?

> >

> > I have never noticed much difference at all after infusions or

> before them,

> > but I am due for my next infusion this coming Monday, and this

past

> > week-week and a half I have been in more and more pain each day.

Even my

> > hands are hurting again, which had gone away pretty much over the

past

> > months.

> >

> > The reason I don't know which aches and pains are being effected

by the

> > Remicade is that I have both RA and osteoarthritis. Everytime I

> mention a

> > particularly painful spot, the rheumy says that is osteo, or that

I have

> > both and the Remicade is only helping the RA part.

> >

> > So, is it possible that though I haven't felt the pain get worse

> previously,

> > before infusions, that now (my 5th infusion, I think) it has

caught

> up and

> > maybe aren't working as long? I am currently on every 8 weeks for

> infusions,

> > and weekly I take 4 methotrexate on Sundays, and folic acid

everyday.

> >

> >

> >

> >

> >

> >

[Guest guest]

Kim, You couldn't be more afraid than I was last July when I started Remicade.

I made my husband go with me for the first two infusions, I was actually in

tears. And what happened, absolutely nothing. I went in, sat in a comfy lounge

chair, the nurse asked a few questions, like if I was ill lately, that kind of

thing, she inserted the needle after asking me where I wanted it, I chose the

back of the hand for mobility. I sat there and read for 2 hours. They may ask

you if you want a blanket because the Remicade is cold as it goes in. That was

it, time up, needle out, see you in 8 weeks. I have heard that some offices

pre-medicate with benedryl but mine doesn't. I went home and that was that.

Actually the first time I went home and took a nap but I think that was because

I barely got any sleep the night before over worrying, the other times I usually

went shopping. Good luck, sometimes these things go just fine. in PA

[ ] Remicade infusions - general questions

I have a rheumy appt in a few weeks. I think we are at the point of

selecting a new med - Humira, Enbrel, or Remicade.

While I'm anxious to try something that might be more effective, I'm

also terrified because of a stupid needle-phobia. My dr is leaning

towards Remicade infusions because of this. I've been doing a lot of

reading about all of them. I do keep reading about allergic reactions

to Remicade and people who are wiped out for a few days after the

infusion.

I'd love to hear from anyone that is on Remicade infusions. Your

experience with it? What does the treatment feel like, exactly what

happens, how long does it take, how often do you go for treatments,

what side effects have you experienced, how well has it worked, etc.

Thanks so much for your input and helping this " nervous Nellie " !

Kim

>

> For those of you who have said you feel more pain before your scheduled

> infusion date...

>

> Did this happen right from the start of the infusions, or did it start

> months after your first infusion?

>

> I have never noticed much difference at all after infusions or

before them,

> but I am due for my next infusion this coming Monday, and this past

> week-week and a half I have been in more and more pain each day. Even my

> hands are hurting again, which had gone away pretty much over the past

> months.

>

> The reason I don't know which aches and pains are being effected by the

> Remicade is that I have both RA and osteoarthritis. Everytime I

mention a

> particularly painful spot, the rheumy says that is osteo, or that I have

> both and the Remicade is only helping the RA part.

>

> So, is it possible that though I haven't felt the pain get worse

previously,

> before infusions, that now (my 5th infusion, I think) it has caught

up and

> maybe aren't working as long? I am currently on every 8 weeks for

infusions,

> and weekly I take 4 methotrexate on Sundays, and folic acid everyday.

>

>

>

>

>

>

[Guest guest]

Shandi and group

Thanks so much for that lengthy explaination of infusions, I was

very curious about them. Now I know if that happens not to panic.

Sad that they can quit helping just as fast as they help. And yes

one may not have a reaction and than later get a reaction.

gengle hugs everyone;

Clora

> I have had two infusions of Remicade.

>  

> Remember that many of the infusion reactions happen fairly quickly

(although they can take longer to develop) so at least you are under

a nurse/doctor care whereas if you have a reaction with Enbrel or

Humira you do not have that available to you.  I did not have a

reaction with Enbrel but did with Humira.

>  

> The infusion process was mindnumbing.  It seemed like it took

forever for me.  I was having breathing issues (probably anxiety) so

they slowed the drip and ended up there over three hours.  I did not

have any fatigue or such afterwards, infact I wanted to dance a

jig.  I could actually walk up stairs, fast, like a normal person. 

After two weeks, when the next infusion was due, I was excited to

get it again...they couldn't put it in me fast enough.  I still had

the breathing issues again.  The next morning, after the second

infusion I couldn't move.  It was as if I had been off all my RA

meds for weeks!  I wouldn't go back after that.

>  

> When I was in there, there was a lady who had been taking it for

18 months.  She said it wasn't until about a year after starting

that she had a reaction....so keep in mind that reactions can happen

at any time.  Most people have no problems though.

>  

> Enbrel, I had no reactions, but it just did not control my RA. 

Humira gave me terrible back pains within 5 minutes of

injections...it felt like someone was injecting fluid into my spinal

column...lots of pressure.

>  

> HTH.

> Shandi

>

[Guest guest]

and Group

I read what everyone says, I am so happy to hear from each and

everyone of you. wow man. that sounds great to hear. I

was wondering how the visit would go if I had to take infusions. I

have no problem with needles. I just don't like a hospital

atmosphere and that dont sound hospitally. And your right the person

that gives these shots been doing it awhile so he/she knows what

they are doing. What a relief to someone that has to do this often.

A tv , snacks wow thats great. I am not worried now. Yes, of course

everyone's expereinces are not the same, but don't sound to bad what

you said. thanks

gentle hugs

Clora

In , " shihtzumom " <shihtzumom1@...> wrote:

>

> I have had about 5 or 6 infusions and have had no side-effects

from them at

> all.The iv needle doesn't even hurt because the infusion

specialist knows

> what he is doing as he does it all day long every day. I just sit

in a nice

> comfy seat for 1 1/2-2 hours and read or do whatever. The infusion

center

> has two big screen tvs with movies for us to watch. They give out

snacks

> sometimes. It is a very relaxing, pleasant experience.

>

> My husband has been on the Remicade infusions for years. He has

had times

> when he has come home and slept for hours. This usually happens

when he gets

> the shot of Benadryl because he often has an allergic reaction to

the

> Remecade and breaks out in hives. I think it is the Benedryl

injection that

> wipes him out. He is usually ok if he doesn't get the Benadryl.

>

> Also, my husband has always been very difficult with needles. It

has always

> been very hard to find his veins. But the person who gives the

infusions has

> no problem at all finding his veins with the IV. I guess it just

depends on

> the experience of the person giving the infusions.

>

>

>