Re: Remicade by ports- good idea??

April 14, 2004

In a message dated 14/04/2004 15:44:41 Central Standard Time,

k.j.choate@... writes:

> Before I reject the idea out of hand, maybe some more rational minds could

> make some suggestions here. Right now I am thinking of asking for another TNF

> drug - like Enbrel or Humira.

>

Hi

It's certainly up to you which medication you use, but I wouldn't be afraid

of a mediport. It would make your life a lot simpler. Less pokes, they can

stay in for years, there is not an opening in the skin when it is not in

use...definitely worth considering. Cary

April 14, 2004

, I can only tell you that Enbrel is working great for me. And I

have become an old hand at giving myself injections. At first, I was

very apprehensive. Sue

On Wednesday, April 14, 2004, at 04:40 PM, k.j.choate@... wrote:

> Before I reject the idea out of hand, maybe some more rational minds

> could make some suggestions here. Right now I am thinking of asking

> for another TNF drug - like Enbrel or Humira.

April 14, 2004

Thanks so much Sue. I think I could probably figure out the injections.

Enbrel was in short supply when I started Remicade so that's why we went with

Remicade. The only thing I would miss is the three hours off from work for the

infusion...sometimes my only vacation - LOL.

Hugs,

> , I can only tell you that Enbrel is working great for me. And I

> have become an old hand at giving myself injections. At first, I was

> very apprehensive. Sue

>

> On Wednesday, April 14, 2004, at 04:40 PM, k.j.choate@... wrote:

> > Before I reject the idea out of hand, maybe some more rational minds

> > could make some suggestions here. Right now I am thinking of asking

> > for another TNF drug - like Enbrel or Humira.

>

April 14, 2004

Hi ,

I am currently on the Humira weekly, and so far it's working fairly

well. I inject myself, and that is something to get use to. I have

talked to others taking the Enbrel, Remicade, and I have heard good

things. You are not over reacting it's hard enough, without extra

worry. I don't know what to tell you, it's something to really think

about. Just know that your in my prayers, and I will be thinking of

you. God Bless You, Tawny

> Have been having success with Remicade but not with starting IV's.

Yesterday it took four pokes and that is a good day...some veins are

scarred and others hard to find because of among other things...10

years or so of prednisone and about a year and a half of IV

infusions. Anyway yesterday they mentioned talking to my doctor about

using a port. It scares the heck out of me... On the one hand, I

understand it would be less painful longterm and certainly more

convenient for both of us. As it is, I don't like the thought of

pushing toxins in my bod every eight weeks let alone...now pushing

them into my vena cava. I could see it if it meant living or dying

and see the use with chemo BUT... . The nurse explained it is often

done with Remicade and that it would allow the veins to rest and heal

( can that happen?) and then it would be less dangerous if I were to

be hospitalized for something else on an emergency basis. Does this

make sense.

>

> Am I overreacting? My life is pretty overwhelming right now as it

is...this is not helping. I was so discouraged yesterday when I went

home...I was glad my mom had not tagged along because I know it would

have upset her.

>

> Before I reject the idea out of hand, maybe some more rational

minds could make some suggestions here. Right now I am thinking of

asking for another TNF drug - like Enbrel or Humira.

>

April 14, 2004

Thank you so much Cary. I know what you are saying is true. I just have some

baggage where some of this is concerned. I had a friend develop sepsis from a

port. I have had two PEs in my past and the idea of being that close to the

heart frightens me. I dragged my feet initially on the Remicade because I wasn't

wild about infusion...and it has helped and I have had no reactions. Except for

the IV start part, it has been a breeze... The nurse who has suggested it always

has difficulty with my veins...I sometimes want to run when I see her coming.

She is wonderful once it is started. There are two other nurses there who don't

seem to have as much difficulty. I will talk over with my docs too but I wanted

to talk it over with some people who have experienced haveing to make these

decisions first hand.

Hug,

> In a message dated 14/04/2004 15:44:41 Central Standard Time,

> k.j.choate@... writes:

>

> > Before I reject the idea out of hand, maybe some more rational minds could

> > make some suggestions here. Right now I am thinking of asking for another

TNF

> > drug - like Enbrel or Humira.

> >

>

> Hi

> It's certainly up to you which medication you use, but I wouldn't be afraid

> of a mediport. It would make your life a lot simpler. Less pokes, they can

> stay in for years, there is not an opening in the skin when it is not in

> use...definitely worth considering. Cary

>

April 14, 2004

, I'm voting for trying Enbrel or Humira instead of going with the

port. If there were no good alternatives, it would be a different story.

I'm sure it must be hard to consider switching since Remicade has been

working well for you.

I will be very interested to learn what your physicians say about this.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Remicade by ports- good idea??

> Have been having success with Remicade but not with starting IV's.

Yesterday it took four pokes and that is a good day...some veins are

scarred and others hard to find because of among other things...10 years

or so of prednisone and about a year and a half of IV infusions. Anyway

yesterday they mentioned talking to my doctor about using a port. It

scares the heck out of me... On the one hand, I understand it would be

less painful longterm and certainly more convenient for both of us. As

it is, I don't like the thought of pushing toxins in my bod every eight

weeks let alone...now pushing them into my vena cava. I could see it if

it meant living or dying and see the use with chemo BUT... . The nurse

explained it is often done with Remicade and that it would allow the

veins to rest and heal ( can that happen?) and then it would be less

dangerous if I were to be hospitalized for something else on an

emergency basis. Does this make sense.

>

> Am I overreacting? My life is pretty overwhelming right now as it

is...this is not helping. I was so discouraged yesterday when I went

home...I was glad my mom had not tagged along because I know it would

have upset her.

>

> Before I reject the idea out of hand, maybe some more rational minds

could make some suggestions here. Right now I am thinking of asking for

another TNF drug - like Enbrel or Humira.

>

April 15, 2004

,

I don¹t think you are overreacting at all. I¹d have the same concerns that

you have. I would worry about the increased risk of infection. If you had

no choice, the risks are worth taking since you get such relief from

Remicade. I would think since you do well with Remicade, you would also do

well with Enbrel or Humira.

a

> Have been having success with Remicade but not with starting IV's. Yesterday

> it took four pokes and that is a good day...some veins are scarred and others

> hard to find because of among other things...10 years or so of prednisone and

> about a year and a half of IV infusions. Anyway yesterday they mentioned

> talking to my doctor about using a port. It scares the heck out of me... On

> the one hand, I understand it would be less painful longterm and certainly

> more convenient for both of us. As it is, I don't like the thought of pushing

> toxins in my bod every eight weeks let alone...now pushing them into my vena

> cava. I could see it if it meant living or dying and see the use with chemo

> BUT... . The nurse explained it is often done with Remicade and that it would

> allow the veins to rest and heal ( can that happen?) and then it would be less

> dangerous if I were to be hospitalized for something else on an emergency

> basis. Does this make sense.

>

> Am I overreacting? My life is pretty overwhelming right now as it is...this is

> not helping. I was so discouraged yesterday when I went home...I was glad my

> mom had not tagged along because I know it would have upset her.

>

> Before I reject the idea out of hand, maybe some more rational minds could

> make some suggestions here. Right now I am thinking of asking for another TNF

> drug - like Enbrel or Humira.

>

April 16, 2004

,

I don't have a port although it has been suggested to me also.

However, I do have a PIC line. I am currently needing to take IV meds

four times a day. The only real care a PIC line requires on a daily

basis is to be flushed which is a very simple task.

I have a home health nurse that does blood draws through my PIC twice

a week. She also changes the PIC line dressing once a week. I would

not be able to do the dressing changes on my own. My pic line is on

the inside of my upper arm.

A port requires " less maintenance " and I haven't ruled that out

completely. I'm just a bit hesitant because I'm an extremely high

surgical risk. For now the PIC line serves me well. Has a pic line

been suggested to you?

Good luck in making your decision. If you have any further questions

of me, please feel free to ask. I do have a very difficult time

reading all of the posts each day so would appreciate your sending to

my private email addy as well as the list so I don't miss your

questions.

Elaine in Las Vegas