Steven,

Good for you...glad it's working well! As far as length of time you
should go on Remicade, it pretty much depends on your experience. If
your symptoms get better and no side effects, you could stay on it a
long time (several years). They'll probably do some blood tests every
couple months and see how your liver and other organs are coping with
the drug. Yeah, we all wish that we can get off meds, but since this is
a chronic thing, most doctors will treat you with the drugs as a
maintenance medication, which means for a long time to keep your
symptoms in check. What we need is a CURE for the disease...then we can
get off them.

I didn't know they were treating UC with Remicade. I guess they are
now. Good deal!

Jon

I'll be at the meeting tonight. My parents (in town for a month) will
likely be there too.

-----Original Message-----
From: oc_ccfa@yahoogroups.com [mailto:oc_ccfa@yahoogroups.com] On Behalf
Of Steven Schaefer
Sent: Wednesday, January 18, 2006 11:15 AM
To: oc_ccfa@yahoogroups.com
Subject: [oc_ccfa] Re: remicade help?

I believe that the remicade infusion has helped me. It's wonderful.
Im currently sleeping better and not getting up the multiple times I
was. My bowles are more controllable, which is always nice. Finally
after everything I have tried I think I may have found the solution.
I go in on the 24th for my second infusion which im hoping will be
more powerful and just kill the 20% of inflammation I have left. Im
much more happier now. Thanks Jon for letting me know all about the
remicade and what I should watch out for. It gets pretty boring in
there so I just fell asleep and read a book. They didn't weigh me
though like you said they might. My question to you is as follows:
How long do you have to stay on this for? Ever sinced Ive been
diagnosed with UC i have been on meds. I want to take nothing once I
know im doing well inside. hope the meeting turns out well like last
time and see you all at the next one.

Steven Schaefer
--- In oc_ccfa@yahoogroups.com, "Wagner, Jon" <jon.wagner@w...>
wrote:
>
> Hi Steven,
>
> Good luck on Tuesday with Remicade. I've been on it for 1 year
now.
> Casey described it very well. It's about a 2-3 hour infusion
process.
> You may be going to an infusion center like Casey is describing or
a
> doctor's office. Either way, they'll put it into you through an
IV --
> it's actually a mixture of Remicade and a saline solution. They
weigh
> you and give you a remicade dosage proportional to your weight.
Then it
> gets infused into you, they probably will monitor to you to make
sure
> you are tolerating it, and you can probably watch a movie or TV
during
> the procedure. When it's over, you just walk out and drive home.
>
> Other tips: I actually take Benedryl and Tylanol prior to the
infustion
> to help reduce the chance of an allergic reaction (and the Tylanol
helps
> with the needle pain going in too :-). I'm not sure if your doctor
> thinks you should do this as well. Some people get a shot of
Benedryl
> beforehand for the same reason, though I just take the pill 1/2
hour
> beforehand. Also, go to the bathroom right before it starts, if
> possible. It's hard (but not impossible) to go when you've got
the IV
> in you. And you may want to bring a book, newspaper, or portable
> computer game for entertainment.
>
> I assume you are already on 6mp or methotrexate. They usually
want you
> on that to reduce the chance of a reaction to the Remicade. If
> everything goes well, they'll probably give you another one in 2
weeks,
> then 4, then 6-8 weeks thereafter. Sometimes the insurance might
be
> resistant to cover it because of the expense, so be sure that it's
> approved. If the doctor writes the remicade prescription for IBD,
the
> insurance should cover it OK, minus a deductable perhaps.
>
> You'll probably see some improvement within the first week, if it
works.
> Let us know how it goes...good luck!
>
> -----Original Message-----
> From: oc_ccfa@yahoogroups.com [mailto:oc_ccfa@yahoogroups.com] On
Behalf
> Of Casey Smith
> Sent: Sunday, January 08, 2006 9:18 PM
> To: oc_ccfa@yahoogroups.com
> Subject: Re: [oc_ccfa] remicade help?
>
> Hi Steven
>
> I've had many Remicade infusions, I ended up being
> allergic to it, drastically by the 6th infusion, I
> believe, but it truly worked for me. You will be
> given an IV, then they start a 3 hour drip into the IV
> and speed up the drip as time progresses. They will
> monitor you closely, for allergic reaction, blood
> pressure, fever, etc. I watched tv during those long
> 3 hours! If you are on 6mp you shouldn't have an
> allergic reaction, I wasn't taking 6mp!
>
> It should truly help your inflammation, but I think it
> may take a little time to get the full effect, though
> you should get some immediate relief within the first
> few days. Some people get immediate relief within
> hours, I think it took a week or two for me to notice
> it, but after that I could eat whatever I wanted until
> the dose wore off about 3-6 weeks later. I'd barely
> make it till my next infusion!
>
> I had the infusions done at a Kaiser Infusion Center
> in Anaheim Hills and there were alot of chemo patients
> getting infusions with me so I felt very blessed to be
> getting Remicade and not chemotherapy!
>
> Just email me with any questions,
>
> Blessings,
> Casey Smith
>
> --- Steven Schaefer <strikemecold@y...> wrote:
>
> > first off I would like to say that the last meeting
> > was nice and it
> > was a pleasure to meet people who are kind of going
> > through the same
> > things i am.
> >
> > my symptoms have not been any better since my flare
> > up in the
> > summer. prednisone, and all these other meds just
> > seem not to work
> > but for some odd reason i just can't sleep through
> > the night. so
> > tuesday i am going in for this remicade thing. can
> > someone just
> > explain to me what it actually does and if so does
> > it help right
> > away. i would just like once to lay my head down and
> > not wake up
> > until the morning time to go to the bathroom,
> > problems would be
> > solved in my book if that could happen.
> >
> > i only have my rectum left and 20% of it is
> > inflammed, it's hard cuz
> > i don't see what is so hard to treat about that. any
> > help would be
> > great and how often do i do this remicade thing.
> > can't attend the
> > next meeting but i plan to attend more in the
> > future. any help would
> > be awesome. thanks.
> >
> > steven schaefer
> >
> >
> >
> >
>
>
> Love, and Blesings,
> Casey Smith
>
>
> "Those who hope in the Lord will renew their strength. They will
soar
> on wings like eagles; they will run and not grow weary, they will
walk
> and not be faint" Isaiah 40:31
>
>
>
> __________________________________________
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