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styxgurl
Regular Member


Date Joined Jan 2008
Total Posts : 67
   Posted 1/20/2008 2:06 PM (GMT -7)   
 I start my first remicade treatment tomorrow, anyone know how long it takes to start working? and I am scared of the side effects.......anything I need to do today to get ready for it? thanks all

chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 1/20/2008 2:27 PM (GMT -7)   
Just relax! :) I have been on remicade for over 3 years. I can't say exactly when it started working because I was on 60 mg of pred. when I started. But after I weaned off, I knew it was working. If you don't notice any effects right away, give it time. It can take 5 or so infusions before you start noticing changes. I have not had any side effects from it. Good luck! Let us know how it went.

Ltordo
Regular Member


Date Joined Feb 2007
Total Posts : 33
   Posted 1/20/2008 3:27 PM (GMT -7)   
Remicade starting working the very next day for me.
I was very worried about the side effects as well, but I never had any.
 
I have had 4 treatments so far, and have met quite a few other people
receiving Remicade infusions in the treatment center and no one one
has ever complained about side effects. In fact, most of us
look forward to receiving the infusion now, as it has made our lives
so much better.
 
The worry about the first treatment is worse then the treatment itself.

58 yr old female
Dx with Crohn's-Colitis January 2007
Meds: Remicade, Aciphex


canoehead
Regular Member


Date Joined Jul 2005
Total Posts : 95
   Posted 1/20/2008 3:39 PM (GMT -7)   
Hi styxgurl,

I don't have much to add to what Ltordo and chroniemomx2 have said but I agree with both of them. From the first infusion I felt I had a spring back in my step and zero gut concerns. I am on Remicade as a maintenance drug because of a nasty fistula that came my way about 8 or 9 months after surgery. It seems that the Remicade has banished the fistula to the place that politicians come from and I have had no further visits from our tunneling friends.

I don't know if all clinics are the same but in addition to the Remicade I am given a steroid before the infusion; the only side effect is a restless night because of the steroid. But, hey, I'll take it!

Make sure you bring something to do while at the clinic; books, iPod, balance your chequebook, whatever.......it can take up to 3 hours until you're sprung.
Rob
Resection in August '06
Prednisone banished to the hot place shortly thereafter


styxgurl
Regular Member


Date Joined Jan 2008
Total Posts : 67
   Posted 1/20/2008 3:46 PM (GMT -7)   
thanks all, do u get shots of premeds before or pills.....hate shots.....lol

Ltordo
Regular Member


Date Joined Feb 2007
Total Posts : 33
   Posted 1/20/2008 4:32 PM (GMT -7)   
They just give me 1 tablet of Claratin before my infusion.

58 yr old female
Dx with Crohn's-Colitis January 2007
Meds: Remicade, Aciphex


styxgurl
Regular Member


Date Joined Jan 2008
Total Posts : 67
   Posted 1/20/2008 4:41 PM (GMT -7)   
thanks......so afraid here!

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 1/20/2008 6:52 PM (GMT -7)   
Hello Styxgurl. Please don't be afraid! You will be with professionals who have dealt with drugs that routinely cause serious reactions -- Remicade is not one of them. (Many cancer drugs are nasty, and some they have to do serious pre-meds days in advance). You may never have a reaction to Remicade.

I had a small reaction last time and they stopped it dead in its tracks with a quick IV benadryl. They stopped the Remicade for a bit and then started it up again. They said I may never have another reaction. My next one is in 3 weeks and they said they will start me with more benadryl and solumedrol (steroid) as a preventaive.

I find drinking a lot of water a day or two in advance almost completely eliminates the mild headache. That really is the only side-effect I get and it only lasts for a couple hours. The next day it is gone. I take it easy the next day but really have no problems.

Let us know how it goes!!

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 1/21/2008 4:20 AM (GMT -7)   
Hi, I have been on Remicade for over 2 years. It could take up to a couple infusions for you to notice anything. Each person is diffrent and how they feel after the infusion.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


climbs
New Member


Date Joined Sep 2007
Total Posts : 18
   Posted 1/23/2008 12:20 PM (GMT -7)   
So how did it go?

styxgurl
Regular Member


Date Joined Jan 2008
Total Posts : 67
   Posted 1/23/2008 12:37 PM (GMT -7)   
It went good, felt alot of joint pain and headaches the day after. Still really sleepy. Can't wait for it to work....still flaring
mad  
 


climbs
New Member


Date Joined Sep 2007
Total Posts : 18
   Posted 1/23/2008 5:34 PM (GMT -7)   
I'm always tired that day, but never enough where I can't drive, and I feel fine the next day. I found that it took a week or two before kicking in, the wore off a week or so before my second dose, which took about a week or two to kick in, so I was having periods where I sat there thinking it wasn't working. Hwoever, the last two doses seem to have worked great and while I'm still pretty regular, it isn't always as pressing, unless of course I put it off.

sweeterthanhoney
Veteran Member


Date Joined Oct 2005
Total Posts : 540
   Posted 1/23/2008 10:16 PM (GMT -7)   
hi styxgurl,

My daughter is on Remicade and she gets a 1 hr saline flush after....that makes a world of a difference on how she does after. Her first 3 loading doses were at a different place, and they only did a 10 minute flush. She couldn't even get out of bed the next day! Now, she has no problems at all!

She also gets Benedryl thru IV now, where as the first place no pre meds at all.
dx: fibromyalgia, IBS-C,Myofacial Pain Syndrome, Chronic Headaches, hypothyroidism,anemia, insomnia,mild depression.
 
Meds:
Clonazapam .25mgs, Oxy IR 2.5-3xs/day 5 mgs at bedtime, Synthroid, Zopiclone, flexeril 
 
Supplements:    professional vit/mineral, magnesium/malic acid, Ester C,
 
Daughter Jerica 17, Dx: Crohn's, amitriptyline 20mgs,   lactaid pills, calcium 1000 mgs/day. Forvia, Remicade [double dose]
 
 Husband with treatment resistant depression   Effexor-450mgs
 
                                     
Jerimiah 29:11                      
 


eljay1066
Veteran Member


Date Joined Jan 2003
Total Posts : 3166
   Posted 1/24/2008 8:50 PM (GMT -7)   
I started to experience relief sometime between my second and third infusion, probably around five weeks or so. I was on it for several years. It stopped working for me, but don't worry, that doesn't happen to everyone. I am very happy for the time that it helped.
Take care. Lois
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