Remicaide (sp)

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crohn's pt mom
Regular Member

Date Joined Nov 2008
Total Posts : 86
   Posted 3/4/2009 3:45 PM (GMT -6)   
My daughter and I just got back from the CR surgeon.  Bad news.  Her abcess is worse. Put her on Cipro, can't tolerate Flagyl.  Next week we see GI to talk about Remecaide.
I know there are a lot of posts out there for this medicine, but could I get some feedback about the dosage or how and in what form Remicide comes in or you take it.  Some of the side effects, etc.
My daughter, B, is very tough but she's really down now.  THe pain is unbearable. Her GI asked me yesterday if we were calling her surgeon every time she had pain - she didn't, I didn't but maybe that's why he was so surprised today that she wasn't better to actually worse.  Talking about going in for surgery again --
I'm gonna talk to B about a second opinion -- it's time.

Aimee =)
Veteran Member

Date Joined Jun 2004
Total Posts : 1020
   Posted 3/4/2009 5:41 PM (GMT -6)   

After my dx, Remicade was the first medication I was given. I went from not having the energy to move, intense pain, and not eating for 2 months to normal within 1 infusion. It was a miracle drug for me. The only side effect I had on it was hair loss - which was not noticeable to anyone but me.

I was on it 2.5 years. At that point, I started to react during the infusion and soon found myself in a flare. GI decided that I had built antibodies to it so my body was rejecting it and it no longer worked. I moved to Humira then, which again was a lifesaver.

I was on it under the care of 3 different GIs. One did it in office - I just sat in a patient room most of the day. One did it in the outpatient area of the local hospital - I was usually in a curtained area with my own TV, chair, etc. The last one did it in office as well. My new GI has patients go to the county health center for the infusion. Just depends on the doc.

The infusion itself was a piece of cake. I did not take premeds, I did homework or watched movies on my laptop, brought food in with me, read magazines, etc. I was fine to drive myself there and back and often returned to work or school.

Mine varied from 4-12 weeks apart, depending upon my health at the time.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 3/4/2009 6:59 PM (GMT -6)   
Hi Gee sounds like your daughter is having a hard go of it. Remicade is good for fistula healing and is well known for it's help in that area..I really hope she gets better soon did he say if she should be admitted? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still gail

Regular Member

Date Joined Jan 2009
Total Posts : 209
   Posted 3/4/2009 7:52 PM (GMT -6)   
Remicade pre-meds are usually Benadryl and Acetaminphhen.
Infusion rooms by far are the best at starting I.V.'s
Remecade is infused in an I.V.that usually takes 4 hours the first
time,then 2 to 3 hours after that.
Infusions happen usually happen every 8 weeks,sometimes sooner if needed.
The Remicade order won't be sent to the pharmacy until the I.V. is started.
(some times if the pharmacy is busy this takes a while.)
I usually work a half day then go to my fav hospital.
The pre-meds put me to sleep...
I relax,watch tv,mostly sleep...
Iv'e had two bad reactions in over two years
Half way through nausia...drool...sweaty-they stopped the infusion until I felt better
then restarted it, but much slower.
The second time I felt I had to go to the bathroom,stood up ,my face was red,so was my
ears,and I was feverish,The nurses asked me to have a seat and they stopped my I.V.
and called my G.I.Then restarted my I.V.
The infusion nurses are most concerned about patients with colds and soar throats.
If you are sick they probably will call your Dr. and re-scheudle
Surgery and Remicade together have put me in remission for over two years.

Best Wishes...
diagnosed 1981
remission until 2006
Entocort, 6mp,Hydrochlorothiazide
Remission since surgery
and 8-week Remacade.
d since 1981(enjoy the look
on Dr's faces)

crohn's pt mom
Regular Member

Date Joined Nov 2008
Total Posts : 86
   Posted 3/4/2009 9:40 PM (GMT -6)   
thanks so much for the info.  My  heart is breaking, I can't stand to see her suffer so.  You should never have to see your child this sick.  I'm praying remicade will be her answer too.

Regular Member

Date Joined Apr 2006
Total Posts : 164
   Posted 3/4/2009 10:39 PM (GMT -6)   
Hello, I just got my second infusion. I haven't had to take any pre-meds either. I (knock on wood) havent had any bad reactions from it. I have noticed that the pain is less. I pick up my 4 vials (one infusion) from the pharmacy and have to bring it with me to the clinic. I bring my portable dvd player and rent movies b4 I go. Ive only experienced a nice relaxing experience. I have also met a few ppl along the way to compare war wounds.  Hope it works for your daughter ... good luck 

Veteran Member

Date Joined Mar 2005
Total Posts : 1289
   Posted 3/4/2009 10:58 PM (GMT -6)   
my doc is talking about starting remicade also...nice to hear it helps so many...still scary though.

Regular Member

Date Joined Jan 2009
Total Posts : 80
   Posted 3/5/2009 8:33 AM (GMT -6)   
i've been on it for over a year now. i'm doing very well!!
age 41,diagnosed with CD in 11/07, Rx Pentasa 4000mg and Remicade.

Regular Member

Date Joined Dec 2007
Total Posts : 131
   Posted 3/5/2009 1:53 PM (GMT -6)   
Been on Remicade since November. I've gained back 30+ lbs. in that time (to say I'm able to eat like a madman now is an understatement.)
I have problems with fistulas/abscesses and it's helped to heal those (some minor bleeding when I go still, but very manageable now.) I also had severe arthritis and joint/feet swelling and that has also been almost eliminated. No side effects thus far (they are numerous and nasty and for that reason it took me over a year to decided to go on it.) I can't tolerate the Flagyl either and no problems with this. Be careful with the Cipro. I had a horrible reaction to that which caused severe pain in my Achilles tendons (one of the FDA black box warnings is that it can cause tendon damage, and I saw this after just one dose, so be careful.)

I'm really happy with the Remicade so far. Best of luck to your daughter and you!
Type I Diabetes- 29 yrs. (MiniMed Insulin Pump)
Celiac Disease- 8 yrs.
Crohn's Disease- (Nov. '06)
Remicade (First Infusion 11/3/08) yeah

Veteran Member

Date Joined Jan 2006
Total Posts : 725
   Posted 3/5/2009 2:32 PM (GMT -6)   
I'm actually getting my Remicade infusion right now, as I type this message.
I've been on Remicade since early 2002. I'm on an every 8 week schedule so this is probably somewhere close to my 60th infusion.

It's been a miracle drug for me. I was in the hospital when they first put me on it, and it was a last ditch effort to hold off surgery. Turns out that it worked so well, I've been pretty much symptom free since starting it. I did have a minor relapse back in 2005, but they bumped my dose up and I've been good ever since.

I've never needed pre-medication, and I've never had a reaction to it. I'm at the maximum dosage for me, currently getting 1000mg every 8 weeks.

The infusion process can be a bit intimidating at first, especially for the younger folks, but after a few times, they'll be accustomed to it. It can take a few hours, so make sure to bring something to do, a book, video game, computer, etc.

I look forward to my infusions. It allows me to sit down and do nothing for a few hours, and the RN's are very nice and understanding.

Remember that ALL drugs have side affects and risks. Don't let that discourage you from trying this medication. Only you, your daughter and her doctors can decide what will work and what will not. I hope it works out as well for her as it has for me. If not, there are a lot of other drugs in the same catergory as Remicade, so if it doesn't work, they can always try one of the newer ones.
Matthew McKenna,
Joey's dad.

Remicade, 6MP and a few of their friends.

"I'm just along for the ride."

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