Remicaide (sp)

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.

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...

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 

i've been on it for over a year now. i'm doing very well!!

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.