Posted 7/4/2008 4:30 PM (GMT 0)
I've been on Remicade for 5 or 6 years now with no problems what so ever. I've never had any adverse reactions, allergies, or any issues.
It has worked very well for me, and has given me many years of symptom free, or near symptom free living.
Before you start Remicade, your doctor will do a TB test. Remicade can activate dormant TB, so that has to be cleared up first.
The infusion process is pretty easy, if you know what to expect. It will usually start with the RN taking a baseline of your vital signs. Once that is done they can start the IV, other than the initial "stick", the process is painless. The Remicade is started very very slowly. The nurse will take your vital signs again to see how you are tolerating the infusion. Any sudden changes in your vital signs can be a precursor of a reaction. Not all reactions are as serious as those above. The RN who does mine, and she has done hundreds of them, has never had anyone with a serious reaction. The most she has ever seen is a mild skin irritation at the infusion site. Anyway, if you are tolerating it well, the nurse will speed the infusion rate up slightly. This process of taking vitals and speeding up the infusion rate will continue about every 15 minutes until the maximum infusion rate is reached. The whole process can take anywhere from 2 to 3 hours. While it may sound like a real pain, it can actually go by pretty fast. I've found that I really look forward to my infusions as it gives me a few hours to relax.
Once you have your first one out of the way, it's pretty easy. Normally, there is a "loading dose" procedure that is done. This consists of an infusion, a second one two weeks later, and then a third 4 weeks later. After that, the infusions will come every 6 to 8 weeks, depending on what you need. This loading dose builds up the amount of Remicade in your system. It's a good idea to keep track of your symptoms as this will allow the doctor to see how you are responding to your treatment. It's common for some of the Crohns' symptoms to start to come back as you get closer to your next infusion. If things get to be too much, you and your doctor can choose to change the schedule of your infusions. Going from 8 weeks, to 7 or 6 between infusions can help reduce symptoms.
As for the reactions, not all are quite so severe. It's also pretty common for the doctor/nurse to "pre-medicate" before the infusion. Often they will administer benydryl or some IV steroids before the infusion. This is to reduce any allergic reactions, if they happen. Also, if you do start to have a reaction, they can administer more drugs, and they can also slow down or stop the infusion rate. After the first few infusions, if everything goes well, you and your doctor can choose to forgo the pre-medications. I've only had the pre-medications the first two times. After that I just go in and get the infusion.
I've tried to figure out exactly how many infusions I've had. I've lost track, but I know it has been a lot. I originally started off at 400mg per infusion. After I flared again, my GI upped it to 1000mg per infusion. That's over double the original dose, and even with that much Remicade, I've still never had a problem. I normally get mine every 8 weeks, but at times I've had it every 7 weeks, and once every 9 weeks. The important thing to remember is to communicate with your doctor and infusion nurse about how things are going. If you are starting to have symptoms return between infusions, let them know. While a little bit is normal, too much isn't. Changing dosage or time between the infusions can help a lot. It is also pretty common to use some other drugs along with the Remicade. I'm on 50mg a day of 6mp. Apparently the two work together very well. There are other combinations other than 6mp, but usually the same family of drugs.
Most importantly, keep in mind that Remicade is a treatment, not a cure, so while you may notice a huge improvement in your symptoms, don't expect everything to go away.
I really hope it works for you as well as it did for me. I've been really fortunate in that it has really made a big difference in my life. I've enjoyed a lot of symptom free living.