Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Starting remicade

I am very excited for you. Like most people, I was extremely nervous starting it. My husband was to be with me on the first infusion and we were in a private room so they could explain everything, take their time and see how I reacted.

I did take an antihistamine before starting each time and they also gave me IV steroids before starting to help ward off reactions. I did have reactions but nothing they couldn't handle with more steroids or stopping for a while. Mine were shortness of breath mainly which would be ok after they slowed it down or stopped it for a while.

I usually was there at least half a day. One of my first infustions I was there all day because I had to get it so slow for my body to adjust so just be aware that it is not unusual to have to do that.

I was one that was only on it a year. I didn't react well to it and it was better for me to stop it because of no benefits and the potential for more problems. I am certainly not sorry that I tried it.

I just don't do well with meds in general. There are so many people here on the forum who have benefited greatly and we will just count on you being one of those.

Lisa did a good job explaining it. I, too, was in an Infusion Room at the doctor's off with usually about 12 or so at a time there. After the first time, I went by myself because they did not have room for everyone to have someone with them. They kept us plied with soft drinks, crackers, etc. and plenty of magazines which I usually took a book I was reading but would end up just a big day of visiting with everyone else there. Not a bad experience and I never saw anyone with a serious reaction in all of my time there.

I wish you the very best.

Blessings.
Possi

Hi there and welcome to the world of the biologically modified!

As you've already heard, everyone reacts to these meds differently. Some have an immediate bad reaction, others react over time, still others have a slight allergic reaction and need IV benadryl before the Remicade is started, and others have nothing but positive. I get a slight tingling under my skin, so I get 25mg IV benadryl 15 minutes prior to each infusion. I'm also to carry a packet of benadryl for a couple of days after, but haven't needed to take any since my 'booster' infusions.

The first three infusions will happen in quick succession, at weeks 0, 2 and 6. Then, they'll get you into a routine with it that suits your individual case. At first, I was at the hospital for about 4 hours, now it's about 3 what with registering at the clinic, waiting for the pharmacy to mix the stuff up, then a couple of hours for the infusion (some people get it in about 90 minutes, but with my allergic reaction, they're extra careful with me). You'll probably be asked to wait around for an extra hour after your first three, as they'll want to watch you to make sure you don't have a reaction. After that, they'll relax about it a little.

I've always found that I'm not quite right for a couple of days afterward, as my immune system readjusts. I don't feel sick or anything, but my sweetie says that I'm just not quite myself. And the benadryl knocks me flat for much of the day of my infusion.

When I first started, I was really good about staying put in the clinic so the nurse could monitor me. It's been 4 years now, however, and I don't stay put easily. I trundle around the hospital, attached to my IV pole, getting coffee or food. Problem is, if you walk around too much it impacts the speed of the infusion. So, I'm trying to tame my restlessness while I'm there these days and have learned to make the pole higher to create more speed. We have recliners, too, but no TV. sigh. It's OK tho, as there's always someone to talk to. Actually, our own BethB was there on Tuesday when I was, which was a treat!

Anyway, that's my input. Good luck with it. Remicade changed my life in so many ways it was a revelation and even now, when it's effects are slightly less, and even in the last week before my infusion when I get an almost full reminder of why I'm on this med, I'm still in better shape than I ever have been. I hope it works the same way for you.

Hugs,

Man I wish my infusions went that fast! They start me at 10 drops per minute and work up to 150. Even then I'm there for almost 5 hours! Counting checking in, them mixing my dose, and sitting for 20-30 minutes afterward with just saline to make sure I'm ok.

I do it in the surgery unit, so it can be crowded, but it's normally just me and my husband in the "room." They have little TVs which we don't get TV at home (only a few channels from the antena) and can see why we don't like paying for it. Just flipping through with nothing to watch! We normally watch silly things like the price is right! Bring magazines and snacks and drinks. They normally gie me lunch and have REALLY good mashed potatoes. I told the nurse last time how much I like them and she says one of her other remicade patients orders just a big bowl of mashed potatoes for lunch, that's what I did and it was heaven! I normally go in with OJ (my blood sugar crashes with needles!) and decafe lattes, so needless to say between that and the fluids from the IV I'm up peeing every 30 minutes!

I normally get a slightly heavy feeling in my chest, which calms down about 5 minutes after the infusion is done. Nothing too serious. I can't do IV benedryl (but I can take the pills) but I take allegra an hour before. The next day I'm very tired.

This time I started the remicade after being off it for a bit, but I remember being tired last time, but this time I had to go home during work. I felt like I was hit by a bus. Not quite sick feeling, but sick feeling, it's hard to explain.

The first time I started it it took about 2 months to really kick in, then worked great for about 6 weeks. This time it's only been a week or so, so I'm noticing anything. Plus my dr won't call back about being on cellcept or avara. I'm hoping it's not too late to start those. But really I don't think it'll work great for me again. My body has a weird way of dealing with drugs. Everything I have taken stops working. The drs don't know what to do with me.

But I hope it works well for you! I know many here love it!

I think our clinic nurse puts me at 125 per minute right from the start of the infusion. I know she doesn't fiddle with it once I've started ... unless I've been walking around a lot that day and it's taking longer than it should. Then she speeds it up a tad.

Hugs,

Good luck with the remicade! The only thing I have to add to what has already been said is that if you're off it for a period of time (i.e. several months to a year) and then restart, the risk of allergic reaction increases. I was on remicade for my crohns a few years ago (prior to the AS diagnosis) and it worked wonders! It worked so well that I stopped it for almost a year, unfortunately when I restarted I had an allergic reaction. I did feel tired and headachy for about a day after the infusions, then back to normal after that. I also noticed that I caught a lot more colds when on remicade (although I was also working with children at that time, which increased my exposure to those types of things).

Good luck!