newbie to Remicade

I am pretty new to Remicade, but I hope I can help you a little.  I was hospitalized back in December.  They found out I had an abcess and 2 fistulas.  Before doing surgery the docs agreed to try Remicade.  I have had 2 treatments and go for my 3rd tomorrow.  I was very worried and nervous as well, but I must say this drug is amazing.  I went from having diarehha about 10 times a day to not having it at all!!  Sometimes I have to stop and think if I have had a BM!  It takes around 3 and 1/2 hours for the actual treatment.  It makes me sleepy since they pre medicate you with Iv benadryl, but that is the only thing I have noticed!  It really isn't bad at all!  I was nervous before the first one, but now it is no big deal!  I work in a hospital so I know all about being scared of getting sick!  I actually had a little cold this weekend, but was fine by Monday. Believe me I am surrounded by sick people!  I hope this helps you some!  Good luck! 

Hi Miss Priss,

My husband was diagnosed with Crohn's disease in April 2008, while he was in the hospital for a c-diff infection. Needless to say, he was in really bad shape - he lost 45 lbs and spent around 45 days in the hospital, and they tried high doses of solumedrol (steroid 120 mgs), but it made no difference at all. Bowel rest didn't make things any either either. The surgeon was following my husband, and he described the surgery - my husband was to have 2 stomas - one for the small intestine, and the other for the remainder of his colon to weep into after the resection. So, we were at the end of the tether. My husband's GI suggested remicade, even though it was dangerous to take remicade while he was still on antibiotics for the c-diff infection . . . but he felt, if he was headed for surgery anyway, we ought to try remicade . . .and remicade changed everything for the better!

1. how long have you been on it?
My husband had his first dose of remicade on April 10, 2008. So, he's now been on it for nearly 2 years.

2. How long does it take to start working?
He felt a little better 2-3 days after the first infusion. He felt _major_ relief after his second infusion.

3. How long is the IV that you're sitting in the office getting?
With the prep and the infusion, it usually take about 3.5 hours. He gets both 40mgs of solumedrol and IV benedryl, and he dozes for the most part.

4. side effects?
He does have an infusion reaction - for about 2 days after the infusion, he runs a fever and his whole body aches, and his joints are painful. But he combats that by taking 20 mgs of prednisone the day before the infusion, and gets a 40mg dose of solumedrol before the infusion - and this makes the fever and joint pain go away . . . he just feels tired for a day after the infusion, if he gets his 2 day steroid regimen.

5. the whole immune system thing is what scares me most, I work with people everyday as a skincare therapist, am I going to get really sick and die?!
My husband has not even suffered a cold since he started the remicade. He has had more problems with c-diff than with anything else, but antibiotics work for that, so he's ok. He also has had issues with warts on his feet, but he had that before he started the remicade, so I don't think remicade is a contributing factor there.

Remicade gave my husband his life back. It gave me back my husband, with no stomas, no surgery, and a normal life. I am thankful for remicade every day. My husband is now on a every 6 weeks regimen of remicade (not for crohn's, but because he had an episode of reactive arthritis - they are hoping that they can move it back to every 8 weeks soon). Remicade is a dangerous drug, but it is also a wonderful drug when it gives you back your life!

I wish you all the best, and I hope you get the relief you need from remicade.

Hugs,
PV

I used to do the Remicade but not anymore. You have the IV for about 3.5 hours.....The only side effect I had was that I bruised very easily. I quit taking it because of insurance purposes...I switched jobs, so I had to stop..I now do cimzia...ITs two shots that I get. It's suppose to be compatabile to the remicade. The good thing is you don't have to sit with an iv for 3.5 hours. I did have one flare up and had to have surgery about a year ago. Since then I have been good..hope this helped you some..

I just wanted to comment on the immunosuppression. I have not started Remicade yet (I'll be starting on the 22nd), but I have been on two other TNF alpha meds and I noticed an increase in upper respiratory infections when I first started. After a few months of that, I started carrying around a bottle of hand sanitizer wherever I went and that pretty much took care of it. I think I have maybe had one cold in the past six months or so. If you have a lot of interaction with people daily, I would definitely recommend it.

--can you drive yourself to and from the treatments or does someone need to be there with you?

My doctor tells me that I am supposed to get a ride home (because of the benadryl) so I always tell her my ride is waiting for me and then I leave to drive myself to work.  If you have a low tolerance for Benadryl, you should probably get a ride home, especially if you do not live close to your infusion center.  The Remicade itself should not affect your ability to drive.

Also I need to agree with those saying to take precautions such as hand-washing etc.  A little bit of simple preventative measures are definitely worth it when you are at an increased risk of infection.  Don't become obsessive, though!

Having MY Infusion tomorrow.  I was diagnosed with Crohn's in April of 2009 and started Remicade in August.  Coudn't take Pentasa and was on the steroids for a small time.  Glad i'm not on either. Since I've been on Remicade my life has changed, and for the better.  Sometimes you can have a side effect of rash or itching, but that's supposed to be what the Benedryl is for.  I've never had either.  Just tired though.  I think you will be amazed at how much your life will change with remicade.  Good Luck 

I've been on Remicade since October and just had my fourth dose last week. :)

So far I like it pretty well. I started Remicade a week after my Crohn's diagnosis and I haven't had a flare yet, and I feel like a completely different person - sooo much better than before they finally figured out what was up with my insides! Getting the IV typically takes 2.5-3 hours, depending on how quickly they can get it mixed and hooked up. Sitting there does kind of suck but it's pretty good reading or web surfing time. ;) The only side effect I've had is tiredness; it wasn't as bad this last time around but the dose before that, I was practically catatonic for the rest of the night. They always give me Tylenol and Benadryl before starting the IV, that helps prevent any adverse reactions. I was worried about the immunosuppression as well, but my doc made sure all my immunizations were current and advised me to take a daily vitamin and I've come through flu season without so much as a cold - my sis had bacterial pneumonia at the same time I started Remicade at about three weeks post-op from my resection and I didn't have any problems even then. Take your vitamins and be conscious of washing hands and such and you'll probably be just fine. OH and if you're worried about the IV be sure to drink lots of water before you get it, that will make it easier for them to find a vein. :)

Good luck to you! Hope everything goes well.