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Starting Remicade Questions

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Crohn's Disease
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Posted 5/2/2011 5:01 AM (GMT 0)
Hi everyone,

I'm going to be starting Remicade on Thursday and am scared out of my mind...I've been reading about all the side effects/reactions that people have gotten from it. How many of you here have had reactions and what happened? How many have had good experiences? Also, has anyone been on Remicade while being pregnant? I'm not pregnant but am wondering what would happen as I've been told that Remicade isn't a drug that you can just stop taking and start again.

Thanks,

Marissa

Posted 5/2/2011 1:47 PM (GMT 0)
Hi mv4700 we have had many members who have had great success with Remicade. Most have done really well on it.

We also have had many mommies have healthy babies after using meds such as Pred, 6mp/Imuran, Remicade and even Humira. The only med that you can't use while pregnant is Methotrexate. Good luck!
Posted 5/2/2011 4:35 PM (GMT 0)

Hi,

I used it for 2 years and some with no side issues. I even enjoyed the time off day to day life (1 day). It's odd, but I'm going to miss my infusions.

Since it seems to have stopped working, I'm swicthing to other options...

Good luck, and enjoy too! 

Posted 5/2/2011 5:06 PM (GMT 0)
Well In June it will be my 5th infusion, and my only 2 complaints are i get a major headache the day after( which i was able to control with a couple of migraine tylenol an hour before my infusion the last round) and itchy itchy itchy, which i hope by the 5th they will be able to give me a shot of benadryl(sp?) other than that...woo hoo!!!!! had a scope a couple of weeks ago and what a difference. I am all pink inside again!!!(instead of some strange alien color..it was not pretty let me tell you)

You'll be great!! The nurses are wonderful, and if you do feel "funny" or not right, they are there at your side!! I love my nurses at the clinic. I'll be there( mentaly) holding your hand for you. Good luck and let us know how it went.  :)

Posted 5/2/2011 6:08 PM (GMT 0)
If you do have any reactions a lot of drs are saying to take 40mg of prednisone 2 days prior to the infusion and the day of the infustion and a benedryl the day of and most people will avoid any reactions if you take this regimen so you might want to think about it...it cant hurt it can only help you know?

Plus there's nothing to be scared of Remicade is a great drug and its just as safe as anything else out there...everything has its own side effects somewhere out there.
Posted 5/2/2011 8:35 PM (GMT 0)
I got my first infusion on 4/26 it was at my Dr.'s office. There were 4 lazyboy recliners, I sat in one, the nurse numbed the area for the IV (I barely had any mark after). I got warmed blankets, a movie and some cheese and crackers. Plus she gave me benadryl and tylenol to start off with. Every 20 mins she checked my temp and blood pressure. My bp went below 60, she told me to drink more water and it went up to 68. After I was tired and had a slight headache. I did not think I was as nervous as I was the day of but that morning I could barely eat and I was told to eat plenty of protein. about a day later I started feeling better. I did have about 12 bm's w/blood a day and went down to 1 to 2 a day and sometimes no blood and sometimes very little. I am trying to be hopeful that this will work for me.

Best of luck to you!
Posted 5/2/2011 8:55 PM (GMT 0)
hey mv4700...i had my first remicade infusion a week ago today....i had no side effects and like beth75 states the experience during the infusions was great....i am seeing slight improvement in my bms...solid forms are coming back and the mucous and blood is not as profound...One of the other patients next to me was getting his infusion who had crohns and he told me to wait till the 2 to 3 week mark....which is when he saw significant improvement.... i know everyone is different with their disease but it was great encourgment....i cant wait to get back next week for my 2nd infusion.....good luck on yours and dont fear a thing...and bring something to read....
Posted 5/2/2011 10:01 PM (GMT 0)
I remember when I was getting remicade THE DAY of the infusion, I'd feel like I was injected with energy, it just came out of no where. I always looked forward to that. Because I could really get a lot done that day and stay out later then normal with my friends like I had used to prior to crohns disease.
Posted 5/3/2011 2:50 AM (GMT 0)
Thanks for the feedback..I'm still nervous about reactions/side effects but am hoping for the best.
Posted 5/5/2011 3:02 AM (GMT 0)
Tomorrow is the big day and I am still scared out of my mind! But thank you all for the feedback! I hope everything goes well and am praying for no allergic reactions/bad side effects!

Marissa
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