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Crohn's Disease
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Posted 8/4/2011 3:12 AM (GMT 0)
Am going to be starting Remicade this month. Has anyone been on it, if so any side affects?
Posted 8/5/2011 1:39 AM (GMT 0)
Everyone reacts differently. I didn't do well with it, but there are lots of people who have no side effects and do really well on it.

Good luck!

Sarah
Posted 8/5/2011 6:51 AM (GMT 0)
Hi I did Remicade for 5 years put me in remission and now I am on Humira
and I still am in remission.

TBW
Posted 8/5/2011 6:58 AM (GMT 0)
Doing well with it myself.  I don't have to get the benedryl either.  I am tired the day of and the day after infusions, thats about it.
Posted 8/5/2011 12:42 PM (GMT 0)
my son started it in January. the only side effect he noticed was fatigue, most likely brought on by hours of boredom in the hospital
Posted 8/5/2011 6:07 PM (GMT 0)
I took Remicade from the late 90's until 2006. I didn't have to take the tylenol/benadryl prior to infusions at first. After a couple of years, my body did build up antibodies to it. Then, i did have to take the tylenol/benadryl prior to each infusion. That got me through to 2006.

I noticed no side effects. No fatigue or anything.
Posted 8/5/2011 7:15 PM (GMT 0)
I just started last month. I just get tired after the infusion. That's about it.

It made me feel better the next day too....major awesomeness.

I hope it works well for you.
Posted 8/5/2011 8:06 PM (GMT 0)
sitting at the bio clinic right now getting it
Posted 8/6/2011 3:18 AM (GMT 0)
Going for my 7th infusion on 8-18. I have to have Benadryl prior to the infusion. So far no problem and it seems to be working for me. I get tired for a day or so afterword but the benefits, at present, far outweight the small inconveniences. Boredom during the infusion itself is the biggest negative so far!
Good luck with your treatment. smurf
Posted 8/6/2011 10:18 PM (GMT 0)
I've been on it for a little over 2 years with no side effects. I get Tylenol, solumedrol, and benadryl prior to the remicade. The benadryl puts me to sleep quickly and I nap for most of the 2-3 hours I'm there.

I have bad veins (small and they roll) so I ended up getting a port-a-cath last September, which has worked out really well for me. Most people won't need one, though.
Posted 8/8/2011 1:09 AM (GMT 0)
Thanks everyone so so much! Still haven't heard when I'm starting this. But thanks to all your replies, I feel much better! :)

It's nice to have a support group!
Posted 8/9/2011 2:31 AM (GMT 0)
Need some advice...Have been on 9 mgs of Entocort since April and today I noticed that my hair is falling out! I heard that you can lose some of your hair being on remicade...Is there anything I can do? Also, can you still get your hair highligted?

I also noticed that most of you all were on benedryl and tylenol. My Dr. hasn't said anything about that. I did have to take 4 pills of methotrexate today.

I just found out that I start my first treatment of remicade next Monday. :(

Post Edited (MCG) : 8/8/2011 8:35:07 PM (GMT-6)

Posted 8/9/2011 9:42 PM (GMT 0)
Actually I don't think remi caused any "more" or any "less" hair loss than what I was already going through.
Posted 8/10/2011 12:48 PM (GMT 0)
I was on it for 2 years.  I didnt take anything with it.  I would be tired the day of the infusion and then would get a sinus type headache for 3 days.  But it put me into remission (fingers crossed)  Worked great for me

Posted 8/10/2011 2:05 PM (GMT 0)
800 mcg of Folic Acid will help to slow the hairloss. If you are on Methotrexate I think you are supposed to be prescribed a prescription strength of Folic Acid because MTX depletes it. Good luck!
Posted 8/10/2011 9:09 PM (GMT 0)
I took for about a year and it was my wonder drug. I never noticed any side affects and it worked really well for me before my body built up antibodies. My doctor is willing to try again at max dosage. I second the idea of bringing an iPod so you can nap during the infusion.

Good luck with it!
Posted 8/11/2011 12:35 AM (GMT 0)
Ive been on remicade for 9 years now and its the only medication I take for my Crohns. No side effects and never a reaction. Recommend it....

___________
diagnosed at age 14
Remicade since age 16
No other medications since, Currently 25
Posted 8/11/2011 2:46 PM (GMT 0)
This put me into remission and allowed me to wean off steroids. I was able to take it for a year with little side effects, until I built up immunity. Currently on Humira and still in remission. I recommend it. Ditto on the blankets and reading material.  The first few infusions left me fatigued for a day or so, but after that, no problem. Good luck!
Posted 8/13/2011 2:53 AM (GMT 0)
Thank you all so much!
Posted 8/20/2011 7:00 PM (GMT 0)
So, I had my first Remicade treatment and did good. Blood pressure was low. I go back in 2 weeks. Does the medicine increase in dose or will it be the same?
Posted 8/21/2011 1:15 PM (GMT 0)
Thanks alot for your feedback tstiodawg. You have been so helpful and I appreciate you taking the time to explain things to me.
Posted 8/22/2011 4:24 AM (GMT 0)
remicade has been great for me - feel much better - realized it the other day when I ordered SALAD at lunch and my sister in law just about fell off her seat in comparison to the last time I saw her. Still can't overdo it, but my diet has much improved with remi and feeling much better overall. I get tired the day of and after the infusion.

for all those who developed antibodies after awhile - how did you know this?
Posted 8/22/2011 4:36 AM (GMT 0)
i was on it for a while but had to stop bc my body started producing antibodies...now on humira.
i did not have a great deal of success on remicade.
i did not have any adverse reactions either...just super tired the next day.
i took tylenol and benadryl prior to the infusions.
good luck!
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