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Share your side effects with remicade?

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Crohn's Disease
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Posted 10/19/2007 3:43 PM (GMT 0)
Hi!!  I was wondering if anyone would share their side effects while on remicade?  I just had my 3rd dose with no results.  I was curios to what people experienced while on the medication.  I am more curios to the negative but will be happy to hear the positive.  Thanks!!
Posted 10/19/2007 3:54 PM (GMT 0)
no negatives.   It has worked wonders for me these past years.   It temporarily closes my anal fistula.   I can not take my meds for the 2 weeks following, if I didnt want to.  

Unfortunately, I think it may be wearing off, because it started wearing off during weekn 5. sad

Posted 10/19/2007 6:03 PM (GMT 0)
no negatives...it will be 3 years for me in Dec. since I started.
Posted 10/19/2007 6:26 PM (GMT 0)
do most people get relief right away from remicade?

Posted 10/19/2007 6:36 PM (GMT 0)
Was good on till they overdose me on my last infusion, they gave me one more vile more then i should of gotten. Going to asked them if they got the right dosage from now on LOL!!
Posted 10/19/2007 6:41 PM (GMT 0)
I am usually tired for a few days after my infusion, but other than that, no side effects.  The tiredness isn't from any of the pre medications, since I don't get benadryl, as I can't tolerate it.  Take care.
Posted 10/19/2007 6:58 PM (GMT 0)
I was on it for 3 1/2 yrs every 4 weekis and it was great for me. I really did not start to see any improvement until about a week after my third infusion. Most people start to begin to see some things change. Don't give up yet, you have just finished your loading dose, give it a little more time.... Susie
Posted 10/19/2007 11:33 PM (GMT 0)
I had great results with it but developed lupus-like syndrome.I just switched to Humira- just started my maintenance dose and don't think its working quite as well as the Remicade yet
Posted 10/20/2007 2:43 AM (GMT 0)
I had a negative side effect, but even with the side effect, I felt better than I had in a year. After the first treatment, I developed a rash, kind of like a chemical burn really. It was all over my body. When in for the second treatment, and 10 minutes into it, I quit breathing. The next day, all the glands in my entire body swelled. I looked like I had the mumps. But even with the rash, not breathing, and swollen glands, it was the best I had felt in a year.
Posted 10/20/2007 4:32 AM (GMT 0)
I have been using Remicade for almost 5 years now. It has been a life saver for me, but I do get an intense headache from it. Fortunatly for me, I have had some great doctors who were willing to work with me on the side effect. We try to beat the side effect before it presents. It took us a while to figure out what pain medication worked, but it was worth it. I continue to use it every 6 weeks as I have for years, it has given me my quality of life and I cannot imagine switching or removing this drug from my list of medications. If I remember correctly, it took 4 doses before I found significant relief. I wish you good luck and hope you have the quality outcomes that I have had.
Posted 10/20/2007 8:11 AM (GMT 0)
i have be on Remicade now, for over a yr.  so far so good.  the only negative i have is while they are givinh me the remicade i get a short ness in air.  i turn the instrument off, which they showed me how. and after that i am good to go.  thank go for the Benadryl. i can sleep threw most of it. which takes me about 5 hours. (difficult case). devil    Good luck to you and hang in there. yeah
Posted 10/20/2007 11:52 AM (GMT 0)
I was on it a little over a year. While I was on it, along with 6MP, it worked well. The combination healed my abdominal fistula and lessened my CD symptoms. I did have a delayed reaction to the medication right from the first though, and we managed my reactions with pre-meds after that for quite some time. I eventually did get "serum sickness" where I just had too many antibodies and they were fighting the medication and creating havoc on my body (joints) so I had to quit.
Posted 10/20/2007 12:00 PM (GMT 0)
thanks everyone for you comments. I am hoping that this does the trick!! I can't stand feeling soo fatigued and having mega joint pain. I have noticed my ankles getting swollen. It started about 4 months ago (before the remi) They swell more in the back of the ankle>but last night the ankle swelled a little in the front. After each treatment of remi i recieved, that night i would be short of breath and after that occasionally i would feel like i had a weight on my chest. This morning I am having a shortness of breath plus when I walk i get a tingling in my feet and I can feel stiffness in my ankles. Do you think this is normal or should I call my D?
Posted 10/20/2007 12:12 PM (GMT 0)
Are you on any pre-meds when you go in for your infusion? The Remicade can do that, but so can the pre-meds. I would talk to my doctor about it, and if you're not on pre-meds, maybe you should be, maybe even take them for a few days.
Posted 10/20/2007 12:17 PM (GMT 0)
I take benadryl -2pills- and 2 extra strength tylenol before the treatment.
Posted 10/20/2007 12:20 PM (GMT 0)
Hi no-side effects for me.
Posted 10/24/2007 12:30 AM (GMT 0)

I just had my second infusion on the 9th. I have been tired and out of breath very easily, and it seems to be more of a delayed type thing.  I have also noticed that my hair is really dry all of a sudden. In the past 2 days, something is a little different. I still have pain but it is not as intense. I hope that it is working, but I am still scared that it won't. You sound as if you are in the same boat. I go for my third infusion on November 7.

Good luck to you!

Posted 10/24/2007 1:37 AM (GMT 0)
Haven't had any negatives that I know associated with the medicine. Its the only thing that's helped me the slightest bit, however I'm not seeing as much improvement as I would like. I have also had 3 treatments and plan to get my dosage upped since its not helping with anything other than my joints as of right now.
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