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Remicade... How long?...

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Crohn's Disease
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Posted 1/1/2012 12:03 AM (GMT 0)
How long for those of you on remicade did it take for it to take full effect? I had my 2nd loading dose dec 21st and my 3rd is scheduled for jan 20th. I have a severe case when they started and ive been going to the bathroom a lot less. I still have alot of pain where my inflammation was the worst esp when stool or gas moves through. This week my prednisone dose was lowered from 40mg to 30 mg a day. I dont know if that is causing it or if im eating something, but i havent tried but one or two new things the past week. I have an appt this week. I just want the pain to stop and to be better.

Im probably getting anxious about normal course of things with chrons...i know nothing is normal with chrons. But i was wondering how long with the remicade has it taken to work for people at least?
Posted 1/1/2012 5:13 AM (GMT 0)
I'm on Remicade and a few weeks ago had my third loading dose and I have yet to get relief. Tapering the sterids, like you, while taking Remicade doesn't help either. I've heard from various people it can take up to 6 months for you to feel the effects but if your like me and have gotten worse/had reactions your GI may want to switch you to another medicine.

Watch out for delayed reactions in these next few weeks! I didn't have a problem with the first dose but about 12 days after my second loading dose I had reactions(HUGE swollen hands and strange rash on various parts of my body).

Wishing you a happy remission soon!
Posted 1/1/2012 5:22 AM (GMT 0)
The only side effects ive noticed is ive gotten tired and my stomach burns for a few days afterwards. Hoping it stays that way. I really hope it doesnt take 6 months to fully work, you guys are a lot stronger than me. I cant take this not working, driving, being able to function yet part. Mentally it is so draining on top of physically being drained.

The steroids have tons of side effects... Non life threatening, but any far from pleasant... I hope the drop im dose hasnt let me go backwards. Could anxiety make my flare worse? Holidays def do not help on top of everything else...
Posted 1/1/2012 10:32 AM (GMT 0)
Before Remicade, I had seen a surgeon about removing my rectum. My symptoms were out of control and it seemed to be my only option. But before going down that road I gave Remicade a shot. It took a few infusions to a- find the right dose for me (double dose) and b- for it to take full effect.

This medication gave me my life back. So much so that I was able to gave a baby! A healthy little boy who is now almost 7 weeks old.

Since his birth my symptoms have returned. I've had 1 infusion and am VERY looking forward to the next one.

I hope it can work a miracle for you too. Hang in there!
Posted 1/1/2012 10:34 AM (GMT 0)
oups! gave = have
Posted 1/1/2012 4:50 PM (GMT 0)
Mmm i was wondering if they change the doses at all and if they do infusions sooner if you need it. I hope it works for me too. I count down to getting the infusions. I hope this med grabs a hold soon and really starts working.
Congratulations on your baby! Hope your symptoms go away soon too!
Posted 1/2/2012 9:31 PM (GMT 0)
Mine didn't work until I got a double dose. I also had to take it more frequently- every 6 weeks for a while. I also had to take benadryl during the tranfusion as it made it difficult to breathe. Have not been on it in years but it got me to my current state of remission. Good luck, hope it works soon!
Posted 1/14/2012 2:14 PM (GMT 0)
I just had my first dose last Wednesday and was hoping for more of a miracle worker. I have my fingers crossed, but like Andi the mental effects of being stuck in the hospital and waiting to get my life back are awful. I hope to see results soon and get back to my life. It is nice knowing that others have made it through.
Posted 1/14/2012 3:29 PM (GMT 0)
That gives me hope that someone else needed the double dose for it to work finally and that it did. If they have to give me benadryl i'll be knocked out lol. I reall hope it works.

Did they put you on every 6 weeks automatically with the double dose or do a few doses of 8 week intervals?
Posted 1/17/2012 6:02 AM (GMT 0)
For those of you who've had the double doses hpw many of those did it take to feel like it was finally working??
Posted 1/17/2012 11:32 AM (GMT 0)
NOt to worry you, but it took me 9 months to start getting relief.  We had to find the right balance of meds, when to take them to go along with the remicade.  Because of the osteopenia I am taking calcium which caused me a big hindrance until I learned that it blocks many meds which was part of the reason it took so long to get a grip on things.  I know how hard it is to hear this....but try to be patient.  You are turning down or subduing your immune system to keep it from attacking your insides and that damage inside will need some time to heal to quit hurting.  I should say I did start feeling better, for longer periods, soon after starting, but I got optimistic too fast.
Posted 1/17/2012 1:51 PM (GMT 0)
Ive gotten pretty fast effects the first two infusions... I was only going 2-3 times a day within a week, and they were semi-formed... But im def running out of juice this round and im scared if i get this and they say 8 weeks i'll be up **** creek without a paddle again and back in the hospital. Its very scary not knowing what will happen and meanwhile not feeling good at all. Its not helping that the prednisone doesnt let me sleep either, that or the pain.
Posted 1/17/2012 11:01 PM (GMT 0)
I was around the 10-12 week mark before I started noticing any positive effects, and then we had to up my frequency to every 6 weeks instead of the 8. After each infusion I notice the improvement right away.
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