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Remicade. Please help!

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Crohn's Disease
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Posted 5/10/2010 1:54 AM (GMT 0)
Hi guys I hope you don't mind me being here as I don't have Chron's disease but RA. I posted this question in the RA forum and it was suggested I ask in here. I'm currently on 20mg mtx shots, oral and depot injection steroids. In edition my Rheumy is putting me on Remicade and i'd just like to here from someone what it's like to have, The process and any side effects etc. I know the acidemics that (over here in UK) you are given anti hystamines and paracetamol before infusion, infusion is given over two hours and first couple of times you are observed for two hours after infusion. But I don't even know how often it is given, If there's any side effects while have infusion or after etc. I hope one of you guys can help me and i'm dead sorry for posting here but getting quite anxious. Thank you in advance! Abol X
Posted 5/10/2010 2:07 AM (GMT 0)
The "normal" interval is 8 weeks but many get the infusion every 6 weeks and I saw a posting yesterday that said every 3 weeks which seemed extraordinary to me. You can google side effects of the drug but I notice that many posters complain about fatigue after their infustions. I feel fine afterward but have only had three so far so I am not an "old hand" yet. I think serious side effects are rare. Remember that happy people are far less likely to come here and post than those who had a problem. Meaning that if you read a lot of negative stuff here it likely represents the exceptional rather than the usual. That said: My legs, especially my quads, feel kind of dead or heavy or like a muscle after overuse. Feels like that all the time. I don't know if that is an effect of remicade or the result of my having been so sick this year and not yet recovered???? The process is easy.  Hook-up to and IV for a while and then the addition of the drug which is started slowly and then increased.  Bring a good book or headphones or other distraction.  I tend to take a nap.  Good luck
Posted 5/10/2010 5:23 AM (GMT 0)
hi there. i've had 2 infusions- benadryl and tylenol premed then the infusion. no side effects other than being very tired after. i have my 3rd infusion next Monday. not noticing any good effects yet. good luck!
Posted 5/10/2010 5:42 AM (GMT 0)
I've had ~10 infusions with the only side affect being some fatigue the day of. I get 1 Benadryl and 1 Tylenol as premedication. There's really not much to it: get premeds, get bp taken, start IV with saline, run Remicade through, flush with saline, leave. I always bring my iPod and/or take a nap during the infusion. You'll be fine, try to not get too worried.
Posted 5/10/2010 5:51 AM (GMT 0)
I've had my second treatment a week ago 1st treatment then 2 weeks then second treatment then 4 weeks till the third. I really felt nothing the first time and during the second time I felt very minor shortness of breath. The nurse said that the two Benadryl might make me tired the day of the injection.
Posted 5/10/2010 7:42 AM (GMT 0)
I have never had benydryl or any other prep prior to infusion. I've been on remicade for 3 years every 8 weeks and never had any symptoms what so ever. Just like putting saline in. You can expect your first infusion to be quite slow, about 3-4 hours total, they will be very careful the first time so definately bring a book or ipod. I hope it works for you as it has for me. The most relief I get is from crohn's arthritis and it's wonderful to not have that constant pain in my joints and bones. Best of luck to you! Rob
Posted 5/11/2010 2:16 AM (GMT 0)
I had benadryl and 50 mg of prednisone before an infusion. When I was in the remi clinic I met a fellow that had really bad RA. He couldn't open his hands and was in alot of pain. As it turned out I ran into him again about 6 months later at the clinic, and he was like a different person. He was walking around, driving again, and most of all he could put his arms straight and hold a cup of coffee. I hope you have success with with Remicade to.

Julia
Posted 5/11/2010 2:31 AM (GMT 0)
I get oral Tylenol and IV antihistamine and steroid, then about 30 minutes later the remicade is started. My first few infusions took about 4 hours total because they increase the dosage very slowly and check blood pressure frequently to make sure you are tolerating the medication well. Now I'm usually finished in 3 hours total.

After my first infusion the next one was after 2 weeks, the next was 4 weeks later, then 8 weeks later. I've been on remicade for almost a year and still get it every 8 weeks. The amount of drug you get is based on your weight, so you will likely get weighed every time you go for an infusion.

My only side effects are being sleepy on infusion day, but that may be the antihistamine as much as anything else. Whenever possible I take the whole day off from work and try not to plan any family things that my husband can't take care of.

My biggest problem is that my veins are uncooperative, but the wonderful infusion nurses rarely have to stick me more than once. Good luck to you!
Posted 5/11/2010 2:35 AM (GMT 0)
When I was on it I didn't have any reactions. I got 1/2 a dose of Benadryl because that gave me a worse reaction than the Remicade. When you get it, they'll weigh you, and you'll have to wait a 1/2 hour or so for it to get mixed, because the amount you're given is based on your weight. The 1st infusion takes the longest, and they generally speed up every time you go in. When I got it the rooms had tvs in them as well.

That being said, once you get on it you CAN NOT go off of it and try to restart it. I had to stop it because I lost my insurance, and couldn't afford the $5000 per treatment. I was doing really well at the time too, so my doctor took me off of it. When I got new insurance, and I flared, he tried to put me back on it and I had a bad reaction. Chest tightening, hard to breathe, I got really hot. So that was it for me, I can never go on it again.

I just had a discussion with him today about how I'd like to stay away from biological warfare (as I call it) for as long as possible, because I'm only 26 and don't want to have to be on something for the rest of my life, or not have the option of taking it down the road when I can mostly manage my symptoms without it (assuming I'm a good patient and stay on my meds).

Good luck!
Posted 5/12/2010 1:52 AM (GMT 0)
I'd just like to say a big thank you for all your warm replys. Julia, I was quite encouraged by you're encounter with the man with RA and how He progressed positively with the Remicade. I probably won't be starting it till I next see my consultant in 8wks because He has to do some research to check that it won't flare up my neurological condition but i'll drop by and let you know how i'm going. Thank you once again! Abol X
Posted 5/12/2010 3:08 AM (GMT 0)
I did not have any side effects and did not receive premeds (refused them when a new GI prescribed them - I found them unnecessary). The only downside is the time you have to devote to it but if you live a pretty busy life, you'll begin to look forward to almost a full day of "rest" when you get an infusion. I enjoyed the time reading, watching a movie, chatting on the phone, etc that I got to do. It was nice.

I was on it for 2.5 years at 2-12 week intervals. I ended up reacting to it the last 3 times and it lost it's effectiveness so we moved to Humira. It was a fantastic drug that gave me my life back after being very sick. I hope it works well for you.
Posted 5/12/2010 4:03 AM (GMT 0)
I took it for Crohn's AND RA. I was on it for 6 + years and the only reason I stopped was because it lost effectiveness on the Crohn's. It never lost effectiveness on my RA. So, if this works for you, you might get a good long run out of it. I took it as far apart as every 8 weeks and as close together as every 5 weeks depending on the various stages I was going through with crohn's. The anti-histamines always made me SUPER sleepy, but I never felt tired the next day. The worst side effect I suffered was/is the development of chronic sinus problems, but they have been very mild (they just won't go away). So, remicade was an absolute lifesaver for me in more ways than one. I even had 2 kids and breastfed them both while taking remicade. I hope you get MUCH success with it!!!
Posted 5/12/2010 8:21 AM (GMT 0)
I have now had over 60 infusions because I have mine every 4 weeks. I am now premedicated with Benedryl and cortisteroids and the main side effect I have is being drowsy for the day due to the IV. benedryl. I am usually nauseated that night and have body aches for the next couple of days similar to when you have the flu but it goes away.
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