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Dr wants me to start Remicaide kinda scared

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Ulcerative Colitis
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Posted 4/24/2011 12:17 AM (GMT 0)
 

    Hi Everybody,

    I had my colonoscopy yesterday and It wasnt good. I have to start remicaide infussions soon. I'm nervous scared anxious all of the above.

    My questions are these. How long does each infussion take once your in the hospital? At first how many times do you go a month? Can you eat the day of the infussions or is there a particular diet you have to follow?

    Thanks for any advice or help...

Happy Easter to anyone who celebrates :-)

 

Posted 4/24/2011 12:35 AM (GMT 0)
There is no special prep nor diet for the infusions. Eat/drink as you normally would.

Once you are in the hospital, and they have inserted the IV, it is usually about 2 hours or so. I don't know if you are having pre-meds, but I recommend you speak to your Dr about this. The premeds help to prevent an allergic reaction. The first couple of times, you'll need to wait about an hour afterward to ensure that you don't have an adverse reaction.

Remicade works on a "loading" dose schedule initially. You will have your first infusion, 2 weeks later you will have your 2nd dose, and 6 weeks after your first dose, you will have your third. From there, it is usually given every 8 weeks. I can also be done every 6 weeks if you find your symptoms are coming back earlier than the 8 weeks.

It is scary to consider Remicade, but the actually administration of the drug is really no big deal. You'll need to watch yourself for a few days after the infusion in case of a delayed allergic reaction, but that is pretty rare.

Remicade has given a lot of people their lives back. I hope it works for you. Good luck!
Posted 4/24/2011 2:47 AM (GMT 0)
Don't be scared; it's going to get you well again as it has for many : )
Posted 4/24/2011 6:33 AM (GMT 0)
I know how scary it is...after two years of no success with other medications, I started Remicade last July. I haven't felt this good in almost 3 years. My treatment starts at 11:30 and I am usually walking out by 2:30...the first time, they held me for longer to make sure I was okay. The remainder of the afternoon after my treatment, I am VERY tired, sleeping most of the day. The next day, I generally take it easy as I am completely wiped out. This is not the case for everyone, but this is what I have experienced. However, if that's my only side effect...I'll take it!! Don't be scared, I am completely confident you will be feeling as good as I am in no time!!

good luck!!!
Posted 4/26/2011 3:17 PM (GMT 0)
Hi Everybody, Thanks so much for reasurring me it will be ok. :-)

Its something I knew at some point would have to happen I just get nervous. I've been on so many medications the past 22 yrs for this.

Once you have the Remicaide in your system what kind of results do you see? Are you having full stools or more solid ones? do you still go the bathroom a lot?

Does it last years or do it eventually wear out like all medications?
I wonder the longest time someone has been on it.

Thanks again :-)
Posted 4/26/2011 7:37 PM (GMT 0)
I was on it for 5 1/2 years, and my colon looks pretty darned good judging from my last colonoscopy. Not everyone reacts the same, but I'm wish good results for you!

Posted 4/26/2011 8:22 PM (GMT 0)
I have heard of one person who has been on it for 9 years. Not everyone though.

Reactions are different. Some people have immediate relief that lasts. Others have said it took about 6-7 months to see full results. Still others have had no luck at all. So hard to say.

Good luck!
Posted 4/26/2011 9:06 PM (GMT 0)
just had my first one today, check out my post. I was told to drink plenty of water the day before and bring water with me to eat normally but to try to have protein the morning of. I was so nervous this am that I could barely eat so I brought a banana w/me and at that and the nurse gave me some crackers. I got home and was tired had a bit of a headache and took a nap.
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