Starting Remicade and scared

[Mntallyblonde]

I've been on pred for about 6 months now and every time I get down to about 15-10 I flare.:depressed: So now my doc wants to try remicade. I'm so scared I go into the doctors on the 3rd on November to start. What should I be ready for? What are some side effects that could happen to me? I haven’t told anybody that I work with yet about crohns b/c I didn’t want them to think I couldn’t do thing. I wanted to be normal there. I'm going to ask for the 3rd and the 4th off from work just in case anything weird happens.

 

[devildee(donna2005)LOL]

Hi
Ive never been on remicade but i just wanted to wish you lock on the 3rd ((hugs))

 

[wi_girl]

I get remicade treatments.Its not bad.You just sit in a room with an iv for 2 hours.Sometimes youre in a room with other people also being treated.I was nervous my first time but I didnt end up with any side effects after.The nurse will explain every possible side effect if you ask.They should give you a pamphlet ahead of time that lists possible side effects.Good luck.

 

[mikeyarmo]

Wi_girl sums it up pretty much.

Some side effects include nausea, red flushing of the face and headache.

 

[Mntallyblonde]

Thanks guys I'm still really scared though. Two hours thats forever!

 

[Skinsfan1229]

Some side-effects are life threatening, but there are life threatening side effect POSSIBILITIES with any drug.

The worst side effect you may encounter would be a red rash type thing around the IV site, which would be because of the mouse protein.

Your flaring when getting down to 15 to 10 mg of prednisone because your body makes natural steriods...when you get taking 15mg or above of prednisone, your body realizes your getting to much then normal, so it stops making the bodies steriods, it should start working again once you taper to 15 mg, this is the reason WHY they taper you. BUT some people dont start making the natural steriods again, and you sometimes have to go up to 20mg or so again for a little while longer then normally other mg dosages, this usually helps the body start again. Dont really worry about prednisone dependency, MANY people have it, and I've been on steriods for about 15 years on and off.

 

[andilynn09]

I also can't tell you from experience about Remicade, but I'm about one step behind you. I think they're going to give the Imuran another 4-6 weeks, and then probably onto Remicade if I'm not able to get off prednisone AGAIN (will be 4th time i've tried in last couple months). Just wanted to wish you good luck!!

 

[chadta]

Chin up, i get remicade every 8 weeks, and honestly i feel better the day after i get it. One thing nobody mentioned or maybe its just me, but im exhausted after getting remicade, im basically done for the day. But when i wake up the next day i always feel great.

Good luck and i hope everything goes well for you.

 

[dmateo]

-dont be scared at all
-all they do is put an iv in your arm and pump a clear medicine in your body for two hours
-i hate needles and i go do it all the time
-what you should do right before is drink plenty of water so your veins are hydrated otherwise the needle may stick to the walls of it an they may have to try again.
-during the infusion they monitor your heart rate and blood pressure
-the medication lowers your heart rate and the may even give you benedryl
-that will make you really tired and youll probably sleep through it.
if not youll be bord out of your mind so bring a book or talk with other crohnees about their medications. you'll learn alot.
-the only thing you should be worried about is your body rejecting the medication by allergic reaction, remicade is one of the newest meds that actually get results and promotes remision so if you are allergic a better alternative will be hard to find.

 

[Skinsfan1229]

Good point about being pretty hydrated when going in so your veins are larger, and you have easier access.

 

[Mntallyblonde]

Chin up, i get remicade every 8 weeks, and honestly i feel better the day after i get it. One thing nobody mentioned or maybe its just me, but im exhausted after getting remicade, im basically done for the day. But when i wake up the next day i always feel great.

Good luck and i hope everything goes well for you.

Hey everyone thanks so much. I didnt have any kinda of reaction to the remicad, well besides the good kind. Yeah I was done for the day after the 5 hours it took. All I did was sleep when I got home. I slept for about two hours there. I have to go back in two weeks then four weeks after that. Then I can start the every 8 weeks. Thanks for the water tip I'll know for next time. Thanks again everyone

 

[Skinsfan1229]

You shouldnt have to worry about an allergic reaction. What this "allergic" reaction really is. is your body building anti-bodies to the medication....but you have to get the medication before it can start to find a way to make anti-bodies. Especially if you've taken it and stopped for a year or more and try to start remicade again, the risk goes up for developing the antibodies, this is why you should not use it for JUST fistulas or a one or two dose thing like some do, i never understand that, your risking a great medication not working for you again.

They'll usually just give you a couple big doses of prednisone, some benadryl, a tylenol and an aspirin before the infusion if you have stopped, each of these meds counteracting a reaction from having anti-bodies, so you'll still not have anything to worry about.

 

[chadta]

i go in for my next infusion on the 17th, an im actually looking forward to it, there is always cute chicks in there, last time we watched the southpark movie, the nurse there is really nice and lets us watch whatever we want, ive even been told i could bring my playstation in and hook it up to the tv as long as i bring enough controllers for everybody.

gald everything went well MB

 

[Skinsfan1229]

wow 5 hours you've waited before? I've waited that long once, then I changed locations I got it done at and it took the right amount of time...2 hours, anymore then that and their not speeding it up on time.

 

[Valentina]

my first one was 5 hours, slow on purpose because Ive reacted to other meds. they also shot me up with steroids, benadryl and tylenol half an hour before.

I was also very scared for my first one.. honestly up until number 4 or 5 I was still a bit scared. now I look forward to it.. I know its going to make me feel better, and I get 3 hours to sit and relax. not bad at all
good luck with it, I hope you get good results with it.

 

[Skinsfan1229]

I wasnt scared at all. I assumed that this was the drug that would keep me out of the hospital, I had been in for 3 or 4 months before trying remicade. Maybe thats why I had such a good result, I was open minded and expecting almost for it to "fix" things, I didnt know anything about CD at the time.