newbie to Remicade

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

misspriss82
Regular Member


Date Joined Mar 2008
Total Posts : 221
   Posted 2/2/2010 7:55 AM (GMT -7)   
After being constantly put on steroids for two years.... I finally switched Dr's and my new one wants to put me on Remicade! I was excited at first to have a change, but now I'm scared! I get my TB test today to make sure I can start on the remicade, but after reading other forums, I don't know if this is what I should do!

For those of you who have been on Remicade before or are on it now...


1. how long have you been on it?
2. How long does it take to start working?
3. How long is the IV that you're sitting in the office getting?
4. side effects?
5. the whole immune system thing is what scares me most, I work with people everyday as a skincare therapist, am I going to get really sick and die?!
27y/o, diagnosed with Crohn's Disease at 25 y/o
Asacol 400mg 3 pills 3x daily
Starting on Remicade soon..... and I don't really know anything about it!


mv4au
Regular Member


Date Joined Jan 2010
Total Posts : 37
   Posted 2/2/2010 9:39 AM (GMT -7)   
I am pretty new to Remicade, but I hope I can help you a little.  I was hospitalized back in December.  They found out I had an abcess and 2 fistulas.  Before doing surgery the docs agreed to try Remicade.  I have had 2 treatments and go for my 3rd tomorrow.  I was very worried and nervous as well, but I must say this drug is amazing.  I went from having diarehha about 10 times a day to not having it at all!!  Sometimes I have to stop and think if I have had a BM!  It takes around 3 and 1/2 hours for the actual treatment.  It makes me sleepy since they pre medicate you with Iv benadryl, but that is the only thing I have noticed!  It really isn't bad at all!  I was nervous before the first one, but now it is no big deal!  I work in a hospital so I know all about being scared of getting sick!  I actually had a little cold this weekend, but was fine by Monday. Believe me I am surrounded by sick people!  I hope this helps you some!  Good luck! 

31 year old female
diagnosed with Crohn's disease July 2006
12/09 discovered  I had 2 fistulas and an abscess
Recently started Remicade 12/09 in hopes to avoid surgery


Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 2/2/2010 9:49 AM (GMT -7)   
Hi Miss Priss,

I was diagnosed last July and was put on Remicade right away. Here's my experience, though everyone's are different:

1. how long have you been on it?
6 months

2. How long does it take to start working?
I noticed a difference in 2-3 days

3. How long is the IV that you're sitting in the office getting?
The actual IV once it gets started takes about 2 hours but the whole process takes about 3 to 3.5 hours (with the prep, waiting etc.)

4. side effects?
I have not noticed any side effects, although I am always afraid of the rare but possible ones

5. the whole immune system thing is what scares me most, I work with people everyday as a skincare therapist, am I going to get really sick and die?!
I was really worried about getting sick all the time, but I'm very careful about washing my hands and, knock on wood, it has seemed to have worked out so far


I was extremely scared of taking it, but I wanted to get back to work and out of the hospital, and it allowed me to do those two things. I just recently had a flare and had to move my infusions from every 8 weeks to every 6. Thankfully it is still working for me, but I fear the day where it may lose all its effectiveness. In the meantime, I am very thankful it works and it makes me feel like myself again. I hope it does the same for you. Good luck!

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 2/2/2010 11:27 AM (GMT -7)   
Hi Miss Priss,

My husband was diagnosed with Crohn's disease in April 2008, while he was in the hospital for a c-diff infection. Needless to say, he was in really bad shape - he lost 45 lbs and spent around 45 days in the hospital, and they tried high doses of solumedrol (steroid 120 mgs), but it made no difference at all. Bowel rest didn't make things any either either. The surgeon was following my husband, and he described the surgery - my husband was to have 2 stomas - one for the small intestine, and the other for the remainder of his colon to weep into after the resection. So, we were at the end of the tether. My husband's GI suggested remicade, even though it was dangerous to take remicade while he was still on antibiotics for the c-diff infection . . . but he felt, if he was headed for surgery anyway, we ought to try remicade . . .and remicade changed everything for the better!

1. how long have you been on it?
My husband had his first dose of remicade on April 10, 2008. So, he's now been on it for nearly 2 years.

2. How long does it take to start working?
He felt a little better 2-3 days after the first infusion. He felt _major_ relief after his second infusion.

3. How long is the IV that you're sitting in the office getting?
With the prep and the infusion, it usually take about 3.5 hours. He gets both 40mgs of solumedrol and IV benedryl, and he dozes for the most part.

4. side effects?
He does have an infusion reaction - for about 2 days after the infusion, he runs a fever and his whole body aches, and his joints are painful. But he combats that by taking 20 mgs of prednisone the day before the infusion, and gets a 40mg dose of solumedrol before the infusion - and this makes the fever and joint pain go away . . . he just feels tired for a day after the infusion, if he gets his 2 day steroid regimen.

5. the whole immune system thing is what scares me most, I work with people everyday as a skincare therapist, am I going to get really sick and die?!
My husband has not even suffered a cold since he started the remicade. He has had more problems with c-diff than with anything else, but antibiotics work for that, so he's ok. He also has had issues with warts on his feet, but he had that before he started the remicade, so I don't think remicade is a contributing factor there.

Remicade gave my husband his life back. It gave me back my husband, with no stomas, no surgery, and a normal life. I am thankful for remicade every day. My husband is now on a every 6 weeks regimen of remicade (not for crohn's, but because he had an episode of reactive arthritis - they are hoping that they can move it back to every 8 weeks soon). Remicade is a dangerous drug, but it is also a wonderful drug when it gives you back your life!

I wish you all the best, and I hope you get the relief you need from remicade.

Hugs,
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


dodger84
Regular Member


Date Joined Jan 2008
Total Posts : 37
   Posted 2/2/2010 1:26 PM (GMT -7)   
I was diagnosed in 2001 (age 17)
 
1. how long have you been on it?
I've been on Remicade since August 2005 (with a 3 month break in 2006-07)

2. How long does it take to start working?
I went from MISERABLE to great within a week.  I noticed a huge difference within 2 days.  Best of all, no more prednisone.  I still have flares but much less frequently and they typically are resolved after the next infusion.

3. How long is the IV that you're sitting in the office getting?
First time was 3-4 hours.  Now 2-3.  If you meant length of the IV tubing, I'd say about 7-8 feet.

4. side effects?
Sleepy the day of due to benadryl, had a rash one time.

5. the whole immune system thing is what scares me most, I work with people everyday as a skincare therapist, am I going to get really sick and die?!
I'm going on 5 years with Remicade and haven't died yet.  I actually been sick with an infectious disease less frequently than my fiance (who has been sharing her germs with me the entire 5 years).  Hopefully I won't die anytime soon - I'm cautious but not paranoid.
 
Good luck to you!

Angela N
Regular Member


Date Joined Jan 2006
Total Posts : 82
   Posted 2/2/2010 1:53 PM (GMT -7)   
I used to do the Remicade but not anymore. You have the IV for about 3.5 hours.....The only side effect I had was that I bruised very easily. I quit taking it because of insurance purposes...I switched jobs, so I had to stop..I now do cimzia...ITs two shots that I get. It's suppose to be compatabile to the remicade. The good thing is you don't have to sit with an iv for 3.5 hours. I did have one flare up and had to have surgery about a year ago. Since then I have been good..hope this helped you some..
Diagnosed with Crohns 15 years ago...After my sugery 15 years ago I havn't had any flare ups until now...I am currently taking Pentasa and the Cimzia shot..I am 43 years old..


misspriss82
Regular Member


Date Joined Mar 2008
Total Posts : 221
   Posted 2/2/2010 2:50 PM (GMT -7)   
THANK YOU TO EVERYONE!!! This has truly helped me to feel better about being put on Remicade! I can't wait to start feeling better and for me to be myself again! :) I am soo hopeful that this will work and if I have normal BM's again I seriously won't know what to do with myself!! HAHA

-I am still scared - but just about the iv part. I REALLY hate needles!! But the sleepy part sounds like it won't be that bad if I can sleep while i'm getting it;

can you drive yourself to and from the treatments or does someone need to be there with you?
27y/o, diagnosed with Crohn's Disease at 25 y/o
Asacol 400mg 3 pills 3x daily
Starting on Remicade soon..... and I don't really know anything about it!


Sarah_B
Regular Member


Date Joined Feb 2009
Total Posts : 82
   Posted 2/2/2010 3:04 PM (GMT -7)   
I just wanted to comment on the immunosuppression. I have not started Remicade yet (I'll be starting on the 22nd), but I have been on two other TNF alpha meds and I noticed an increase in upper respiratory infections when I first started. After a few months of that, I started carrying around a bottle of hand sanitizer wherever I went and that pretty much took care of it. I think I have maybe had one cold in the past six months or so. If you have a lot of interaction with people daily, I would definitely recommend it.

22 years old, Female.
Diagnosed with Crohn's Ileocolitis November 2008.
Currently taking 6MP, 7.5 mg prednisone.
Hoping to start Remicade soon.


FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 2/2/2010 3:38 PM (GMT -7)   
I was just told today that I am going to be started on remicade. When I was on imuran, which also surpressed the immune system, I took Vitamin D. 400iu twice a day. I was getting sick less often than before the imuran. Can't scientifically say for sure it was the Vitamin D but this experience as well as research supports the idea. So ask your doctor how much Vitamin D you can take with the remicade and do it.

I carry mail so have a lot of exposure to people too. I also have hay fever and am constantly putting a finger in my nose or in my eyes etc.

GOOD LUCK TO US!!!
 


dodger84
Regular Member


Date Joined Jan 2008
Total Posts : 37
   Posted 2/2/2010 3:41 PM (GMT -7)   
--can you drive yourself to and from the treatments or does someone need to be there with you?
 
My doctor tells me that I am supposed to get a ride home (because of the benadryl) so I always tell her my ride is waiting for me and then I leave to drive myself to work.  If you have a low tolerance for Benadryl, you should probably get a ride home, especially if you do not live close to your infusion center.  The Remicade itself should not affect your ability to drive.
 
Also I need to agree with those saying to take precautions such as hand-washing etc.  A little bit of simple preventative measures are definitely worth it when you are at an increased risk of infection.  Don't become obsessive, though!

2kidswithcrohns
New Member


Date Joined Dec 2009
Total Posts : 5
   Posted 2/2/2010 4:51 PM (GMT -7)   
Hi MissPriss,
I completely understand your fears and questions. Here's my son's experience (he's 16).
Background: He had been on 6mp since 2004 diagnosis, had resection in 2007, went back on 6mp & Pentasa (and vitamins) grew about a foot, and weighed 158 at the start of fall 2009. A fall flare dropped him to 138 in a couple months, low energy, etc, (and he's an athlete) so his doc figured 6mp was no longer effective and tests confirmed thickening... We opted for Remicade and thankfully our insurance covers 100% (yes it is terrific!).

First Remicade infusion end of December 2009
Second infusion January 2010
Will have third next week
Count on being at the hospital or clinic a minimum of 3 hours. The nurses can be terrific - no need to fear needles! I recommend you have someone drive you the first time, then take it from there.

He has noticed a big change in appetite and regularity of bms. He has had no adverse side effects, other than tiredness immediately following. (benadryl contributes!) He does not have the energy to return to high school the day of infusion, but that might just be him! We watch carefully and are VERY OPTIMISTIC that Remicade has sent him fully into remission. Last night he was back up to 148 pounds - woohoo!
All the best to you as you make this difficult, personal decision.
MP

Harley Behavin
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 2/2/2010 5:17 PM (GMT -7)   
Having MY Infusion tomorrow.  I was diagnosed with Crohn's in April of 2009 and started Remicade in August.  Coudn't take Pentasa and was on the steroids for a small time.  Glad i'm not on either. Since I've been on Remicade my life has changed, and for the better.  Sometimes you can have a side effect of rash or itching, but that's supposed to be what the Benedryl is for.  I've never had either.  Just tired though.  I think you will be amazed at how much your life will change with remicade.  Good Luck 

redone
New Member


Date Joined Nov 2009
Total Posts : 19
   Posted 2/6/2010 9:13 PM (GMT -7)   
1. how long have you been on it? 2 months, just had 3rd infusion this week.

2. How long does it take to start working? I've been in remission since I started so I see no difference

3. How long is the IV that you're sitting in the office getting? 2.5 hrs

4. side effects? Really tired for a couple of days, and I have sore joints for a few days after too..this time even seemed worse than the other 2 treatments for some reason.

5. the whole immune system thing is what scares me most, I work with people everyday as a skincare therapist, am I going to get really sick and die?! I have grubby little kids bringing me germs home all the time and so far I have not been super sick, I had a small throat infection, I didn't even go to the dr. or get antibiotics ( I never do) and I got over it just fine.

I really didn't want to start taking remicade, mainly because I was not having a flare at the time :) But then I thought..what if? hrmmm...I don't want this to come back, so I did it.
37 y/o female.
Diagnosed in 2001
Current meds: Entocort, Vitamin D & Calcium
Starting Remicade on December 3, 2009


ky_girl
New Member


Date Joined Feb 2010
Total Posts : 11
   Posted 2/7/2010 12:01 AM (GMT -7)   
I've been on Remicade since October and just had my fourth dose last week. :)

So far I like it pretty well. I started Remicade a week after my Crohn's diagnosis and I haven't had a flare yet, and I feel like a completely different person - sooo much better than before they finally figured out what was up with my insides! Getting the IV typically takes 2.5-3 hours, depending on how quickly they can get it mixed and hooked up. Sitting there does kind of suck but it's pretty good reading or web surfing time. ;) The only side effect I've had is tiredness; it wasn't as bad this last time around but the dose before that, I was practically catatonic for the rest of the night. They always give me Tylenol and Benadryl before starting the IV, that helps prevent any adverse reactions. I was worried about the immunosuppression as well, but my doc made sure all my immunizations were current and advised me to take a daily vitamin and I've come through flu season without so much as a cold - my sis had bacterial pneumonia at the same time I started Remicade at about three weeks post-op from my resection and I didn't have any problems even then. Take your vitamins and be conscious of washing hands and such and you'll probably be just fine. OH and if you're worried about the IV be sure to drink lots of water before you get it, that will make it easier for them to find a vein. :)

Good luck to you! Hope everything goes well.
Leslie, 22
Diagnosed with CD October 2009
Bowel resection/appendectomy and 2-week hospital stay, October 2009
Currently receiving Remicade


pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 2/7/2010 1:42 AM (GMT -7)   
1. how long have you been on it?
about 9 months.
2. How long does it take to start working?
A few days.
3. How long is the IV that you're sitting in the office getting?
2.5-3.5, depending on how quickly the Remicade gets made and how quickly the nurses get everything done.
4. side effects?
I feel pretty worn out for about 36 hours afterward, and my knees are usually pretty sore for a couple days after. Nothing too terrible, though.
5. the whole immune system thing is what scares me most, I work with people everyday as a skincare therapist, am I going to get really sick and die?!
It by no means incapacitates your immune system, I've never gotten sick while on Remicade.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.
Resection December 2009

Amor fati - Nietzsche

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 09, 2016 4:51 AM (GMT -7)
There are a total of 2,735,238 posts in 301,285 threads.
View Active Threads


Who's Online
This forum has 151390 registered members. Please welcome our newest member, Clauddfin.
218 Guest(s), 6 Registered Member(s) are currently online.  Details
SpecialLady, reminder, Stanislav, gilly2, Not-there-yet, ljimd


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer