Remicade..how long?

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Mimi3
Regular Member


Date Joined Feb 2003
Total Posts : 54
   Posted 8/26/2010 9:15 PM (GMT -7)   
Hi Everyone,
 
 I have been in a med induced remission for 3 years..life was great... was using Budesonide then weaned off to just useing Imuran.. Well the monster is out.. Im in so much pain pretty much cant eat anything with out so much gas pain bloating and cramps when I put anything down there.. My GI is talking Remicade.. ya it scares me not gonna lie.. but I have heard different things on how long and how often it's administerd...would LOVE any feed back you all have on this drug.. I know this topic has come up plenty.. but how long have those of you been on it..been taking it and how often?
 
Mimi :S|

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 8/26/2010 10:52 PM (GMT -7)   
Mimi, the average person starts out at the 5 mg per dose every 6-8 weeks. Sometimes if you have a really conservative G.I. you may even go every 12 weeks. You will have 3 loading doses the first 6 weeks to get it in your system before going to the 6-8 weeks. If you are not responding and it is not lasting the whole time then your G.I. will probably move up your frequency to every 4 weeks and eventually raise your dose to 7.5 per and then to 10. I have been receiving mine evey 4 weeks at the 10 per dose for 6 1/2 years. I did have a brief hiatus when I tried humira and cimzia for a year but then returned to remicade. I premedicate with cortisteroids, benedryl I.V., and zofran to help make the medication work without having a reaction. Your doctor may premedicate you right away but will for sure once you have been on it a couple of years.
It is alright to be a little nervous when starting this medication but understand that the pamphlets make it a lot scarier than it really is. Prednisone is a harder medication in my opinion than remicade and causes much more damage. There will be nurses with you the whole time to make sure that you are doing great and will be taking your vitals every 15 minutes the first half and 30 minutes the second half. Ask for a warm blanket because the medication is at room temp and will make you a little chilly. I also bring an ipod, book, and my own blanket to make myself comfortable. Take advantage of the time to relax and get to know the nursing staff and other patients. There is a good chance that if you get your infusion at the hospital, that you will be in the same room as chemo patients. They are so inspiring to speak with and to get to know. I have found that by talking with them I feel much better about my disease and am grateful for the blessings in my life. I would be more than happy to answer any other questions for you.

Mimi3
Regular Member


Date Joined Feb 2003
Total Posts : 54
   Posted 8/26/2010 11:05 PM (GMT -7)   
wow...thanks so much for taking the time to explain that in such detail.. I appreciate it very much.. I had no idea some of you take it such long term.. I had to be on prednisone when first diagnosed so know the horrible side effects of being on that drug long term.. it does make me nervous about taking it... but you have for sure made me feel better..and for that I thank you
 
Mimi

ZenaWP
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Date Joined Aug 2007
Total Posts : 884
   Posted 8/27/2010 6:34 AM (GMT -7)   
I started out getting it at home with the home health nurse, which was nice because I could sit on the couch.  I thought I would watch TV or whatever, but I usually talked to her for the entire 2 hrs.  I started out getting it every 8 weeks.  When I started to lose response, we bumped it up to every 6 weeks.  Then I started having allergic reactions and went from doing it at home, to the infusion center at the hospital (and I was the only one in there...no one to talk to), to getting admitted for 23 hours and having the IV ran over 19 hrs.  Ended up not being worth it since the reactions got very scary and I had developed antibodies to where it wasn't working anymore anyway.  So, I was only on it for about a year.  But, it did get my Crohn's in remission.

Mimi3
Regular Member


Date Joined Feb 2003
Total Posts : 54
   Posted 8/27/2010 11:16 AM (GMT -7)   
Wow Zena,... that doesnt sound like a whole lot of fun...I know we all react different to all the different drugs... so far I have been very lucky with most of the drugs I have taken..Prednisone got to me after long term use.. but I think that is pretty normal... Not sure how long the Remicade normally take...if anyone knows.. I would love to know



Mimi

Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 8/27/2010 11:21 AM (GMT -7)   
I loved Remicade. It gave me my life back, healed my fistulas, and I was absolutely 100% symptom free for 2 years. But all good things have to come to an end, I suppose, because I developed antibodies to it and we had to stop.
 
Remicade has been around awhile. I was on it when first diagnosed, I guess it's been 7 years or so ago? And there were people on it before that. It's newish but not brand new so some longer term side effects have been reported. I had no issues, until I built the antibodies to it, and the vast majority of people don't either. The risks of any drug are scary - even things like Tylenol and Benadryl - but sometimes the risk is better than the life we are currently leading.
 
I was under 3 different GIs care while on it; two had it done in office and one had it done in the outpatient area of the local hospital.

Djin
Regular Member


Date Joined Jan 2010
Total Posts : 265
   Posted 8/27/2010 11:32 AM (GMT -7)   
One year and a half, and it is still working.

Not a FULL remission with free diet, but a honest one, with some precautions.

Still taking it every 8 or 9 weeks. Even like the day off it gives me :))).
Male, 35 (lovely family of wife and two daughters)
Diagnosed in nov/94 - Started with Prednisone, followed by Pentasa, entocort, flagyl, Imuran, Cipro, etc.
Blockage (popcorn!!) - First Surgery 2001 (no ressection)
Severe bleedind - 2003 - Stopped by 60mg of Prednisone
Stricture leading to a ressection in Dec/2008 - Second Surgery
Now on Remicade + 100 75mg Imuran + Iron (doc said i'm in remission, but I'm not sure at all)
 

MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 8/27/2010 11:35 AM (GMT -7)   
This is year 7 of Remicade for my Daughter. It has lost some effectiveness over the years to where she has had it upped to double dose and currently at triple dose. They would like to increase to quadruple dose but daughter is refusing. Also on Imuran and Asacol.

She has had her infusions at varying lengths with the average being every 8 weeks but has had infusions at 4 weeks and as long as 10 weeks.

I have read of one case of a young lady who did well on Remicade for almost 10 years. She was one of the first Pediatric IBDers to give it a whirl when it was first approved for IBD.

Is Remicade scary? Yes, took about a year to even to decide to go that route. But it did bring back quality of life. Not 100% perfect but way better than before Remicade. Not too thrilled with the triple dosing though and why my Daughter refuses quadruple dosing. You rarely read about triple and quadruple dosing.
Mum of an IBDer since 1999. Daughter diagnosed at age 17 with Crohns/Colitis. This disease s*cks!!

mdf34
Veteran Member


Date Joined Feb 2010
Total Posts : 925
   Posted 8/27/2010 12:27 PM (GMT -7)   
Oh and how long does an infusion session take?

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 8/27/2010 12:46 PM (GMT -7)   
mdf34, my first ones at home took about 2 hours.  After a few, when I didn't react, she would speed it up and get it done in about an hour and a half.  After I started having reactions, I had to go to the hospital to have it done.  They were supposed to admit me for 23 hours so I wasn't a real "admission" to insurance (which is 24 hrs) and the drug was supposed to be infused over 12 hours so that my body wouldn't recognize it and fight it.  But, for some reason, it actually was infused over 19 hours.  So, you can see where that would get old really fast...not a great way to spend the weekend every 6 weeks.   

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 8/28/2010 2:10 AM (GMT -7)   
Mary S. What do you mean double dose and triple dose? What dose is your daughter currently on? I am on the max dose which is 10 per every 4 weeks and it has been really effective. I have been at that dose for 6 1/2 years and while I have never achieved complete remission I definitely know that it is helping. Why is your daughter refusing to go to the higher dose?

MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 8/28/2010 4:53 AM (GMT -7)   
tsitodawg - I can't say that I know the exact number of her double and triple doses since she lives out of town and I no longer accompany her to the infusions. I just assume double and triple is double and triple of what she got as a single dose based on her body weight or somewhere in that range.

Nicole is refusing quadruple dose because she feels her body is taking in enough toxic meds as it is. She would prefer to be off of Remicade altogether because she feels it is causing her other health issues, which it is because it is an immunosuppresant, but her GI is resistant to moving on to anything else yet since Remicade is still working to some extent.

7 years of infusions is wearing her down. No veins left. Her GI doesn't think Humira will work much better so have no clue what might come after Remicade. She loves her GI, he is first and foremost an Immunologist, also a Researcher and Educator out of Mt. Sinai in NYC, but she is ready for a new opinion methinks. Daughter is a young adult thinking GI might be getting some kickbacks from the manufacturers of Remicade and why he is resistant in trying something else and trying to up her dose again to quadruple.
Mum of an IBDer since 1999. Daughter diagnosed at age 17 with Crohns/Colitis. This disease s*cks!!

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 8/28/2010 7:23 AM (GMT -7)   
Husband has been on the 5mg dose every 8 weeks for a little over 2 years now. So far so good, knock on wood. The only side effect he has from Remicade is flu like symptoms for about 48 hours after infusion, with severe muscle pain. He is premedicated with solumedrol and benedryl to try to control the flu like symptoms, and taking tylenol for 2 days after pretty much keeps him comfortable.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission
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