Remicade - fact of fiction?

[Mom2oneboy]

The more I read about Remicade the more questions I have. There seems to be conflicting information.

My impression has been that once you stop taking Remicade you can never go back on it again therefore you should stay on as long as possible. Yet, in the IBD book by Professor Hunter, he talks about using Remicade to get into remission and then stepping down to Aza or methotrexate for a maintenance med. Should you flare, does that mean you wouldn't be able to use Remicade again?

Also, does taking Aza or MTX along with Remicade really help the body not to develop antibodies against Remicade?

Sorry for all the questions, I'm just trying to make sure I understand this all correctly.

 

[Kat]

That has been what I have always read - That once you stop Remicade there is a high probability your body will reject it if started again. My daughter is on Remicade and has been in Remission for 1 year. She has ever stopped the infusions. My doc says that is what keeps her in remission along with her Pentasa.

 

[rygon]

Yes its not definate but your body can develop antibodies if you stop it (although you can develop them whilst on them, but think theres more probability if you stop)

My nurse said they like to keep people on it even when they feel good.

Aza helps lower the immune system so theres less probabilty you are able to develop antibodies against remicade

 

[moogie]

I talked about this with my doctor last timeI saw him.

I take remi every 6 weeks. I am now feeling a lot better. However during my last visit he was telling emt hat soon we will be going back to 8 weeks. I asked him why and he says it's better since there are still some things we are not 100% sure about remicade to use it just enough for your needs. I then ask him about stopping and he says once I stop it's game over for remicade. So it's a nono unless my body start rejecting it. So according to my doctor if you stop you are not going back on it.

 

[puddle_of_worms]

Last time I went for a remicade infusion, the nurse told me that its more likely that the body wont respond to it once you've stopped remicade, and then resumed. She said the longest that any one person has been on it is 16 years, and this was one of the participants in the drug trial.

I met one man who stopped receiving remicade after requiring surgery, and then resumed remicade later on. When I met him, it was his first infusion after being off of it for a while, so i cant comment on the effectiveness.

 

[kllyeve]

I was also told that once you start Remicade you are on it until it stops working, or you react to it. That's one of the reasons I resisted going on it, I hated thinking I was actually that sick.

I will be adding in the methotrexate at my next appointment as I was told that would help reduce the risk of making antibodies to the Remicade.

I tolerate the Rmicade very well and am having great results with it so I am definately glad I went on it.

Good luck

 

[TeamGalway]

I guess there is an increased risk of it not working again but it doesn't always happen.

I started on Remicade in Dec 08 and stayed on it until I had to stop for a gall bladder removal surgery in October 2010.
My consultant wasn't keen on me going back on it and so despite my misgivings I stayed off it afterwards and went on imuran instead.
We had tried imuran before but only for a short while, it hadn't helped that time.
Everything was fine for a while this time but then began the gradual decline until I was getting sick everyday and was back in hospital by July 2011 :thumbdown:
August 2011 then back on the remicade, CRP levels were back to normal four days later and no reactions thankfully.
Still on it with no problems since, most recent one was last week.
So I was able to go off it and back on with no problems.

 

[macdonald88]

I started remicade in October last year I had 4 infusions then we switched to humira at the end of February as I kept getting a reaction to it. Today I have read-started the remicade so I will let you know how I get on with it the second time around.

 

[Lisaj]

I have body aches... the doctor claims that the Remicade will help this... Has anyone else used this for the Crohn's related joint problems?

 

[Jessi]

I get my infusions every 8 weeks, and have been in remission for a year.
But I just had a minor set-back.

My Remicade gets sent to my home and I have a nurse come to do it for me, but it came 2 weeks late this time around. My symptoms came back at the end of the 8 weeks, and gradually worsened up until today (10 weeks).

My doc put me on a 15 day course of prednisone to tide me over, and I finally got my infusion today. I can't know for sure yet if all is well, but I certainly feel a lot better so far.

@ Lisaj ~ I found that the Remicade has really helped me with my joint pains, as well.

 

[GatorB]

Like Jessi and some others, I get my infusions every 8 weeks and have been doing so for almost a year and a half.

I recently fractured my patella (knee cap) and had surgery on it. The doctor wouldn't authorize the infusion due to the liability of the surgery until after my 2 week surgery follow up.

This means my next infusion set for next Tuesday will be at exactly 12 weeks and 1 day (or 4 weeks and 1 day late). This has me really worried that I might have developed the antibodies and the effectiveness of the Remicade will be no longer.

Remicade, I am sure like most, has been a miracle drug for me. I put on some much needed weight and have ate somewhat like a normal person.

Will Remicade still be effective in my case?!

Thanks

 

[Starlight]

I've always read and heard that once stopped, it was very unlikely to be able to be restarted. Which is why I'm going to stay on it as long as possible until its no longer effective.

 

[sickinlk]

Like Jessi and some others, I get my infusions every 8 weeks and have been doing so for almost a year and a half.

I recently fractured my patella (knee cap) and had surgery on it. The doctor wouldn't authorize the infusion due to the liability of the surgery until after my 2 week surgery follow up.

This means my next infusion set for next Tuesday will be at exactly 12 weeks and 1 day (or 4 weeks and 1 day late). This has me really worried that I might have developed the antibodies and the effectiveness of the Remicade will be no longer.

Remicade, I am sure like most, has been a miracle drug for me. I put on some much needed weight and have ate somewhat like a normal person.

Will Remicade still be effective in my case?!

Thanks

no I think it refers to being of it for a longer period of time than 4 wks. I have mine rescheduled loads of times because of illness and I was fine.
ju

 

[GatorB]

Thanks for all the information!!

 

[xSophiexx]

where i live they said that its rare and alot of patients are back on after a few years break hmmmm

 

[my little penguin]

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002580/

please read-
on how to optimize remicade and doses etc....

 

[Switalski]

I was on Remicade doing well, but took a 16 week break due to surgery. I hade 3 or 4 infusions afterwards with an adverse reaction each time. Now I'm on Humira and no reaction.

 

[sickinlk]

so a few weeks would probably be ok and after that you're risking a reaction.
switalski, did the remicade affect your healing from the surgery?
ju