Failed Remicade: Treatment Options

[whyclef]

Unfortunately, I had a reaction to Remicade after 12 months of successful treatment with it. Due to that reaction my IBD physician is ready for me move on to another treatment. I am also ready since I have started flaring after failing Remicade with active disease in my colon. He gave me the following options:

1. Humira

2. Entyvio

3. Clinical Trial

Any recommendations or studies you are aware that are the best course of treatment after failing Remicade?

 

[jjk308]

If Remicade was working then try Humira. It has the same sort of mechanism as Remicade but uses human proteins instead of the mouse protein chimera that probably caused the reaction. Same thing happened to me but it only took 2 infusions.
Humira worked very well for me for about 6 years, but I recently switched to Entyvio as I started to get flareups. Entyvio supposedly isn't as effective as Humira but so far it seems to be working OK.

 

[Scipio]

I would try them in the same order in which you have listed them, with the possible addition to consider additional anti-TNF biologics (Cimzia and Simponi) after Humira but before moving on to the Entyvio.

 

[Honey]

Hi there, I would try Humira and see how you get on and how effective it is. I too had a bad side effect to Remicade after some time so had to come off it. I was on Humira injections for some months but had one side effect with me, viz, thinning of hair which stopped growing. Wishing you well.

 

[whyclef]

Thanks for the feedback, this is helpful. My IBD physician just emailed and said if my tests for Remicade antibodies comes back positive he will move me on to Humira. However, if the test comes back negative for Remicade antibodies he would like to try and restart me on Remicade by administering a steroid injection prior to infusion. I had been receiving Remicade for 12 months prior to my reaction with chest tightness, difficulty breathing, and redness. I had been given a steroid injection prior to all of my Remicade infusions until the last 2 infusions. The DR believes I had a reaction because I was no longer receiving the steroid injections which were stopped because he thought that I no longer needed them.

 

[Honey]

Hi there, interested to hear your side effect was tightness in the chest. I ended up in hospital for three weeks with a lung infection, on oxygen, very scary. I have been asked to go back on it as my inflammatory markers are sky high. Don't know what to do. Best of luck.

 

[lgpcarter]

Hopefully you will be able to go back to the Remicade. I would add Stelara to the list of options to consider if you can't. I did fairly well on it for a year before switching to Entyvio. It wasn't quote able to get me into remission, but it definitely worked.

 

[my little penguin]

Ds had two reactions to remicade
He had no antibodies btw
First reaction after 8 months no steriods just Tylenol /Benadryl /Zyrtec
Second reaction added iv steriods prior to the infusion still reacted
Steriods can not stop an allergic reactions from happening they just hopefully lessen the effects so full anaphylactic shock doesn't happen

That said Ds was placed humira and that was 4.5 years ago without issues

Good luck

 

[Eridon2002]

Were you also on an immune suppressor such as methotrexate or azathioprine while on remicade? If you go on another biologic you might want to add one of these since it will help you from developing antibodies against the biologic.

 

[Bunty]

I had almost exactly the same reaction as you...chest pressure, struggling to breathe, severe flushing, pins and needles in my arms and hands... to my last infliximab/remicade infusion. Ive had a steroid injection and oral piriton prior to the infusion every time, the reaction really frightened me although it was quickly dealt with by a piriton injection.
They're going to go ahead with my next infusion but add in IV piriton too,must admit I'm a bit anxious about how it will go.
I reacted to azathioprine so that's not an option for me.
I hope one of the options you've been given works it's magic for you.
Bunty x

 

[whyclef]

@mylittlepenguin What was type of reaction did DS experience the second time with Remicade and the steroid injection?

@Eridon2002 I have not been on Methotrexate or Aza up to this point, if I go on Humira my IBD physician has given the option to do it with or without Aza.

@Bunty Let us know how your next infusion goes with the IV Piriton

 

[whyclef]

Still flaring and I started having some bleeding, so my GI has me starting Prednisone 40mg until he gets the results from my Remicade antibody test. I was on Prednisone for 12 months 09/2014-09/2015. Not looking forward to the terrible side effects. I'm planning to take 20mg in the morning and 20mg at bedtime to ease some of the side effects. Any tips you would offer to diminish the side effects of steroids?

 

[my little penguin]

Have you tried EEN ( exclusive enteral nutrition - formula only no food)?
It can be as effective as steriods for some especially children
None of the pred side effects
Ds just stopped pred beginning of July after two months

He reaction was an itchy throat and tingling tongue which lasted a few days
Dermatologist verified there were tons of tiny inflamed "blisters " on his tongue
But
Big but here
Ds has reacted to most contrast dye
Foods
Cold water
Bees
Etc....
Extremely atopic and reactive S not a surprise

Good luck