Humira stopped working😞

[peluchde]

I've been on Humira since Dec, 2010 and I've recently started getting obstructions and pain again. My doctors are discontinuing the Humira after seeing high levels with low antibodies. They said it's just not doing its job any longer. So now, I'm starting on Imuran and Prednisone. Not happy about the steroids, but not sure what else I can do. They said Remicade is the same class of drug as Humira and wouldn't work for me. Anyone out there with this same predicament?

 

[SCCrohnie]

What about Cimzia? I previously took Remicade and now take Cimzia.

 

[24601]

It sounds like a fast acting treatment might well be needed given your current symptoms and other than steroids, your only choice now would be Exclusive Enteral Nutrition where you drink a liquid formula like Modulen, Ensure or Fortisip instead of eating normal food. It helps reduce inflammation in a similarly short timescale to steroids and is good for mucosal healing. Have you ever tried EEN before?

As SCCrohnie said there are now newer biologics like Cimzia/certolizumab and Entyvio/vedolizumab - I've linked the sub-forums where you can read more about other people's experiences of these meds.

Sorry to hear you're going through a difficult time and that Humira has stopped working. It's certainly worth talking to your doctors about these other treatment options. Wishing you lots of luck in finding a good treatment for you.

 

[Clash]

Many who lose response to remicade move to humira and vice versa. My son built up antibodies to remicade and is now on humira.

I'm going to tag my little penguin as she has a son who also made the switch.

 

[DJBHeat]

Before I was put on Remicade I tried Humira. Humira never worked for me, was put on Remicade and it's been a lifesaver. Best of luck

 

[my little penguin]

Not sure why remicade wouldnt work for you ....
If Humira worked in the past but recently stopped working then remicade should be
An option can you get a second opinion

DS was on remicade first had a reaction after 8 months and then moved on to Humira in 2013 .
He has been on it ever since

 

[peluchde]

Well, the doctor's at the Mayo in Jacksonville were my second opinion. I would rather try Remicade than the Imuran and steroids. The steroids can't be long term and then what? I know Cimzia is the same as Humira, so I guess they think that won't work either. I'm seeing my local doc on Friday, so hopefully he has more info for me.

 

[Clash]

Yeah I have no idea why they wouldn't try one of the other tnf alpha blockers. My son built up antibodies to remicade because he had to take a break for surgery. So we have now moved to humira, just because you build up antibodies to one doesn't mean you can't use another.

Now there are some people who don't respond to tnf blockers because their disease isn't influenced mainly by tnf but there are other biologics that work differently that can be tried like entyvio. But if you responded for a long time to humira then odds are you'll get response from remicade or cimzia.

 

[Lisat]

Interesting, peluchde. I had the opposite problem. Success with remicade for many years but recent trouble resulted in tests showing high antibodies to it. My dr also felt that humira was much like remicade. Therefore, he wanted me to try cimzia. My insurance denied, requiring that I try humira first. Other than stating that's their protocol, I don't know why. Some on this forum have had the same results with remi and humira--antibodies or reaction, while others have said one can still work if the other failed. I'm waiting for darn Walgreens special pharm to call re delivery, so I can start something soon! Been on pred for several weeks and it's not helping
Dr should def try some biologic for you! I bear that remi works the best and it did for me. Good luck.

 

[SupportiveMom]

There are many that move to Humira after Remicade and it works for them. Though it is the same class of medication, they are made differently and shouldn't be discarded because you take one in the class & it fails. As you can see by my signature, my kid has been on many different Anti TNF medications, and finally Simponi is the first med that she responded to. Her doc is thinking of moving her to Entyvio, which is another anti TNF med.

It is worth trying them to see what you can respond to. Who knows how you will achieve remission until you try!

 

[peluchde]

Doc has stopped the Humira (levels high, no antibodies) obstructions and ulceration so, etc. Flaring right now. Put me on Imuran and Entocort to reduce the inflammation. Blood test in 4 weeks. He said Remicade may be used in the future, but we need to do this right now. Sure hope it works. So hard to teach a class of 3rd graders while in pain

 

[SupportiveMom]

I hope you get your flare under control soon. Sounds like a good plan until you can start on Remicade. I hope the Entocort kicks in soon for you. It is the one drug my kid hasn't been on & goes straight to prednisone.

I used to teach 4th grade & 2nd grade. It isn't like they will understand why you can't be active and all over the place. Take it as easy as you can & the little ones let you!

 

[peluchde]

I have such bad side effects from the Prednisone, so I asked if we could substitute the Entocort and it was approved. Happy about that

 

[Eilujala]

Hi! Tell us how the Imuran works.
I am currently still taking Humira (since Sept 2014), but it stopped working 3 months ago, so I just started taking 6-MP as well.
Prednisone and Budesonide didn't work for me and I dont want to jinx it but I think the mercaptopurine might be working. I hope the Imuran works for you. I think theyre similar.
I admire your ability to teach 3rd grade at all, let alone while fighting with the disease.

 

[Lady Organic]

Give a chance to Imuran and if you fail it, be positive for other biologics. I dont always share the opinion of my caregivers ans sometimes, I have been right. As patients, we sometimes have to push for what we believe in and what we want to try. Being positive is part of the solution. We are all unique and different and there is no ''Truth'' or predicament regarding treatments and disease courses. wishing you well on Imuran.

 

[peluchde]

Well, I've been on the Imuran and Entocort for a little over two weeks and I'm feeling much better, I know it's the Entocort because I was told the Imuran would take 6-8 weeks to begin working its magic. Steroids have their plusses and minuses and right now I'm chalking up the credits. Thanks to everyone who has responded. This site is keeping me going

 

[Eilujala]

Lady Organic, I like what you wrote - it's helpful perspective. I am still learning these drugs so mistakenly thought mercaptopurine and imuran were the same, and different from purinethol but your story clarified. I'm actually on Mercaptopurine so I was happy to see it worked for you when all of those others failed.

 

[Lady Organic]

yes they are very very similar drugs, but yet not exactly the same. Sometimes, even the generic vs the original can make a difference, as it would be the case with Imuran and its generic Azathiopurine (my GI recommends Imuran, the original). I clearly failed Imuran but right after I insisted on retuning to purinethol and contrary to popular belief, it brought me back to remission. i tend to believe very few doctors would propose to try purinethol after Imuran or vice versa if one or the other previously failed. Any chance I can have, even if minimal, I always want to take it and try it. the only way to know is to try it.