# Upset due to antibodies to Remicade



## Lisat

After a long hospital stay, I was diagnosed with crohns in 2004.  Remicade was the only thing that worked and saved me.  I had a little trouble with it, but my providers were great and kept me in decent condition.  Unfortunately, developed various complications and I was never sure if it was the meds or the disease.  I acquired arthritis, various skin issues, including skin cancer, vision issues, including problems with corneas, iron deficiencies, aldosterone deficiency, etc.  I hoped remicade would remain as my 'savior', but I began with a lot of bleeding a month ago.  This was the same problem that landed me in the hospital and very ill 10 years ago.  Blood work showed major signs of inflammation, confirmed by a colonoscopy.  Dr also took a blood test to determine if I developed antibodies to remicade.  I received the devastating news today; it was positive, which means remicade no longer works and is not an option.  They want me to try Cimzia.  I did a little reading today, but it doesn't sound very promising.  Will it take months to work, if it works at all?
I am a healthy 'looking', active single woman and I'm concerned about coping with the injections, praying it works so I don't miss work, and maintaining a social/quality of life.  I'm pretty private about sharing my condition with people, including men.  I have appointment with dr in less than two weeks to review the details of starting cimzia.
Have any of you started cimzia after antibodies to remicade?  If so, how did it work for you?
Are other biologics an option?  Dr didn't suggest any others to me...
Does antibodies to remicade mean humira is out as an option?
Why didn't Europe approve cimzia for crohns?
Some may think that injections over 4 hr infusions is better, but I'm not convinced


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## Clash

My son developed antibodies to remicade and just started humira a week ago.

I'm not sure but I think The lead in time for cimzia is about the same as humira so about 8 to 10 weeks.

I've heard the cimzia shot is was less painful than the humira shot and the dosing schedule is, of course, different.

Good luck to you I hope cimzia works well for you!


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## 24601

If I were you I'd ask your doctor directly why they think Cimzia is the best option for you and if Humira is a possibility instead (I think it may well be) - or something else.

Are you on an immunosuppressant too? Like azathioprine. 6mp or methotrexate?

Have your doctors talked about treating this flare with a treatment like steroids or a liquid diet which can take effect while you give the new biologic time to work?

I didn't develop antibodies to Remicade but I did switch to Humira injections and, for what it is worth, I find them okay. A little bit painful but okay. 

Wishing you all the best


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## Lisat

Thanks all for the input and kind words.  I will ask the Dr about Humira; I would assume that he thinks Cimzia is a better option, but why?  
Can anyone tell me if Humira is better than Cimzia and why?
Re my regular meds, currently on:
Synthroid
Fluorinef (for aldosterone def.)
Delzicol
Plaquenil (arthritis)
Last remicade infusion 1/16

I've had several rounds of iron infusions because of problem with iron absorption.  I WAS on Imuran until a few months ago, when I asked the Dr if I could go off, since I thought I was doing well with Remicade and others.
With my latest problems, he recommended that I triple the Delzicol to 6/day, but that large quantity makes me sick.  He also prescribed a Canasa suppository daily.   I'm using the suppositories, but can't tolerate daily, because they make me so constipated, puffy, and a bit nauseous.
Overall, feeling very fatigued, not a great appetite, and sometimes feverish.  I know the bleeding is getting worse, too.  I'm pretty good at making myself eat and working out because I want to stay as strong as possible.


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## my little penguin

DS had reactions to remicade after 8 months and was switched to Humira .
The half life is 10-20 days so it reaches full potential after 3 -4 months .
It's tajen normally every two weeks and has a decent success rate for those who did well on remicade in the past .
DS has been on it for almost two years now .
You could do bridge therapy until your new biologic kicks in ( either pred or EEN -formula only no food ) Mtx boosts the effects of Humira and is also used for arthritis 
Arthritis is treated with Humira as well not sure on cimzia .

Good luck


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## Lisat

Thanks for the info on Humira.  I will definitely talk to dr about it next Friday.
Someone also asked if I tried other meds, such as steroids.  Well, I was on everything but biologics (TPN, pred, don't recall all because I was so ill) back in 2004, and nothing worked.  I had no food for nearly a month.  I was very close to losing a lot of colon and maybe worse but I started on Remicade and that saved me.  I was slowly weaned off the pred after a few months.  While in hospital, I was on IV pred.  Honestly, I didn't see relief from that, and wouldn't want to go on it again.  I swelled up and looked like a pumpkin head.  My skin felt stretched to the max and I wasn't physically any better.  Even though I'm not as bad this time, and I wouldn't be on such high dosages, I really hate to go that route.


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## 24601

I'm one of the people who mentioned steroids above:

"Have your doctors talked about treating this flare with a treatment like steroids or a liquid diet which can take effect while you give the new biologic time to work?"

But the question wasn't if you had ever tried them, instead I was wondering if you or your doctors were thinking of you using a fast-acting treatment to bridge the gap between biologics, since biologics take a while to work, as my little penguin said.

I completely understand you not wanting to go the pred route from side effects alone, but even less reason if your disease didn't respond! 

A complete liquid diet like Elemental or Modulen has an additional therapeutic effect over and above the bowel rest that you get from TPN and is equivalent to steroids in terms of being fast acting and appropriate for treating a flare. Just something that may be helpful to know - whether for now or in the future - especially for those of us who don't tolerate or respond to pred.

Best of luck.


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## Lisat

Thank you for the suggestions.  I haven't spoken to the dr about a bridge before we see if cimzia works.  My appt is next Friday, when we'll discuss cimzia and I will ask him at that time.  For now, I've been treading lightly with food.  Almost nothing raw and lots of simple carbs/sugar.  Small pieces of chicken are sometimes ok.  Scrambled eggs may be ok.  All these sweets/carbs have prevented me from dropping lbs, a good thing.  I'm Trying to work out to stay strong, but the exhaustion is really getting to me.  I suspect my H & H and iron are lower now.
I will definitely ask dr about liquid nutrition.  However, I'm confused--I thought the idea of liquid nutrition was to bypass the gut and that required IV feeding?  I'm hoping to avoid IV nutrition.  I hope that cimzia works fast?!
Meanwhile, I'm trying to work and keep up with the daily grind--quite a challenge!  Fortunately, although my boss doesn't know what medical problem I have, I told him that if I have to work from home, it's a necessity and not by choice.  He's understanding.  I'm trying to not do that until absolutely necessary, which could be soon!


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## my little penguin

Liquid nutrition lets the gut heal
Whole food takes a lot of energy to process by the body and gut 
Formula allows the body to rest
Whole proteins -boost/ensure are whole proteins so easier than whole food
Semi elemental -peptide /peptamen are broken down proteins so even easier on the gut to absorb the protein /nutrients -most can drink orally -my kiddo does 
Elemental-amino acid based ( elecare /neocate /eo28 -splash ) only require a few inches of healthy boewl to digest the nutrients so the easiest but tastes the worse  -most need a ng tube.


Here are papers on it -


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## my little penguin

http://www.hindawi.com/journals/grp/2013/482108/

Here is one

Easier on the body than TPN since its whole nutrition -not as hard on the other organs and can be done at home


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## 24601

The sort of liquid diet I'm talking about is the kind you would drink - not the kind that goes into a vein.

The proper term is enteral nutrition (although really I believe this means any nutrition delivered through the GI tract but we tend to use it for formula) whereas IV nutrition is parenteral nutrition PN, sometimes referred to as TPN (Total Parenteral Nutrition) but that should properly only be used when it's the sole source of nutrition. 

There are a whole lot of different formulas that you can choose to use for enteral nutrition which can largely be categorized as 'Elemental' which is basically broken down into individual amino acids and glucose polymers, 'Semi-Elemental' i.e. partially broken down and 'Polymeric' those with whole proteins. I think studies have shown these formulas to be largely similarly effective in inducing remission for Crohn's disease.

Some formulas are more palatable than others. There are many listed in the 'Enteral Nutrition and PN' thread here and some are available in certain countries and not others. I can recommend Elemental 028, Modulen and Fortisip as palatable enough to drink, with the last two being preferable in my opinion.

It's not easy to just stick to the liquid diet and forgo food (which is what you have to do for Exclusive Enteral Nutrition used to induce remission) but it can be very worthwhile as you can get the same effect as steroids - that comparison is used as most people's disease responds really well to steroids and it's good to know it's an alternative treatment of similar efficacy in terms of reducing inflammation and similarly fast acting! But in your case you would hopefully get a much better response than steroids!

It is more commonly used for children since it is especially beneficial for them to avoid the side effects of steroids but there is no reason not to use it for adults too.

Children will fairly often have an nasogastric (NG) tube (or similar) placed to pump the formula in to their stomach so they don't have to drink the volume required but it is possible to drink it - both for children and adults. And as an adult, with the full understanding of the benefit and motivations behind it and (usually!) the ability to drink larger volumes of liquid I think it's very doable. I think that, whether you're a child or an adult, if you try a liquid diet and find that you are feeling healthier and having a reduction of symptoms that that goes a long way to providing the motivation to keep going for the length of treatment - often 6-8 weeks.

And since we're often not able to eat normally anyway when we're flaring, as you describe, it's not always going to seem like the drastic measure that those who haven't experienced IBD would imagine.

I'm glad your boss is understanding. It is so hard to keep up with everything while dealing with all this.

I do think it's worth talking to your doctor about drinking a liquid diet - and expressing your enthusiasm to try it if you are indeed keen, as they may not favor it themselves as a matter of personal preference. I think the nutritional support alone could be useful to you, and it's therapeutic effects are proven. I don't think it sounds like you are in a position to need IV nutrition right now, and that's much riskier and less beneficial in terms of reducing disease activity.

Here are just a few papers in case you'd like to take a look:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1379249/pdf/gut00593-0074.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2084047/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3837264/

Edit to say I was typing this while my little penguin posted so some info is repeated!


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## lenny

Clash said:


> My son developed antibodies to remicade and just started humira a week ago.
> 
> I'm not sure but I think The lead in time for cimzia is about the same as humira so about 8 to 10 weeks.
> 
> I've heard the cimzia shot is was less painful than the humira shot and the dosing schedule is, of course, different.
> 
> Good luck to you I hope cimzia works well for you!


Just how painful is the humira shot??
Asks someone who thinks the flu shot deserved a "yowch"..:shifty-t:


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## 24601

Lenny, I think it's different for everyone but I'd say significantly more painful than the flu shot and more painful than b12. It stings as it's going in and you have to hold the pen there after you've pressed the button and the pain increases. The pain level has increased for me as I've continued with Humira - rather than me getting used to it and finding it easier! When I first started I didn't find it too bad but now I find myself resisting on shot day. It doesn't bother me for too long though - just a bruised stinging feeling for a while so I just avoid anything touching or rubbing on the injection site. For me it's a passing thing but I do have to psyche myself up for it a bit. Definitely significantly more painful than injecting myself with anti-coagulant after surgery!


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## Lisat

Thanks for the good info, 24601 and my little penguin.  I'll consider it, but would like to keep a little real food for a while.  I know this may be the way to go, though


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## lenny

Lisat, my son's first GI said he could have 20% food and his new GI says 10% with his 8 Peptamens that he drinks every day.  So between 300 to 600 calories of food every day.


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## 24601

Lenny, are those percentages of food to formula for inducing remission? I'm really intrigued by this and wondering if it's based on any studies. Not saying it can't work just curious.


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## my little penguin

They are based on studies from chop on kids 
http://www.slideshare.net/mobile/joannayeh/enteral-nutrition-25724094

Here are the slides


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## Clash

I would agree with 24601, lenny the humira shot is way more painful than the flu shot or b12 for that matter. C said of medical procedures it was one of the more painful(but this was the first loading dose which is 4 shots). But he said it doesn't compare to his JSPA pain nor to his most severe CD flares.


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## 24601

Thanks my little penguin! That is so interesting to see! I first had Elemental 028 back in '97 and at 19 it was somewhat unusual. Definitely very interested to see newer research being done into partial enteral nutrition as it was always 100% of intake with a lot of discussion over whether it was okay to have anything but water and feeling like if you did you might well have ruined all that effort. The 'half elemental diet' for maintaining remission that they've published research on from Japan is interesting to me too - something I tried to do of my own accord years ago. I think that 10% normal food intake sounds like it could make this a much more appealing treatment option!


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## my little penguin

Section on EEN studies ( tons )

From the parents section
http://www.crohnsforum.com/showthread.php?t=43002

Plenty to read there


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## my little penguin

I agree Humira was compared to a wasp sting that you hold in

Our Rheumo has us add lidocaine to the Humira syringe which helps tremendously
Highly recommend talking to your doc about


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## lenny

If you're having vegetables, it's pretty amazing how many you can eat without spending too many calories.  My son has a large salad of greens most days and a couple of eggs.


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## 24601

Thanks my little penguin and lenny! As adults we definitely miss out on some of the EN information. Even though I don't do EN now for various complicated reasons I'm still really interested and like to be positive about EN for adult patients because we often don't get that positivity from our doctors. 

Can I just say that Crohn's parents are the best? I used to read the Dragonpack IBD forum (before it very sadly died) and that was completely awe-inspiring so I'm glad to see very active parent involvement here too. I feel like we all benefit so much from that because nothing compares to the energy and motivation that a parent has to find help for their child.


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