Antibodies to Humira now :(

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ashly825

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Most of you probably remember that I posted a while back about my daughter(13) having the genital Crohn's. While this still applies we have pin pointed why this is flaring up again. Like the post title says, she has developed antibodies to the Humira.


So from 4/15-12/15 she was on Imuran, it never managed her Crohn's so she was switched to Remicade from 12/15-7/16(worked WONDERFULLY and put her into remission) then she developed an antibody to the Remicade. At that time she was switched to Humira and started it in August 2016. Now she's developed antibodies to that. :(


He changed her from once every 2 weeks to once a week and did antibody tests last Wednesday(I won't know the results till probably the end of this week or possibly the beginning of next week)to see if he can keep it at therapeutic levels for a while without having to switch her right away. As her mother and full time caregiver I can tell you that the meds are out of her system already. All of the signs are there and she is doing the exact same thing that she did with the Remicade. When she builds an antibody it works overtime and the meds are gone in a few days.


I've spoken with them about using meds with the biologics to keep her from developing antibodies but the doctor said that the risks outweigh the benefits of that. From what I can tell we are now out of pediatric options and he has suggested Entyvio or Stelara. We are leaning more towards the Entyvio as my daughter is sick of the shots. Does anyone else have experience with this medicine?

We are all fixing to do the Paleo diet as I have read excellent things about it and Crohn's disease. I hope that it will help. My oldest daughter(14) also has severe stomach issues but all scopes keep coming back clear though her crp was 45(can IBS even cause a high crp?)and she had non-visible bleeding when he ran a sample from her stool. He has diagnosed her with IBS and I'm having a hard time believing that because she doesn't have the classic symptoms of IBS. No diarrhea or constipation and everything she puts in her mouth causes her stomach to hurt(she only likes junk though so that's why I'm trying the Paleo diet)not just one day she can eat it and the next she can't like with IBS. Did I mention that she is only 5' even and only 81 lbs? She was up to 87 at one point but keeps losing.


Don't get me wrong, they have a GREAT doctor, I guess as a mother though I am just super worried. I have done a ton of research and due to that my Crohnie is on Flagyl indefinitely for the genital Crohn's so he listens to my concerns.


Anyhoo, if you've made it this far, thank you!
 
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I think at this point, it might be worth getting a second opinion. I do understand that there are risks to adding a second medication to prevent antibodies but your kiddo is just going through medications too fast. There are a very limited number of biologics available.

Has your GI considered adding something like Methotrexate to prevent antibodies? It does not carry the same cancer risks as Imuran/6MP which I assume are the risks your GI is worried about. Now more and more doctors are using MTX instead, since it is safer. You will find that MANY, if not most of the kids on here are on combination therapy to prevent antibody formation.

I understand how scary it is - we were terrified when we put my daughters on MTX. But honestly, it wasn't so bad. It can be given orally or as an injection. The injection is not like Humira - it does not burn and is basically painless. Some kids do have side effects like nausea with it, but many do not and those who do can often be treated with Zofran.

This is a good presentation that discusses the risks/benefits of various IBD meds:http://programs.rmei.com/CCFA139VL/

I think the thing to remember is that though there are risks with the meds, those are very rare and there are much bigger risks that come with untreated Crohn's which are not so rare (abscesses, fistulae, strictures, sepsis, perforations etc.)

Entyvio and Stelara are good options, but I would first try adding MTX and seeing if that helps. Adding MTX can increase her trough levels of Humira - the amount of Humira in her blood. So you may not even have to switch.

I would just be very wary of going through options so quickly.

I would also get a second opinion for your older daughter - IBS does NOT cause a high CRP and bleeding. The weight loss is also concerning.

I'm going to tag some other parents so you can hear from them:
my little penguin, Clash, crohnsinct, Pilgrim, pdx, Farmwife

Good luck!!
 
Hi there. I agree with Maya about trying methotrexate with the Humira to see if you can get a little more time with it. There are a couple of kids on this forum who developed low levels of antibodies to Remicade, but after increasing the dose and adding methotrexate, they were able to reduce their antibody levels.

I also agree that it sounds like your older daughter has more going on than IBS. Has she had a fecal calprotectin test or an MRE? Scopes are important, but they can't see inflammation in the small intestine.

Hope that you're able to find a treatment that works for your younger daughter, and that you can figure out what's going on with your older.
 
Ds has been on combo of humira plus mtx for almost 5 years
No issues
He reacted to remicade after 8 months
Fwiw his GI and rheumo will not put him on imuran or 6-mo plus humira
Both said it was too risky

Good luck


Agree
Try to get a second opinion for your older child
 
Thanks everyone. I will say this, when she creates an antibody it makes quick work of the meds. I guess that's why he is discussing the switch. I will definitely run that by him though(adding MTX to Humira).


He told me earlier that since Entyvio is specifically for Crohn's he didn't want to add anything to it. He did however say that if she created an antibody to that and had to be switched to something like Cimzia that he would be adding MTX at that point. He said that Emily was a special case in that most patients don't create antibodies like she does. Sounds like my luck.


I know when she created an antibody to Remicade she had her injection on 7/20 and by 7/27 her body was rid of it. Once they create an antibody is there a way to put them on MTX to make it work again(like the Remicade)?(don't laugh at me, I have researched out the wazoo and have came up mostly empty handed in the way of antibodies)


As for my oldest daughter, he had no problem doing an MRE just after Christmas and he said it was clear. It's so frustrating! She has literally had stomach issues since she popped out.


She had colic and severe GERD. I'll say that she can't look at anything with dairy in it (though it was said several years back that she was not lactose intolerant), anything sweet about kills her. When she first gets up in the morning(if it's early) if I don't give her a Dicyclomine and a Zofran she will be severely sick and can barely stand up. There are times when I'll be doing her hair or when I would help her brush under her braces that she would have to sit down(just from standing) because she would get hot and feel like she was gonna puke. Some of the times she would have to lay in the floor(we have ceramic tile floors) to feel better. Just recently she has developed what appears to be a trigger to certain types of potatoes(she can eat them one place but not anywhere else). She does not have diarrhea or constipation. Only severe stomach aches,nausea and occasionally vomiting.


To me IBS is a freaking blanket disorder (much like my Fibromyalgia dx until they figured out that I have Psoriatic Arthritis, an AI disease), but she has been tested for Celiac, Crohn's and Lactose Intolerance and they were all negative. I believe he also ran an ANA test(it was when it was thought that she had Crohn's but she does have pain in her finger joints).
 
Cellcept is another alternative immunosuppressant that can be used in combination therapy with a biologic.
 
I'm so sorry that she has to go through all this.
My Grace has been on many different combination of drugs like,
Humira and Methotrexate,
Humira and sulfasalazine,
Remicade, Methotrexate and sulfasalazine and
now finally she is on Remicade and imuran.

Doctors are so different.
Grace's doctor would never put her on a solo treatment. He felt a combo is best in her case because she hopefully it would help her stop building antibodies.

Has her doctor looked into the diagnosis of gastroparesis?
Maya142 has a daughter with this condition also.
Maya does any of the symptoms seem familiar?
Remember we're just mom's not doctors. Hugs
 
I was thinking about gastroparesis for your older daughter too. My daughter has similar pain after eating or drinking anything, but no nausea or omiting. Her scopes barely showed anything at diagnosis, but her pill cam showed ulcerations throughout. I think the elevated crp is significant. Fecal calprotectant can show whether she has inflammation in the bowels.
 
Gastroparesis might be something to consider. Typically, symptoms are nausea and fullness after eating - sometimes after eating just a few bites. Some kids vomit after meals, others don't. Some have bad abdominal pain after meals, others do not. Weight loss is also common.

My daughter had extreme nausea after meals, occasional vomiting, stomach pain and lost a LOT of weight.

A gastric emptying test is used to diagnose Gastroparesis. It's a fairly simple test - your kiddo will eat a small meal and images of her stomach will be taken at intervals to see how long the food takes to empty out of her stomach. If more than 10% of the meal is left after 4 hours, then that is Gastroparesis.

It's definitely worth asking about. Good luck!
 
I have talked to the doctor. Em starts Entyvio on 1/20 as the levels of Humira are not enough since forming the antibodies. In November her CRP was 5.1, Sed rate was 11, December CRP 5.7 Sed rate 13, the beginning of January CRP was almost 10 and Sed rate is 36. It upsets me so much that just back in June scopes and blood work showed she was in remission and now she can barely eat again. :(


I talked to him about Tory and he said that gastroparesis was a strong possibility so he has ordered the tests for her. Do any of you have experience with this and the treatment? He has done everything but the pill cam for her. Her endoscopy revealed gastritis from acid reflux and a hiatal hernia. Her colonoscopy revealed microscopic Colitis that was neither UC or Crohn's(both were done 1/2016). Her MRE was normal (12/2016).


I asked him flat out why her inflammation points were up and there was microscopic blood on the fecal test when neither are symptoms of IBS. He said that some teens have a form of IBS that causes inflammation and microscopic colitis, hence the high numbers and Colitis. It still doesn't sound right to me. He said if it wasn't gastroparesis then he would put her on Pentasa(her sister also takes this for her Crohn's)and that usually helps with the inflammation.


I just don't know what to think anymore. :/
 
My younger daughter has Gastroparesis. It does not cause an elevated CRP or bleeding - so while it may be responsible for your daughter's nausea/stomach pain, something else is causing the elevated CRP and bleeding.

Is your GI planning to treat the microscopic colitis? Have you considered a second opinion?

For Gastroparesis, several things might help. Motility medications like Erythromycin or Reglan are often used. Most doctors start with Erythromycin and it is given before meals. Some kids also need nausea medications - my daughter takes Zofran as needed.

Modifying your daughter's diet will also probably help. Eating small meals many times a day works better than 3 regular meals. My daughter eats 4 or 5 very small meals.

Foods that are high fat and high fiber take longer to digest and make symptoms worse, so my daughter does not eat them. We make sure veggies are very well cooked - nothing raw. Some kids' stomachs are able to empty liquids properly, so they do well with things like soups and smoothies.

Some kids are unable to eat/drink enough to maintain their weight. In those cases, a feeding tube is usually used. My daughter has a J tube and gets about half her calories through it. It goes into her jejunum, so bypasses her stomach entirely. Her stomach cannot handle a lot of liquids either, so drinking formula and using an NG/G tube did not work for her.

She also takes a PPI for reflux. Reflux is very common with Gastroparesis.

For your younger daughter - is the GI going to add something so that she does not make antibodies to Entyvio? I understand the switch to Entyvio, but unless something like 6MP or MTX is added, it sounds like she will make antibodies again and there really are not very many drugs left. I would definitely get a second opinion for her.
 
Definitely a second opinion
Pathology between two hospitals can be different on biopsy slides
You can get a record review including slides and images from the big three pediatric GI hospitals without traveling
Boston children's
Children's of Philadelphia
Cinnicinati children's


Ds has gastroparesis
He takes erythromycin prior to meals
And drinks neocate jr (orally no tube) daily to make up his extra calories needed
 
The inflammation points for my oldest was last January and when the scopes came back relatively clear they didn't do anything to treat the microscopic colitis or the high numbers. Just said it was IBS and gave her Dicyclomine. He also wrote a script for a low dose antidepressant which I never had filled because I'm not going there. He said that was optional anyway but that it worked in some with IBS. It's been a year and they haven't done anymore bloodwork. Everything that has been done for her has been at my urging.

As for my youngest I have been researching Entyvio and it doesn't seem to have good reviews. He said since that was made specifically for IBD he wouldn't couple it with MTX but if she had to move to Cimzia that he would be putting her on MTX at that time.

I have considered taking them to Texas Children's Hospital in Houston since I'm on the Gulf Coast. They have an IBD board there and seem to be very knowledgeable. I really like their doctor and he's always communicated well with me but I am afraid as the options are running out for my youngest and we can't seem to find the problem with my oldest.
 
So Em starts her Entyvio Friday. I'm a little afraid as I've read it's very slow acting and her numbers are doubling and tripling.


Tory has her stomach emptying test next Wednesday. I've kind of wondered if she didn't have thyroid problems also so I'm gonna run that by the doctor.


Anyway, I will keep you guys posted.
 
Kids can make antibodies to Entyvio, as far as I know. Even though it is made specifically for IBD, it is often used with 6MP or MTX.

It is very slow acting - most kids have to be on steroids till it kicks in. My daughter is starting Entyvio soon and is currently on Entocort - however, if that is not strong enough we will put her on Prednisone.

People typically say that it takes 6 months to really work.

I would definitely pursue a second opinion - a second set of eyes doesn't hurt and your younger daughter has a rare presentation of Crohn's and is going through meds very quickly.

Good luck with the gastric emptying test - it's a fairly easy test, just long and boring. My daughter got to watch movies during it so that helped.
 
Wanted to point out second opinion does not mean you need to change docs or that you don't like or trust your current docs
Most eeelcone second set of fresh eyes especially on tricky cases
We have had more than one second opinion.
 
I haven't been part of this conversation but I would also encourage a second opinion. It can't hurt... and, as Maya said, given that your daughter is moving through the meds so quickly, it might hurt to not have a second set of eyes on her! :ghug:
 
Aim To investigate the comparative efficacy of currently available inflammatory bowel disease (IBD) therapies to reduce hospitalisation and surgery.

Methods We conducted a systematic review in MEDLINE/PubMed for randomised controlled trials (RCT) published between January 1980 and May 2016 examining efficacy of biological or immunomodulator therapy in IBD. We performed direct comparisons of pooled proportions of hospitalisation and surgery. Pair-wise comparisons using a random-effects Bayesian network meta-analysis were performed to assess comparative efficacy of different treatments.

Results We identified seven randomised controlled trials (5 CD; 2 UC) comparing three biologics and one immunomodulator with placebo. In CD, anti-TNF biologics significantly reduced hospitalisation [Odds ratio (OR) 0.46, 95% confidence interval (CI) 0.36–0.60] and surgery (OR 0.23, 95% CI 0.13–0.42) compared to placebo. No statistically significant reduction was noted with azathioprine or vedolizumab. Azathioprine was inferior to both infliximab and adalimumab in preventing CD-related hospitalisation (>97.5% probability). Anti-TNF biologics significantly reduced hospitalisation (OR 0.48, 95% CI 0.29–0.80) and surgery (OR 0.67, 95% CI 0.46–0.97) in UC. There were no statistically significant differences in the pair-wise comparisons between active treatments.

Conclusions In CD and UC, anti-TNF biologics are efficacious in reducing the odds of hospitalisation by half and surgery by 33–77%. Azathioprine and vedolizumab were not associated with a similar improvement, but robust conclusions may be limited due to paucity of RCTs.
Click to expand...


From
http://www.medscape.com/viewarticle/873616?src=wnl_edit_tpal&uac=185734DZ



Comparative Efficacy of Immunosuppressants and Biologics for Reducing Hospitalization and Surgery in Crohn's Disease and Ulcerative Colitis
E. J. Mao; G. S. Hazlewood; G. G. Kaplan; L. Peyrin-Biroulet; A. N. Ananthakrishnan | Disclosures
Aliment Pharmacol Ther. 2017;45(1):3-13.

 
Thank you all. I am going to call her GI shortly and talk with him about adding something. From what I've been hearing Entyvio is not that great for people with CD. I'm really discouraged at this point. :(
 
So frustrated! After they made my oldest daughter's appointment for next Wednesday they called to tell me it's too late in the morning. It has to be done really early so there will be eggs in the cafeteria. OK 1. My daughter can't get up really early because for some reason it makes her stomach issues worse 2. She sure can't eat that early 3. We live more than an hour away from the hospital so it would be even earlier for us 4. She doesn't eat eggs! She has NEVER liked eggs(to the point she dry heaves). I told the lady about all the conflicts and she says "you're gonna have to contact the GI because all we use is eggs." Really? So they've never had a kid that was allergic to eggs? Uugghh
 
I have heard of the test being done with oatmeal -- but typically, they use eggs and toast (or bread). I would talk to her GI and see what your options are.

They even do the test for babies who are too young to eats eggs so there has got to be another option.

If the test needs to be done in the morning, could you ask her GI to give her something for nausea? My daughter had to take Zofran when she did the test - there is no way she can otherwise eat that amount and keep it down. They have to eat the meal in 15 minutes or so.

I completely understand how difficult it is - my daughter has all the same problems - but the sooner you get the test done, the sooner you'll have answers.
 
Thank you Maya. I am awaiting the GI's call so that I can ask him about it and also about combining treatment for Emily with her Entyvio.


My thing is if she does have an alternative to eggs such as toast or bread then why does it have to be done so early? I can give her a Dicyclomine and Zofran but it will still make her stomach hurt extremely bad.
 
If you want valid test results then eggs it is
They use eggs since those are the easier on the stomach from an emptying standpoint
Everything is measured and all the times across hospitals are based on studies including eggs
I get your Dd doesn't like eggs but it's one meal to try and figure out why she feels horrid and get her better
Ds also feels horrid in the am and has over an hour drive in
All of these factors :stink: but getting a diagnosis means the early morning etc for one day

Yes they have had kids do the test who are truly allergic to eggs and use something else which is very different from just not wanting to eat them . For them it's not a choice
And then the results are questionable

Babies they use formula so it's only a liquid emptying study

The rest of the kids eat the horrible eggs since that is easier to mix the radioactive tracer in .

Oatmeal does not have the same emptying rate and most even without Gp have a hard time with it

Ds has multiple ltfa (not eggs ) as well food intolerances to wheat and milk but still had to eat the bad eggs

I completely understand it will be hard for your dd but ...
Getting a valid test could improve her QOL

It comes down to how important are answers
Is being miserable for one morning worth it ?

For ds it was life changing so despite thinking he would vomit and being miserable before and during and after the test
We got valid results
And Ds was treated -feeling better with meds and formula
 
You can use toast or bread
That is part of the meal
Toast jelly and eggs
They need to mix the tracer in something semi liquid
Otherwise they can't see the food in the stomach on the scans
 
Here lies the problem, she has behavioral issues and if she doesn't want to eat something she's just not going to eat it. At 14 years old there's not much you can do to make her. I know this sounds insane and she has always had discipline in her life but she has ODD and is just completely hard-headed.
 
Does she see a therapist?
Sometimes they can help you and her come up with a plan that she will agree to
So it's not mom said thing
ODD is tough but treatable
At 14 she needs to understand what the test is for and why
Not how it can be changed
Mental and medical health can be tricky at onset
 
I have heard of the test being done with oatmeal - though now that I think of it, oatmeal does have a lot of fiber and I'm not sure that would be an accurate test?! The hospital that did it with oatmeal was an adult hospital though, so maybe it's different protocol or something.

My daughter did not think the eggs were terrible - yeah, they were bad eggs, but they were edible. They did offer jelly to put on the toast/bread, but she didn't want that. She was able to eat all that she had to (I think all the eggs and 1 slice of bread) within the 15 minutes.

It is just one bad day. I know it's tough that - it's especially hard with picky kids. Do you think bribery would work? Offering her a reward for eating the eggs?

The test will probably make her stomach hurt - but if you get answers and then a treatment plan, she will get much better in the future.

Getting the Gastroparesis diagnosis made a BIG difference to my daughter's quality of life. With motility meds, she does not vomit with meals or even have extreme nausea, most of the time. She is not in pain after she eats every time and she has gained back all the weight she lost.

It is very worth it and besides eating the eggs - it's quite an easy test. I'd ask them if she will have access to a TV or something to watch movies (my daughter did), otherwise I'd take a book or ipad or something to entertain her since it's long.

Have her wear comfy clothes and take a change of clothes in case she throws up.

Good luck!
 
It also might be worth asking for Child Life to come during the test - they can distract her and help her cope with the procedure.
 
Thanks ya'll for the ideas. She doesn't really care who tells her to do it and she isn't easily bribed. It's so frustrating. I'm at my wits end with it all. I am still waiting on GI to call. I am quickly seeing that we are going to have to get a second opinion on our Crohnie because as of the other day he is not wanting to add MTX unless she creates antibodies to the Entyvio. He has in the past told us that it carries too many risks. When I bring up that she is going through meds too quickly he says that they are approving new things all the time but I just don't think that is so.
 
But does she see a therapist for the ODD on a regular basis weekly or every other week to help her cope with her ODD ?
Otherwise things tend to get worse as kids age in terms of mental health
 
She hasn't been formally diagnosed with ODD. Just shows symptoms. I've talked to her and explained that she might not have a choice as far as the eggs go.
 
Getting a good psychologist who deals with medically complicated kids really helps them and you cope as a family
And may get her the dx she needs to move forward
The older they get the harder it is to make changes for the better

Good luck
 
Ok I have one for ya'll. We get to the hospital for Em's infusion this morning and there's no medicine(Entyvio). The nurse thought that the hospital had it and the hospital thought that the nurse knew it would have to be specially ordered. So now we have to wait until next week for her infusion. She is now on steroids to help with her inflammation.


I also learned during all of this that A. Em is only the second child to be given Entyvio at our Children's Hospital and B. That our GIs don't use MTX with their treatments. Sooooo, I guess it is official that there is a second opinion in our future.


While talking with one of the nurses she asked if her GI had discussed surgery with me and I'm like "no and I don't want to! At least not yet!"
 
Thank you CarolinAlaska.


So we still don't have the injection set up yet but they think it will be by Friday. Em is now on steroids(yippee...) and we are awaiting the date. The doctor said he feels that with Emily in only a mild flare that the Entyvio will work quicker on her and even more so since she's on steroids.


He is checking on an alternative to eggs for Tory's test on Wednesday and said that it shouldn't be a problem to find something else (he is thinking oatmeal). I will update after I know more.
 

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