Remicade or Humira for 14 yr old

[WindingRs]

After almost a year of dealing with a non healing wound left after a perianal abscess/fistula, going through any available tests/scopes you may imagine with normal results, switching doctors... and no definitive answer, we are at a point ready to try biologics.

As for the the effectiveness of Humira vs Remicade in our case, the doc says both are equal. He is saying my son should pick the one he is more comfortable with.

My son says which ever one that is less risky (this breaks my heart - practically relying on us to help).

For those of you who have been in this road, can you please tell me anything that you may think is helpful.

Many thanks in advance.

 

[my little penguin]

So I can tell you what helped me as a parent eventually... I do stress eventually because I was physically ill to my stomach when Ds got his first remicade infusion at age 8
Dh was with him not me
Things that helped
Risk is relative
And Ds knows this
He had life threatening food allergies so eating anything ever is a risk
But he knows there are things he can control and not control to reduce risk
it’s about quality of life
Riding in a car under the age of 14
Risk of death is 1 in 250 for each car ride
Never had the guts to look at the risk for 14 and up assume it gets really bad
Swimming risk of death 1 in 1000
Swimming risk of death 1 in 1000
Even if the child knows how to swim

Risk of T cell lymphoma- this is the scary fatal one
The risk for the average person on the street without any meds or ibd is 6 in 10000
For this with ibd and taking a biologic plus 6-mp/imuran the risk rises to 4 in 10000

risk from taking infant Tylenol is death , liver failure and Steven Johnson syndrome - all horrid but the benefits are great

Ds is now 17
He has been on remicade
Humira and now Stelara

based on all the research papers I have seen (more than 5 years ago ) remicade did best with fistulas and abscess in crohns patient over humira

14 is the time of puberty and growth /weight gain
Remicade is dosed at mg /kg so as the kid grows gains weight , gets bigger etc the amount to get the same dose can be easily adjusted
And frequency changed
With home health infusions can be done on campus for college

humira only has one syringe size /dose -40 mg for adults (including 14 year olds -Ds started adult dose at age 9 )
Frequency can be increased from every 14 days to every 10, 7 or 5 but your really limited when puberty hits which is the hardest to control disease

it does have portable option so you can travel with it or have it shipped
No iv (vein scaring )
But you give it to the kiddo so your causing the pain versus a nurse
Remicade they coddle the kids
Day of movies /eating sleeping
Blood draws prior to the iv so no extra lab trips

In the end it really depends on your kids body
Remicade is a murine protein ( mouse based ) so Ds body hated it
Rashes all over , blisters occasionally and scaly scalp but those didn’t last long and he felt great
Unfortunately his body fought it and after 8 months he had a true allergic reaction (second time they pre doses with iv solumedrol)
So he was switch to humira (humanized version but still uses oyster or something weird -just more human )
He lasted on humira over 5 years
But still got rashes at injection site and sometimes large hives there but never a systemic reaction

Ds has severe allergies so he is not a good example
He has reacted to multiple drugs ( including remicade and kineret) ,food ,pollens ,animals etc...

he is on Stelara now and has been for 3 years

so basically pros
Remicade good proven record on fistulas /abscess
And easy to adjust for growing kids

humira only pro is a portable shot

 

[WindingRs]

Thanks so much MLP. Very much appreciate your support and tips. Its been very difficult to fight back tears lately.
Praying for all our kiddos to stay safe

 

[Jo-mom]

Remicade was a game changer for my son. He has been on it for 2 1/2 years with no apparent side effects/reactions. I was afraid as well but once you see the positive results, that goes away. Remicade works a little faster. My little penguin provided good details on both. Good luck. Things will get better.

 

[crohnsinct]

They really are both very very similar. Remicade edges out Humira with success rate especially with fistulas. Humira is way more convenient, especially thinking about college. But here's the thing....you have your best shot at remission with your first biologic that you try (biologic naive). Once you fail that biologic and move to the second your chance at success is automatically lower than the published success rate. So for my first biologic, I would choose the biologic with the best success rate. He won't go to college for another 4 years and by that time he could be still on Remicade or he might lose response. I would choose based on the here and now.

One of my daughters had Remicade for 7 years and has been on Humira and Entyvio for 2. My other daughter has been on Remicade 6 years. No increased infections or anything. Just nicely healed insides and a normal life. The only thing they both got was Remicade induced psoriasis. One has it mild the other has a terrible case of it but says it is a small price to pay to get to remission.

Infusions at college are not really bad at all. The drug gets shipped directly to the school med center (it has to stay cold so it can't sit in the mail room for days until they get around to it)or directly to dorm if there is a front desk person. Home health nurse comes to dorm and does the infusion. Home infusions were a game changer for us in terms of convenience because the kids don't have to take a whole day off from school to travel back and forth to the hospital infusion center and many home nurses will do evenings weekends etc.

Good Luck!

 

[WindingRs]

Thank you Jo-mom and crohnsinct.

 

[Maya142]

I would also go with Remicade honestly. As far as I know, it has the better track record with fistulas. My daughter has been on both. She liked the convenience of Humira. She did need to go to weekly shots and then eventually to every 6 days. As MLP said above, there is really one dose - 40 mg and while you can increase the frequency, you don't have the flexibility you have with Remicade. But you are less likely to have allergic reactions than with Remicade. If you do go with Humira, make sure it is citrate free - the old Humira with citrate/citric acid really burns when injected.

But she quite enjoyed the Remicade infusions - she got to miss school, watch TV or nap or read. If you go to a Children's Hospital, the nurses spoil the kids and they're great at putting in IVs. The advantages of Remicade are 1) that is dosed by mg/kg so as your son grows, his dose will go up proportionally. 2) It's usually one stick generally every 4-8 weeks (depending on what your child needs) and blood work is done right there - no extra poke for that. The disadvantages of Remicade are that 1) It's mouse protein so allergic reactions are more likely. BUT there are ways around that - adding a small dose of Methotrexate to prevent his body from building antibodies or making sure he always Remicade in his body (the doc can check Remicade levels and if you have antibodies - same with Humira, levels and antibodies can be checked). And not all kids have allergic reactions - my daughter was on Remicade 3 separate times and had no reactions and no side effects. And she was on an experimental high dose for her arthritis (which she has in addition to IBD) - 8 times the normal dose and she never had any issues with infections.

As she got older and went to college, she does prefer shots to infusions. But you have time and now home infusions are really common.

Of course, it is very individual - each kid responds differently. My daughter went from having ulcers in her colon and an inflamed, friable terminal ileum to having a beautiful colon (those were the doctor's words!) in 8 months (on Remicade) - ulcers all gone and the inflammation in her terminal ileum went down and was very mild.

Her IBD also did well on Humira though. Her arthritis was actually better on Humira than Remicade. So it is very individual.

I also agonized and agonized about biologics and then they turned out to be the best thing we ever did for my daughter. She has been on biologics for 11 years and they completely changed her quality of life. I only wish we had started them sooner - that is my biggest regret.

 

[WindingRs]

Thanks so much Maya...I needed some positive words. I am very happy for your daughter and I hope my son to respond well too.

 

[Ricky_V]

I would go with Remicade due to the fistulas

 

[Pilgrim]

My daughter has taken Humira since the age of 4. She is now 10 and on an 80mg weekly dose. So it is possible to move up dosage amount as well as frequency with Humira. She has done well for 6 years. No hospitalizations and a steady school life (as in she can do what the other kids do- normalcy.) We appreciate the convenience of having it shipped to our home and injection at home on our own schedule.
I usually buy her a treat or we do a movie as a reward. Same with her 12 year old brother who has been taking Humira for 2 years. No major side effects. She does seem to get more skin issues than her siblings. Her brother has had no side effects.
She was very sick before we started Humira. Although I don't think she has ever been in remission, she has never been as sick as she was before.

 

[kiny]

A weakness of Humira is that it is administered at home and it is poorly dosed as a result. Infliximab is accurately dosed at a hospital at 5 mg/kg, and patients are weighed. Weight of Crohn's disease patients can fluctuate widely, Humira does a very poor job taking that into account. Possible side effects of anti-TNF are also largely dose dependent, when someone becomes underweight, they simply get much too high of a dose on Humira, when they gain weight, they get a dose that is ineffective, this has been a common critique in studies. This type of medication should never be administered at home imo, dosing needs to be done by an IBD nurse and the patient needs to be weighed, you're not taking a cough syrup.

Infliximab is much older medication, a lot of care and studies had preceded correct dosing for crohn's disease patients. For a long time Infliximab was only given once. It was only after careful consideration that people were allowed to take it every 8 weeks.

Humira was allowed onto the market with very little care, where patient weight and dosing was neither properly studied, nor is patient weight given any thought. This should have never happened with medication that is very sensitive to dosing and where both side effects and effectiveness are largely dose dependent.

 

[WindingRs]

Thank So much Kiny! Very much appreciate your feedback. We selected Remicade, but have not started it yet. His GI wanted us to check the Hep B and Chicken Pox titers first. Titers came back both negative. Now we need to decide wether to redo the chicken pox vaccination and wait 6-8 weeks before starting treatment or start treatment and monitor him for exposure. Our pediatrician recommended to see an immunologist given that the son does not have any indication of Crohns through all tests and scopes we have run so far. Has no luminal manifestation of the disease either. Has two abscesses, and negative titers for both vaccines. We have to decide what’s next.

 

[Maya142]

We had to wait on biologics to redo the chicken pox vaccine. At the time, we were really hesitant to start biologics for my daughter (she had just been diagnosed), so were happy to wait (though now we wish we had started her on biologics earlier but we waited long after she had the vaccine, like a year - we were just afraid to put her on biologics. Now that is our biggest regret).

An immunologist is a good idea - some kids can have immune deficiencies that have similar symptoms to IBD. We saw one finally last year to check but my daughter did not have any immune deficiencies. But at the same time, I think there was another kiddo recently diagnosed on here with only perianal disease. You can also consider a second opinion at one of the big IBD centers - CHOP, Boston Children's, or Cincinnati children's.

In terms of vaccines, we ended up seeing an infectious disease specialist to get his recommendation. That also might be worth it.

 

[Maya142]

@Pilgrim - just out of curiosity, do you know if your GI has any other patients on the 80 mg weekly dose? We were told that 80 mg weekly was not given due to safety reasons but that was 6-7 years ago, so that may not be true any more.

Our maximum was 40 mg every 6 days. In the arthritis world, I've seen a couple of kids on 40 mg every 5 days, but no more than that - not 40 mg every 3.5 days or 80 mg weekly.

My daughter tried Humira a second time and it worked well but it wore off around day 3-4. So that's when we asked about 80 mg weekly but were told it was not an option. But I think it would have really helped her.

 

[Pilgrim]

@Maya142 I did ask if she was the only one on 80mg, and he said she is not. I don't know how many patients he has that are, or for how long. He is also a researcher....so sometimes I wonder if she's an experiment. Those dark thoughts creep in, lol. We are getting levels and fcal results pretty soon. I will let you know if there is progress. And what the levels are...they were high when she moved dose! Personally I think she's lost response.

 

[Maya142]

That does sound like she has lost response . I hope we're wrong though!
I wonder if they could make home infusions possible for her, given how far you are from a pediatric hospital. My daughter loves home infusions - she was just given Solumedrol for 5 days at home. Fingers crossed.

 

[Pilgrim]

No. We did talk about it as a possibility. First 3 infusions we drive every 2 weeks to hospital. (4 hrs each way). H is 100lbs now so he will allow our local hospital to do the infusions after that.

For the original poster: distance to infusion hospital was a big factor in our choosing Humira over Remicade initially. We are just so far away with very busy family life. Infusions can be really simple if you are near the hospital or home infusions are doable.

 

[kiny]

Since it hasn't been mentioned yet, a Mantoux skin test (rarely serum test) is usually done before anti-TNF treatment is started. They inject a tiny amount of tuberculin in the forearm and if there is no visible reaction seen on the skin the person can receive the treatment. There is a very minute chance that TB can reactivate in someone with latent TB after they have been given infliximab, it is extremely rare in the Western world unless the person travelled to South America, but better safe than sorry. (this test is done only once before treatment is initiated).

 

[kiny]

Our pediatrician recommended to see an immunologist given that the son does not have any indication of Crohns through all tests and scopes we have run so far. Has no luminal manifestation of the disease either.

Crohn's disease has been well-defined for over a decade. Dalziel in 1913 defined it accurately as inflammation involving the small intestine, inflammation that could not be explained by intestinal TB. (intestinal TB that can look a lot like crohn's, which is why biopsies are taken, to rule out intestinal TB).

When endoscopes allowed doctors to look at the lining of the intestine, this was confirmed, inflammation was largely ileal inflammation, with pockets of inflammation featuring granuloma and inflamed peyer's patches.

The age of onset is well-defined, the large large majority of crohn's disease cases are diagnosed around the ages of 14-22, when peyer's patches are most active.

Even though many doctors have taken the liberty to far more broadly define crohn's disease as involving clinical symptoms and age groups that do not match Dalziel's definition at all, it's important to raise more questions when doctors do this. Do these people actually have crohn's disease when the symptoms and age groups do not overlap with the large majority of cases, cases today and in the past.

Hypothetically speaking, when a 5-year-old child presents colonic inflammation, no ileal inflammation, negative serologic testing with ASCA and anti-OmpC, it is very hard to believe that child has crohn's disease, certainly not as described in literature. You can't just diagnose everyone who has unexplained intestinal inflammation as having crohn's disease, yet it happens all the time.

 

[WindingRs]

Thanks Maya for sharing your story. Any piece of information is helpful. We were very hesitant about biologics and still are. At the same time, I had convinced my self to start the treatment and get the surgery done this summer before schools open for fall. This chicken pox vaccine thing changed the entire plan. Even if we give him the first dose today, it will throw our summer surgery plan out the door.
Second opinion is a great idea. Although our doctor being the third or fourth one we are seeing, and one of the best IBD specialists in Southern California, we called the Seattle hospital, and they said the first appointment should be in person, which was not feasible for us.
As for the other kiddo with the perianal disease, was it Crohns or something else?

 

[WindingRs]

@kiny, yes we did the TB test. That one is negative.

 

[WindingRs]

Crohn's disease has been well-defined for over a decade. Dalziel in 1913 defined it accurately as inflammation involving the small intestine, inflammation ....You can't just diagnose everyone who has unexplained intestinal inflammation as having crohn's disease, yet it happens all the time.

Unfortunately, that’s where we found ourselves. No inflammation anywhere, biopsies are all normal, normal blood and stool tests, but a slow healing wound left after a horseshoe abscess/fistula with no other explanation. Our doctors believe this kind of complex fistula will not happen at age 14.

 

[Maya142]

Hypothetically speaking, when a 5-year-old child presents colonic inflammation, no ileal inflammation, negative serologic testing with ASCA and anti-OmpC, it is very hard to believe that child has crohn's disease, certainly not as described in literature. You can't just diagnose everyone who has unexplained intestinal inflammation as having crohn's disease, yet it happens all the time.

Colonic Crohn's disease exists though - that or UC would be the diagnosis in the situation you describe. In the US, those antibodies are not routinely tested - ASCA and anti-OmpC. And in terms of age, there is VEO IBD - Very Early Onset IBD which I think is kids who are diagnosed before age 5... or perhaps age 7. I'll tag @my little penguin - what is the age for VEO IBD? I do know that for that age group immunological testing is done to make sure the child does not have an immunodeficiency.

 

[Maya142]

Thanks Maya for sharing your story. Any piece of information is helpful. We were very hesitant about biologics and still are. At the same time, I had convinced my self to start the treatment and get the surgery done this summer before schools open for fall. This chicken pox vaccine thing changed the entire plan. Even if we give him the first dose today, it will throw our summer surgery plan out the door.
Second opinion is a great idea. Although our doctor being the third or fourth one we are seeing, and one of the best IBD specialists in Southern California, we called the Seattle hospital, and they said the first appointment should be in person, which was not feasible for us.
As for the other kiddo with the perianal disease, was it Crohns or something else?

It was Crohn's I believe. What about seeing someone in northern CA? Stanford has some good pediatric GIs. I'll tag @crohnsinct - she may have other recommendations in CA. I do think an in-person visit is a good idea though, especially considering your kiddo has perianal disease and disease nowhere else. That way they can examine him and even schedule imaging to get a better look at his fistula/abscess.

In terms of the chicken pox vaccine, I was glad we got the booster, but in retrospect, I think it was important to start biologics early and as soon as possible. But it is a personal decision and something you should discuss with your GI.

 

[crohnsinct]

Hey there! I got the tag. If you want you can P.M. me. I am very curious to know who your doc is. Of course the world renown researcher and the man of IBD is down there in San Diego but he is an adult doc and I am not sure he see's kids but given how unique your son's case is maybe? My daughter's are seen at Stanford and I could give you the name of two excellent docs there but also UCSF has a well known center and researchers.

 

[my little penguin]

Unfortunately literature hasn’t caught up with kids
Children’s hospital of Philadelphia (chop) and Stanford (I think ) has one of the few very early onset inflammatory bowel disease clinics in the United States
At these places they can study the small percentage of children that in fact do have Crohn’s disease from a very young age (under age 8 for chop ) to determine
Why they get the disease so young
Genetics
Immunology
What meds /treatments work and why
What testing works best for this group
What is the same and different
Since less than 2% of all pediatric crohns patients are dx under the age of 10 and even smaller number under age 8

Ds was dx at age 7
Terminal ileum inflammation as well as inflammation/granulomas in other parts of the intestine
Multiple second opinions
All the same crohns PLUS (plus other stuff ) -not Typical crohns
It’s been 10 years and still crohns
Biologics made a world of difference for him

 

[crohnsdad109]

new member here. hi @WindingRs we are in SoCal too, we've been looking for a 2nd opinion but don't know who, so we picked one more or less at random, a pediatric GI about a half hour away, appointment a month from now. Would you mind if i PM'd you for the doctor you're seeing? just trying to figure out what's what and who's who when it comes to GIs in the area. My teenage son's been on Humira for four years, currently having a bit of a flare and not feeling too hot, losing weight.