Remicade vs humira vs 6MP, med change...help

[Momof3boys]

My son is currently on methetrexate, Entocort, folic acid, Prevacid, and multivitamin. He is 7, diagnosed in January 2015 with Crohn's with inflammation in the small intestines primarily. We suspected the treatment regimen wasn't working and we were correct. His Cal Protectin is still elevated. I was told to research Remicade, Humira, and 6 MP. I am doing this but wanted a parents prospective as well. Is your child on any of these and thoughts?? Side effects/benefits. It sounds like we will have input on what to try next. Currently I am leaning toward remicade. Thanks in advance!! One other thing about my son, he has aspbergers, high functioning autism.

 

[crohnsinct]

Hi there...I am sorry the mtx alone isn't working. My older daughter is on Remicade and mtx. Remicade has worked beautifully for her for 3 years. The only extremely rare side effect she got was Remicade induced psoriasis and that brought with it psoriatic arthritis. Stopping Remicade can possibly clear both things but we don't dare because it works so well for her CD. She has not had any ill effects from the immune suppression either. Rather she is the healthiest one in the house.

One added benefit of Remicade is that the blood tests are typically pulled at the same time as infusion. This limits the number of pricks and trips to the office etc. For us the other added benefit is compliance. No chance to forget as they make us make our next appointment before we leave the current.

Remicade is also a very flexible drug with regard to dosing as the kids grow or disease activity changes. You can change the mg/kg and the scheduling to accommodate growth and disease activity changes. I do not think Humira is as flexible. But Humira is convenient in that the shot is given at home. YOu will hear around here that the shot does hurt quite a bit. I will let others expand more on Humira.

My younger daughter dx'd at the same time as your son is on very similar treatment. Mtx and EEN (instead of Entocort). If Mtx fails her we are planning to move to Remicade.

Good luck with your decisions.

 

[SupportiveMom]

Humira's dosage doesn't change in amounts as the drug is not administered by weight. It is adjusted by giving the dosages every 8 weeks, 4 weeks, or 2 weeks after the initial loading dosages. crohnsinct is right, it does sting a bit. There are tricks to help reduce that, but not by as much as the kids would like in my experience.

Blood work isn't needed to be drawn as much with Humira as it is with Remicade, but when you do need it you have to go to the blood work clinic. Meds are shipped right to you in some cases, most go to the pharmacy for pick up. It needs to be refrigerated, but other than that you can travel with the med and not worry about scheduling infusion appointments.

We didn't have a choice on which drug to try for biologics because we needed something to work fast and Humira can take a few weeks or months to kick in. No matter which biologic you try, I would recomend using combonation medication therapy to help prevent antibodies from being formed, either Methotrexate or Imuran are the typical ones. When an adjustment of meds happened, it normally was on the immunosupressives.

If you like the ease of doing the needles at home and not being tied to more appointments I would actually recommend Simponi. It is so easy the kids can inject themselves (after a nurse teaches them). My daughter started doing them herself, and is the 1st drug I could see her being responsible enough to continue with and it causes her no pain injecting herself. It comes in a pen form. Not many kids are on it yet. It is still fairly new. I would suggest speaking to the doctor about the possibility.

 

[my little penguin]

DS has been on three .
He was dx at age 7 as well.
Highly recommend remicade - for DS it was the easiest.
6-mp wasn't enough for DS - neither was Mtx btw
6-mp went to his liver and really didn't stop his symptoms
He then tried Mtx to avoid the big guns aka biologics
With that he couldn't get off pred without getting vasculitis
With remicade it took three loading doses plus a week of two and he was back to normal
DS has skin issues which remicade and Humira has made worse .
DS is also extremely allergic to everything and I mean everything .
He had an allergic reaction -mild -after 8 infusions .
He then switched to Humira in April 2013.
It burns a lot - DS screams
I get the joy of injecting him every 10 days.
As he gains weight and grows he is getting less and less of drug for his weight.
Remicade can be adjusted so your kiddo gets the same amount even when they gain weight .
Humira took 4-5 months to work as well.
That said it has worked well.

 

[Maya142]

We have done all three too. My daughter did best on combinations - Remicade + MTX worked well for her and so did Humira + MTX. She liked Remicade best because it was not very frequent (every 4 weeks for her but generally most doctors start with every 8 weeks) and was just an IV. She actually liked the infusions - liked the chance to relax, miss school and watch TV! Remicade took 3-4 infusions to work for her. No side effects at all, except some tiredness the day after the infusion.

Humira, on the other hand, was a very painful shot which she had to given weekly (but generally you start out giving it every 2 weeks). The shot really burns. She hated it but dealt with it but she was much older than your son (a teenager). It took a long time to work for her, but when it did, it was like magic. M had NO side effects with Humira.

We have only done Imuran (which is just like 6MP) in combination (with Remicade and now Simponi). No real side effects except nausea when we were increasing the dose.

My daughter is currently on Simponi and Imuran. Simponi is a relatively new biologic like SupportiveMom mentioned. It isn't approved for pediatric use yet and is only approved for Ulcerative Colitis in adults so far. It is a pretty painless shot - much better than Humira - but I really doubt a pediatric GI would prescribe it if your son has not tried the FDA approved treatments for pediatric Crohn's. The only reason my daughter is on it now is that she's been on everything else already (and she's 18, so her GI/rheumatologist don't mind prescribing it to her).

Med choices are so hard -- good luck!

 

[Momof3boys]

Thank you everyone!! This really helps.

 

[Sascot]

My son has done well on mercaptopurine, but it does take up to 3 months to start working. Personally I would choose Remicade over Humira purely because the Humira seems to hurt a lot

 

[Chester31]

My son is 16 and recently had to make the choice between Remicade and Humira. He chose Humira as it can be done at home and means that he doesn't have to have a cannula and spend hours in the hospital. He has completed his two loading doses and is due to have his first maintenance dose later today. He is doing the injections himself and although he says it hurts more than a regular injection, he says it's really not that bad and it's over in a matter of seconds. His homecare nurse said that men describe the feeling as a 'burning' sensation while women say it's a 'tingle'!! It's hard to know whether it's having an effect as his only real symptom is poor appetite and inability to gain weight. He has taken more of an interest in food in the past month but we'll have to see what happens over the next couple of months. He is currently also taking 6mp although is hoping to come off this once the Humira kicks in as his lymphocyte count has dropped a little too low.

 

[Worried mama]

Our dr gave us choice between remicade and humira but he thought remicade would work better for us so we went with that. My son has only had his three loading doses so far so not sure how well it's working yet, blood still shows inflamation and he had a toilet full of blood yesterday....so I don't know. I hope it works soon. No side effects this far.

 

[Pilgrim]

We chose Humira for our daughter because the hospital for administration of Remicade is many hours drive from our home.

Yes, it does sting. But it is over in 10 seconds, and once every 2 weeks. It has worked for her by dropping her fecal calprotectin levels from 1800+ to about 250 in less than 3 months. At this point we are using no other drugs. She can do everything her siblings do now, whereas a year ago she could only sit and watch everyone else play.

We tried AZA (Imuran) but she had a allergic reaction to the med. Truthfully, I feel better about the safety profile of biologics over Imuran or 6-MP anyway. I don't know if other parents feel the same way.

Hope that whatever you choose works well and quickly. It's such a gift when they start to feel better.

 

[crohnsinct]

I feel the same Pilgrim...about biologics over mtx and Imuran!

 

[CarolinAlaska]

I don't know which we would choose between Remicade and Humira. I think soon we'll have to make that choice. We also may have to drive far for the infusion.

 

[ChicagoMom]

My daughter was diagnosed just about a year ago and went straight on Pentasa and 6-MP. They worked ok for awhile, but within a few months the 6-MP caused bone marrow suppression and September was a rough month getting things back on track as far as blood counts go, etc. I knew I did not want to try adjusting the 6-MP dosage, it wasn't a risk I was willing to take, so we moved on to Remicade and it was the best decision we could've made. My daughter also takes methotrexate and has had no adverse side effects to either med. She has been on Remicade and Methotrexate since October and is doing phenomenally well. She feels great, her bloodwork looks good, and she's grown nearly 2 inches since she started it. I was scared of these meds, but they've changed everything for the better, so that makes it an easier decision to live with. Good luck! These are tough decisions to make.

 

[Momof3boys]

So thanks to everyone!! We are starting remicade as soon as insurance approves. I sure hope it helps him as everyone is indicating it helped their kid. Eosinophil esophagitis is now genetically confirmed too so I will continue on a pretty restrictive diet. And lastly the autism. Sincerely hoping this kid gets a break now. He has plenty on his plate as a 7 year old. Thanks again!