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Crohn's Disease Forum » Parents of Kids with IBD » Child going from Remicade to Humira


09-04-2014, 12:22 PM   #1
cre
 
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Child going from Remicade to Humira

We just moved to a different state and had to switch to a new specialist, we like him just as we did our first and only specialist, though he believes it would be better to switch our 3 year old over to Humira from Remicade. Our son has been on Remicade since he was diagnosed with Crohn's at age 2. The new doctor said he would not have considered the change but that since the Remicade just recently wore off a week early between infusions he said it couldn't hurt to try, and he is also a believer in the success of Humira. Have any parents out there switched medications like this on their young child, and if so were you happy with the results? Thank you all for your time and thoughts.
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~Crohn's
~Son Dx March, 2014 @
2 years 10 months old
~currently on Humira, Imuran, Allopurinol, Lansoprazole, Zinc
~previously on Remicade infusions every 8 weeks
09-04-2014, 12:48 PM   #2
my little penguin
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I would check with another opinon first.
Remicade is to be used until it stops working or you react to it.
It is to be used for life.
DS had two allergic rxns to remicade which is why we switched.
Humira works for my kiddo but it hurts( burns very badly )
No way I would switch just to "try it"
Add in if you have more than 8 weeks between remicade infusions
There are really good odds the kiddo will have a reaction at the next infusions so you would be out of options .

Hope you can find a second opinon soon
Is this an ped Ibd specialist at a larger kiddie hospital ?
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DS - -Crohn's -Stelara
09-04-2014, 12:49 PM   #3
my little penguin
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Paging Briansmom
She had to go to mayo clinic .
09-04-2014, 12:55 PM   #4
Tesscorm
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If there have been no adjustments made to his dosage and/or infusion frequency, I would talk to the doctor a bit more about switching.

It's likely your son will develop antibodies to remicade once he stops using it and won't be able to return to remicade as an option.

Has your GI tried to increase the dose? Typical doses are between 5 and 10 mg/kg. Also, most GIs start infusion frequency at once every 8 weeks but there are many on here who receive their infusions every 4 weeks (my son was moved from 8 to 6 weeks).

Sometimes an immunosuppressant or a period of enteral nutrition is also added (in addition to remicade) and this often helps. Tagging CrohnsInCT - her daughter was having only moderate success with remicade, GI wanted to add methotrexate to boost remicade's effectiveness. Instead, CIC chose to have her daughter do a period of exclusive enteral nutrition and stay with only remicade. The EEN pushed her into remission and she was fine since (she did add metho eventually but that was for reasons other than crohns).

So, if there have been no adjustments made to your son's remicade dosage thus far, it's probably worth discussing other options before quitting remicade.

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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
09-04-2014, 01:50 PM   #5
Maya142
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I wouldn't switch unless you absolutely have to. There aren't very many drugs approved for kids with Crohn's, and you don't want to go through them faster than you need to.

Like Tess said, you could add an immunosuppressant like methotrexate or Imuran/6MP or just shorten the intervals between infusions. My daughter has infusions every 4 weeks and is also on Imuran. At our infusion center, the nurse said kids quite often don't make it to 8 weeks.

The Humira shots are quite painful (my teenager hated them). I wouldn't put a little kid through that unless absolutely necessary, the Remicade infusions are much easier.

There is a parents of young children support group. Tagging Farmwife.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
09-04-2014, 02:42 PM   #6
Farmwife
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HI cre. I'm glad all is getting better.
I understand the what the new specialist saying. Humira is a good drug to treat this disease but like the others have said switching just to switch might be a bad idea.

We don't have a huge verity of drugs, so possible building resistance to one isn't something you want to happen.

Yes Humira as my dd will tell you burns but its not impossible to do.

My girl is starting remicade on Monday.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
09-05-2014, 05:01 PM   #7
Brian'sMom
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I would get a 2nd opinion too!! In my experience No GI will just take you off a medicine without a reason of it not working or allergies(antibodies). There aren't that many biologics to begin with. Once one is crossed off you can't go back to it. After being on Humira for 2 1/2 years, and at the end we were weekly, our KC GI switched us to Cimzia. A month later we decided to go to Mayo for a 2nd opinion. Looking back.. I don't think the Mayo GI would have switched us to Cimzia. But even after being on Cimzia for only a month, he didn't want to move us back to Humira because he said there would be a chance he'd have antibodies to Humira.. and while trying that he might ruin his chances to the newly started Cimzia. We spent a year on Cimzia even tho it didn't appear to be doing anything for my son. Still, he was so reluctant to take us off the last TNF Cimzia.... He tried everything to hang on...(Even tho I kept talking about Stelara!) He kept the same dose after an ileostomy in March so see if the diversion would give the Cimzia some room to kick in... Only until July 21st when he saw that my son's rectum was worse and a new fistula was present did he decide to consider moving to Vedolizumab. And we spent 2 appts with him, over an hour each... And he talked to all his colleagues up at Mayo along with the surgeon before he made his decision that maybe the TNF grouped drugs weren't what my son needed. I would not just switch.. can't you move up the infusions of remicade so you don't have the week that its wearing off? Or do a higher dose?

Just my opinion, of course, But I would want a doctor that is very cautious in his/her decisions when it comes to these medicines.

Let us know what happens Hugs!!
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.

Last edited by Brian'sMom; 09-05-2014 at 05:38 PM.
09-05-2014, 09:18 PM   #8
cre
 
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Thank you all for the responses, they have been very helpful and insightful in helping us realize the importance of a drug that is working. I think I made the doctor sound careless when I said the switch was just to try it, I think he has more experience with Humira and is a big believer in its treatment ability. That being said, we put in a call to his specialist that we just moved from to get her input and are hoping to speak to her this week. He just got his remicade 10 days ago so luckily we do have time to research, but after this lot of responses we are definately thinking on staying the course with Remicade until it seems ineffective. Our old specialist did say to increase his dosage to coincide with his current weight and to infuse after 7 weeks from 8 weeks as he was getting sick for the 5 days before his last infusion. That was the first time he had any problems since getting diagnosed and treated. Thank you again everybody for sharing your experiences as we are still new and naive to this walk of life.
09-07-2014, 12:47 AM   #9
Liquid Bacon
 
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I know a few people personally who switched from Remicade to Humira with good success, and I've been on Humira forever, but I would never switch until a drug has stopped working. Get as many years out of it as you can, because you never know if the other ones are going to work or not.
09-07-2014, 11:51 AM   #10
SupportiveMom
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As a parent that has had my kid through almost every med available ( and now some that are not yet available) I would caution on taking him off Remicade. Unless he has antibodies, you don't want to take him off. It may be the start of Remicade stopping its positive effect, but you want to stay with it if you can.

Humira gives you a bit more freedom as you are not tied to infusion appointments and can work well. After humira though the options run low, especially for kids. We are at the end of the meds list & on a drug I have only found 1 kid on for Crohn's on the drug she is on which is a nerve wracking feeling. Hold onto any drug you can that works for as long as you can.
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Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
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09-07-2014, 11:54 AM   #11
Mehita
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I'll just reiterate what all the others said. Try to stay on Remi as long as you can. The benefit of Remi is that you have options with it by increasing dose, increasing (or even sometimes decreasing) frequency and adding other meds to boost it. What your former GI suggested seems like the best advice.
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
09-09-2014, 01:41 PM   #12
Jenn
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We've made the switch and Humira is working great. But, I wouldn't switch until you're certain Remicade isn't working. Use it as long as you can. Usually, the frequency or dosage can be increased first or an immune suppressant added (like mtx or 6mp) to make it more effective. Looks like that's what everyone else is saying here too. Maybe have your son tested for the antibodies to make the decision, that's how we made ours.
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Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (15mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections
09-10-2014, 09:10 AM   #13
crohnsinct
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Hi there...late to the party but I agree to try to stay on Remicade and was going to ask if adjustments were being made for his weight gain. From 2 to 3 I would imagine he has grown quite a bit and since Remicade is dosed based on weight the amount dosed has to change. It happens frequently that the doses aren't updated as quickly as the kids grow. Also, few kids are able to last the full 8 weeks so schedules are usually tightened up. Throughout my daughter's disease course we have changed doses (anywhere from 5mg/kg to10mg/kg) and intervals (anywhere from 4 to 7 weeks). As Tesscorm said we have also added other treatment options to help Remi's effectiveness.

Sounds like you have a good solid plan. Good Luck!
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
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