Community Forum

Just wondering if anyone has a child who did not respond to Remicade but did respond to Humira?

 Reply posted for Andie.

I find that its easier to inject into my thighs. Doesn't really sting at all in my thighs. You can tell her to hold an ice pack onto the injection site for a minute or so before you inject-this should make it easier.

 Reply posted for Andie.

I know what you mean about trusting the claims of all natural cures, would certainly love for it to be true, but why aren't there many, many more people sharing if it is true.  Even  the LDN sounds questionable.  Do you know of any one on it? I did talk to a woman at a support group meeting whose son is using the LDN and has been on it for just about 3 months. She feels it is helping to lessen a rash that he gets from his Crohns.

Has your daughter tried squeezing one of those stress balls while she gets her shot?  Or maybe even blasting her favorite songs to take her mind somewhere else?  Maybe even some music for you too!  I can certainly understand how you must feel too.  Do the docs give any tips to ease the pain of the shot? I have a friend whose son (in his twenties) uses it and I could ask for some tips for you.

Take care

 Reply posted for labfam4.

Hello!  I'm never quite sure to make of the posts with the all-natural cures - they seem so fake but I can never truly tell...

My daughter is now 11, and she was diagnose three years ago.  I give her the injections, which are the pre-filled pens, like an epi-pen.  She carries on and cries and I have asked her to think about giving them to herself (I dread them as much as she does), but it literally takes 10 seconds, she cries for a minute and we're done.  It's so much easier than the long Remicade appointments, even though they are more frequent.

I find the hardest part of parenting a child with Crohn's is that I never know if it's a flare, or just a regular stomach thing.  I tend to panic and over-react every time she says her stomach hurts.  It's so hard to know what's going on.

Take care!

Andie 

 Reply posted for Andie.

Hello Andie,

My daughter is 15 and was diagnosed with Crohn's 4 1/2 years ago.  Her doc didn't say that it absolutely wouldn't work, but did say that her chances were lower because she wasn't creating antibodies.  Just saw doc today and she still thinks there may be another infection going on, so more stool tests.  So far planning one more try with the Remicade and will try a small dose of a steroid in the IV.

I absolutely agree with you that everyone responds so differently to each med. I just don't want to jump too soon.

Glad your daughter is doing well with the Humira! How old is she?  Is she or you able to give her the shots?  Is she tolerating the shots?

Thanks for sharing

 Reply posted for labfam4.

That must be frustrating.  We started Remicade after other meds didn't do anything for my daughter.  And although her initial reaction to the Remicade was positive, it was never as great as we had hoped.  Her sed rate and CRP went down, but only about halfway, and then stopped and never really got better.  Her nurse wanted to increase her Remicade dose, which was when I freaked out because I was sure it was affecting her physically. 

The first day she had her Humira shot, we did it in the hospital so they could teach us and then we had bloodwork.  The bloodwork was about an hour after her initial dose, and her numbers were absolutely fabulous.  I had no idea it could work so quickly.  It's been great since.

So, if your daughter was creating antibodies, they'd be willing to switch her to Humira, but because she's not they say it probably won't work any better than Remicade?  I guess that could be true, but everyone reacts to differently to each med, they should give it a try.  I know it's never that easy.  Are you still pushing for the switch?  Good luck!

How old is your daughter?

Take care,
Andie

Thank you for your reply, I'm glad to hear that your daughter is doing so much better!  My daughter has had some relief with the remicade, but not has much as we had hoped.  She would have increased, loose stools and cramping within a couple of days of some of her remicade treatments, but not every time.  She had the answer ifx test performed and it showed that she was NOT creating antibodies to the remicade.  Her doctor therefore feels that she has less of a chance of responding to Humira.  Not sure what is going on, after her last treatment in Dec, she continues to have blood in the stool (stool specimens are normal). We will see her doc next week and I'm guessing will have to have a colonoscopy scheduled.

Thanks again for your reply.

 Reply posted for labfam4.

Hello!  My daughter has Crohn's disease and was on Remicade infusions for less than a year.  She started having very weird reactions after each infusion, and her dr. wasn't convinced it was from the Remicade.  Her bloodwork wasn't as good as it had been, so they tested her for antibodies and had to take her off of Remicade. 

Her reactions started a few hours after we got home from the infusions and would affect her muscles - she couldn't walk or stand and was very grouchy and just sort of out of it.  The first time it lasted a few hours, the second time for a day or two, the third (and last time) it lasted a few days.  Although I love her doctor and nurse, I am still upset that my gut was telling me that it had to be related to Remicade and because it was "Atypical" they didn't believe me.

She has now been on Humira for almost two years, and she has never been healthier.  She is strong, active, she's back to her old happy self, and I can't say she is symptom free but she's as close to it as possible.  She despises the Humira and the injections, and I can't get her to open her mind to how short the pain is vs. the enormous benefit.  It's her body, and she's entitled to hate the meds and the fact that she needs them.  As a mom, I can't say enough good things about Humira or the effect it's had on my daughter.
 

Good luck!

 Reply posted for labfam4.

Hello!  My daughter has Crohn's disease and was on Remicade infusions for less than a year.  She started having very weird reactions after each infusion, and her dr. wasn't convinced it was from the Remicade.  Her bloodwork wasn't as good as it had been, so they tested her for antibodies and had to take her off of Remicade. 

Her reactions started a few hours after we got home from the infusions and would affect her muscles - she couldn't walk or stand and was very grouchy and just sort of out of it.  The first time it lasted a few hours, the second time for a day or two, the third (and last time) it lasted a few days.  Although I love her doctor and nurse, I am still upset that my gut was telling me that it had to be related to Remicade and because it was "Atypical" they didn't believe me.

She has now been on Humira for almost two years, and she has never been healthier.  She is strong, active, she's back to her old happy self, and I can't say she is symptom free but she's as close to it as possible.  She despises the Humira and the injections, and I can't get her to open her mind to how short the pain is vs. the enormous benefit.  It's her body, and she's entitled to hate the meds and the fact that she needs them.  As a mom, I can't say enough good things about Humira or the effect it's had on my daughter.
 

Good luck!

 Reply posted for mhat57.

I see that several has successfully switched from Remicade to Humira.  It seems that most of the comments are regarding Crohns  patients.  Have any patients with UC been successful with the switch?  Our GI docs believe that if Remicade fails, then Humira will not work for our son either because they are similar drugs and Humira is more successful on Crohns patients.   Would love some feedback on Himira and UC.

Cheri

She started to experience symptoms such as joint swelling and pain and eye irritation.  Our physician, based on her time on Remicade and symptoms, suspected that she may no longer be benefiting from the Remicade infusions.  The test confirmed it ... thus the switch to Humira.

 Reply posted for davidjakob.

Remicade is a lifesaver.

 Reply posted for mhat57.

Why did she have to switch from Remicade to Humira?

My 26 yr old daughter has been on only Remicade for almost 10 years, and it has been a lifesaver! She needs a colonoscopy to continue though and can't afford and insurance won't cover it..................

 Reply posted for davidjakob.

My 20 y/o daughter, after 3.5 years of successful Remicade infusions, recently had to switch to Humira.  Based on symptoms, we also had blood work sent through Prometheus Labs, and they found antibodies to Remicade as well.  She's had 2 Humira injections thus far.  Hopefully she'll do well both physically and emotionally.  One of the reasons she liked the quarterly Remicade infusions: she could almost "forget that she was sick" in-between.  Carrying the medicine, self-administering more frequent injections, disposing of needles, etc, puts things in a different light.  I know our kids are resilient, however, so the most important thing is obviously the continued effectiveness of the medication. 

She's had a series of ailments recently that have been disconcerting.  Joint pain, pneumonia, breathing issues (making deep breaths painful), and teeth and gum issues.  I assume these are all immune system related, but I'm interested in any feedback on that.  Hopefully she'll have better luck the longer she's on Humira ... but I welcome any advice along those lines (preventative measures; etc.).  I know you all feel the same way, but it's heartbreaking to see your child go from physician to physician, when other kids her age are worried about what's for lunch. I know we are blessed ... because there are worst conditions out there ... but it's still difficult nonetheless.

Sorry I mixed subjects a little bit here ... but any thoughts, feedback and/or encouraging words are welcome.  Thanks Team!

 Reply posted for Riodc.

Thank you so much for the insight!!!

 Reply posted for davidjakob.

I understand your concerns in going to an anti-tnf drug.  It was a difficult decision to put our first son on Remicade right from the beginning.  But fistulas are very hard to treat, and anti tnfs were the best option.  When our second son was diagnosed a year later, we tried 6mp to no avail.   So, they both use Humira now.  So, I can tell you, on ant-tnfs our sons rarely miss school.  They have each had a cold over the past 1.5 years, but that's about it.  So, the immune system compromise has not been an issue.   Their Crohns is in remission, they are participating in sports and normal activities on a daily basis.  They do not take any other meds for Crohns (or anything else). We do get flu shots every year.  We have seen no adverse side effects to date.  A couple things I would like to point out with Remicade and Humira....(both boys were on Cimzia for 6 months and it was ineffective). First, Remicade has been around longer, and that is why we chose it in 2008 for our first son.  Secondly, Remicade has mouse protein in it, and doctors believe that is why it is rejected by some patients.  Thirdly, Remicade is an office IV given over 2-3 hours every 6-8 weeks (monthly in my sons case) where as Humira is an injection given easily at home every week or every other week..  Insurance sometimes treat Remicade differently and it can cost more to the patient because it is an IV given at the doctors, so check on that..  Also, doctors do receive income from administering Remicade, due to how it is administered, however they do not for Humira.   If Humira had been around as long as Remicade in 2008, we would have chosen Humira at that time.  We use Pubmed online to look at research regarding all these drugs, so you may find it helpful.
hope this helps.  Sorry for the delay, I tried to post earlier and for some reason it didn't.

I also have twin boys. Only one has Chron's and is being treated currently with po meds. He is starting to have more symptoms and we are considering Remicade. I would love to hear your story and thoughts on Remicade ets.  We have been reluctant to start this med...it seems so extreme. Just looking for advice....

Sure.  He threw up as he was getting the infusion, on at least two occasions.  First he got red, and felt dizzy, then vomited.  We slowed the drip down and that did help, but it was an indicator of a bigger issue.  Following  the two instances, we had the office send blood work to Prometheus Labs, and they found antibodies to Remicade, and they measured how much was in his system at the time of the blood draw, which was 17 days after the infusion, and by that point the level of drug in his system was too low to be effective.  Prometheus was the only lab at the time that ran those tests.  I think it was $250 and I can't remember if insurance covered it for us.  Interestingly, I don't think they offer the same tests for Humira.  Not sure if that is because it is a newer drug, or what.  I hope your child is doing better, it is no fun when they are not doing well.  We are watching one of my sons, as his sed rate and crp rates are somewhat elevated--the only lab indicators we have to see how they are doing!  It is the same one that took Remicade, and whose Crohns is somewhat more severe.  So, Humira has worked well, and we are very thankful as they are in puberty and growth rates can be so affected--but it too may not last as long as we would hope!

 Reply posted for Riodc.

I'm glad your sons' are doing well on the Humira. Would you mind sharing what your son's allergic reaction to the Remicade was?  Also, can you tell me what test was done which revealed that the Remicade was leaving his system in 17 days?

Thank you

Although I don't have your exact situation, I do have a son who began treatment for Crohns with Remicade.  He did respond, for nearly one year, but had to have infusions every month during that time to maintain results, and eventually developed an allergic reaction, and through testing, we found the drug was leaving his system within 17 days and so was no longer effective.  We tried Cimzia, but it was ineffective.  We then went to Humira and have been using Humira one time per week, successfully for 1 and a half years.  His twin brother also tried Cimzia, it was also ineffective, and since he has also been using Humira for 1 and a half years, on a weekly basis.  He never used Remicade because of his twin brother's experience, higher allergic rate, higher cost, and inconvenience of administration of the drug.
if you have any questions, please ask.  My sons began Humira at age 12 and are now 14.  We do not use any other drugs at this time.  I hope this was at least somewhat helpful.

 Reply posted for mblyons.

Hello Nolan's Mom,

Thank you for your reply, I hope your son is doing well.  My daughter seems to be doing better since she finished a course of Flagyl.  She had the Answer IFX test done and the results showed good levels of Remicade and that she is not creating antibodies to the medicine at this time.  So keeping our fingers crossed.

 Reply posted for labfam4.

Hello,

My son tried remicade and it worked in the very beginning, but developed antibodies within a few months.  We switched to humira and he definitely responded in a great way.  He is the best he has ever been.  He has been on it for about 3 years, and we are starting to explore the fact that it may not be holding him over as well, so we are currently looking at our options.  But, I can tell you that he has done very well on it!

Good luck with it!

Nolan's mom

My daughter is 15 and has had 7 remicade infusions; after her 5th infusion she had about 2 1/2 good weeks and then did just ok after that.  Her symptoms started worsening after the last infusion. It was also the start of her first year of high school and I know stress played some part in that.  Well she will have a blood test next week to determine if she is creating antibodies to the remicade.

I hope your son does well with the humira.

Thank you for your reply!

 Reply posted for labfam4.

My 14 y/o son has been on Remicade fro the past 31/2 years and it just stopped holding him about a month ago.  He just started Humira a week and a half ago and is still experiencing some symptoms of inflammation.  I too am holding my breath and wondering whether this will work for him.

Thank you for your reply, I'm glad to hear you are doing well on Humira.  Wishing you continued great health!

I am not a child, I am 51, but I used remicade in past for 3 years, didn't work, I have been on Humira for the last 6 years and doing great.