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Anyone have a child successfully using Humira?

 Reply posted for joliejetset.

Hi, we have been talking about diet changes as well, and accupuncture, etc.  But, with an active 17 year old, not sure we can control his diet anymore.  With school and his sport, he is not home much, unless he is feeling bad.  What kinds of diets/foods are you looking at?

momneedsinfo

 Reply posted for Raquelita.

My daughter had the same reaction.  Crohns was under control with Humira but had to stop because of sever reaction. She looked like she had Chicken pox.  All over even underneath her eyelids.   We are gonna start Remicade in about a month or so.

 Reply posted for momneedsinfo.

Thank you so much for sharing your story!  I'm so glad to hear that your son came back to himself after stoping the Humira! 

I would like to try a diet change for my son and if anyone else is interested I'd love to start an on-line support group.

My best, Jolie

 Reply posted for Raquelita.

Thank you so much for sharing your story!  It just solidifies my instinct that Humira is not right for us.

Best wishes for you and your family!  It is so painful to see our babies uncomfortable!

My best, Jolie

 Reply posted for alanschachter.

I am sorry I haven't replied in so long!  Actually I am looking for options.  My deep feeling is that aggressive medication is not right for my son.  I am moving towards trying the SCDiet with him, but he is also allergic to tree nuts so that cuts down on a lot of possible substitutes.

Anyway, thank you so much for your information.   If you have a mailing list my email is joliejetset@hotmail.com

My best, Jolie

 Reply posted for labfam4.

My son is 13 and just started taking humira about 6 weeks ago.  His crohn's symptoms seem to have vanished.  So that's the good news.  The bad news is that he developed really bad eczema all over his body.  Apparently eczema is a really rare side effect possible in any of the biologics (including remicade).  

The doctors cannot tell us yet if my son's eczema is caused by humira or something else, so they want to wait and see what happens. If it was caused by a virus (because he was also sick with flu-like symptoms), then the eczema should go away in a few weeks.  But it is also possible the eczema has been triggered by humira.  Unfortunately, like other kids who find themselves on humira, my son has already tried most other IBD drugs, and had to move on because they either did not work, or were wrecking his liver.

But, I read from others that if you get a skin condtion due to humira or remicade, it is reversable once you stop the medicine.  So, if your child really needs to take humira, and you've tried everything else, I think the possible benefits are worth the risks, most of which seem to be reversible (with the exception of the very rare but very scary side effects like infections and cancer which you probbaly already know about). There are lots of people doing well on humira, and the good stories seem to be more common, and most side effects seem to be rare.

There is also the possibility of treating these diseases with diets, bacteria, etc.  I have UC, and am trying several alternative treatments myself.  But I have not tried these with my son, because I haven't had too much success with them.  I use VSL#3, and am on the specific carbohydrate diet for 6 months now.  Both these work somewhat to lesson the UC symptoms, but I still have flare-ups even with these, and I still have to take mesalamine. 

ope that helps, and does not scare you too much! 

Raquel

 Reply posted for labfam4.

Humira is being recommended for my 10 yr old.  Although the biopsies from his two colonoscopies are not conclusive of Crohn's.  I'd much rather not put him on such a serious medication.  

 Reply posted for labfam4.

Hi, unfortunately, not successfully, but thought I would share our story.  My 16 year old son went on Humira last November 2010 when it was determined that the 6mp was not getting him to remission, and we needed to get him off the prednisone as well.  He did awesome at first.  Definite improvement by January 2011 and we were very happy with his progress.  As he went through February into March, he started showing different random signs of distress.  His concentration lessened and schoolwork declined, he became apathetic and easily fatigued, he began getting weak knees/legs and he got horrible tailbone pain for no reason.  It progressed to where we had him at the neurologist because he had definite nervous system impairment. By end of March, he could not count backwards or spell words.  He was not going to school and he could barely stand up.  It was not until I got on certain websites that we put two and two together and determined it could be serious rare side effects of the Humira.  We immediately took him off the drug.  After about two weeks, we started seeing improvement in him.  It took about 6 weeks to get him back to his old self.  It was a terrible time.  Apparently he was one of the few who cannot tolerate it.  We ended putting him back on the 6mp to stabalize him, but as he went through this past summer, he has declined a bit.  He is now taking Methotrexate injections, but does not seem to be tolerating them either.  I feel like we are running out of medications.  I am afraid to try Remicade with him, because of his experience with the Humira.  Not sure where to turn at this point.  Anyways, just thought I would share our experience with Humira.  It was not pleasant at all.  But, I know that so many people have great results with it.  Just not us!

Take care and good luck with your decisions, at this point I feel like it is all a crapshoot anyways.  God Bless!