Crohn's disease??? questions about humira???

Question

I am almost 14 years old and i have crohns disease. i was diagnosed in april of 2007 I started out with all the basics like asacol and imuran and prednisone (BLERG!!!!) but then they stopped working and i was going soooo high levels on prednisone so then i switched to remicade. Remicade worked wonders for like...7 months or so but the last one i had gave me joint pain so bad i couldnt move (i always get joint pain after remicade but this time i couldnt move at all) so i switched to humira. So i've heard its a possibility to get lymphoma from remicade or humira.

2 questions

1) what are the side effects of humira? so far i've had pain obiously from the shot itself and burning for 15 minutes after, joint pain, and some stomach pain

2) is there a higher risk of getting lymphoma from humira vs remicade? or was remicade a higher risk? or is the risk so slim its nothing to worry about?

pleeease help me!! thanks so much

Answer 1

hi hanna, I am a female crohn's pt. for 28 yrs. dxed at age 12.(am 40 yrs. old now) I can totally relate to your concerns and questions.

Are you a candidate for Entocort by chance? It's a steroid but not as potent as prednisone PLUS there are no side effects at all--no moon face, no mood swings, it doesn't get into the blood stream at all, it goes right to the inflammation and wears off after many hrs., there are no eye problems, etc.

I was on Humira for 9 months. The side effects I had were:

Bruising at the injection site on my thigh so I take a bag of ice cubes (not the small thing they give you to numb the area) and numb the area in and around where I am going to shoot myself. Then I wipe w/an alcohol wipe and wait for a few minutes b/c that can cause burning in itself.

It takes several months before you will notice a difference in your symptoms. Be sure to tell the drug company's RN when they call to follow up with you. They did with me. I was given a hotline number to call w/any problems or questions...even if it was a side effect I called.

As w/any biological treatments there is always a risk. That is why you have to follow up w/your GI, get the necessary blood work done, call the drug company if you have questions (I did alot b/c I was nervous at first)  You should've been trained by an RN the drug company sent to your home on how to give yourself the shot along with an information packet.  

Anyway, after the shot, put the ice pack on the area again to numb it.

As for the joint pain, see if you can go in for physical therapy or take a muscle relaxer when it gets really bad. I have back pain, arthritis in my hands, knees, legs, arms. I took PT for all of these areas over  a period of time to help myself if no meds were available.  

If you go to the Crohn's & Colitis Foundation's website, they have information ranging from the newer meds, diet, surgery, support groups for teens, as well as a hotline and live chat run by healthcare experts you can call during the week. There is also an open forum where you can post questions to others like yourself.

Hanna, I know what it's like to be young, dxed w/a serious illness and then having to deal with all of the meds, tests, surgeries, etc.  Definitely check out the ccfa site and locate a local ccfa chapter near you to meet other kids your own age. Also, educate yourself and your teachers so they don't give you a hard time when you have to leave class to use the bathroom. CCFA has brochures you can give to them  so they know how serious CD is.

feel free to email me if you have questions.  I wish you all the best.      

Answer 2

Hi Hannah,

My son, age 13, was diagnosed last spring with Crohn's disease.  He has been taking Humira 40 mgs. every two weeks since 7/30/07.  He takes a multi-vitamin, calcium, and iron.  He uses a stool softener every night.  That's it.  He can eat everything and anything he wants.  The only joint pain he has experienced is from growing so quickly after not growing for a year.  He has the same pain from the shot but it has gotten better over time.  With respect to lymphoma, it is our understanding from the research that it only occurred when 6 MP was given with humira.  Our son is thrilled with the results.  K