Questions about treatment options: Remicade and Humira

[skendall]

Hi everyone! I haven't posted anything in a while but I had a lot of questions regarding treatment options for my Crohns. I was diagnosed back in December, and since then we've tried a number of different medications, none of witch have seemed to improve my symptoms. At first I was on prednisone and imuran, but the imuran had to be stopped because I was found to have the genes giving me the potential to develop a rare type of lymphoma, which could surface with the use of imuran. So, we moved on to apriso and rowasa, while trying to wean off the pred, which was causing awful side effects. When the apriso had little effect, we tried remicade. Remicade was AWESOME for my first 2 treatments, I was almost symptom free and completely off the prednisone! However, during my last infusion, I had a reaction to the remicade, and ever since then it has stopped working completely. My symptoms have returned, and I feel terrible most days. I'm now back on prednisone to try and stabilize things, but so far it isn't helping. I'm afraid that I may have to stop taking the remicade, but I don't see my Gi for another week, so I'm not sure what will happen. We have been discussing trying humira, but I have no idea what treatment options are left after it...I'm hesitant to try that for a couple reasons: 1. I'm a teenager, and I've heard the drug can carry adverse side effects in adolescents 2. I'm absolutely terrified of getting injected in the leg with a needle (that may sound silly, but I have severe anxiety about shots and any type of needle)
I guess I just want I know a few things about humira in general. What are some side effects? What are some of your experiences with the drug? How often do you have to take it? Also, if the humira doesn't work, what other options do I have? Thank you to everyone for taking the time to read this!

 

[Patricia56]

Other options to humira include cimzia (2 injections a month at the same time); LDN (controversial - talk to your doc); Methotrexate; Thalidomide and a couple of really new meds that I doubt they would be willing to go to yet.

My son did Humira for 2 1/2 years by syringe. I have heard that it is better to use the pen - you can't see the needle apparently and it may be less painful. Humira is painful when injected but the pain goes away in a few minutes. You do an injection once every two weeks.

The only side effects my son had were fatigue the following day and feeling like he had bad allergies the day of the injection. Once we started pre-medicating with benadryl and doing the injection just before bed he did pretty well except for the fatigue the next day.

He did his injections in his belly. He found this much less painful than in his thigh.

Otherwise he had no side effects. I haven't heard of any side effects particular to teenagers so I don't know what that might be that you've heard.

Has your doctor ordered a trough level done? This is a measure of the amount of remicade in your system right before you do your infusion. They should also have done the HACA testing although it can be hard to get insurance companies to cover this. HACA testing measures whether you have developed anitbodies to Remicade. Usually, if you've developed antibodies Remicade is discontinued.

Methotrexate is usually done by injection at least at first and takes several weeks to kick in. If the prednisone gets you into remission they may be willing to try that.

Another option is to try Enteral Nutrition. You drink formula instead of eating anything. This can be very effective but is usually not a long term solution. It gets you into remission while you are waiting for Methotrexate or one of the other meds to kick in.