Advice re: infliximab/azathioprine combo for 14yr old son

[Louise*]

Heres a little background info...my son aged 14 was diagnosed with CD in october 2013, he started azathioprine straight away and has done EN twice but symptoms returned within two weeks each time, he was then put on Prednisolone but this had no effect, and he has two weeks left of his taper.

He has just had an upper and lower endoscopy and MRI which show active disease at various points along his small and large bowel and mild gastritis.

The next step his gastro team want to take is to give him Infliximab alongside his azathioprine which frightens the life out of me given the increased risk of t cell lymphoma particularly in his age group.

I would just like to get some advice about possible alternatives given my sons resistance to everything so far.

If we opted for just infliximab would he still be at increased risk as he has taken aza at some point (as I read somewhere on here) or because he would still have it in his system.

As nothing has worked so far and assuming Infliximab worked for him we would obviously want to enable it to work for as long as possible and so would need to combine medications to stop him becoming resistant to it, but are there safer alternatives to aza?

I would really appreciate any advice you can give, as we really dont know what to do :sign0085:

 

[theOcean]

I was on a combination of Imuran/Remicade as well as Imuran/Humira without any problems! Your son will also be actively monitored with regular blood tests, and the chance of lymphoma occurring is very rare. So I can understand why you're scared (I've lost family to lymphoma, even), but also know that it can be very effective treatment for severe cases, and can prevent worse flares and future surgeries if it works for your son.

Methotrexate might be another option for your son if you're still worried about it, since it was originally meant to be a cancer medication. But it also has its own side-effects and I'm less knowledgeable about it.

 

[Jmrogers4]

I think the risk is there for methotrexate as well. It is so hard making these decisions for our precious children whom you would move heaven and earth to protect.
My son's GI prefers the metho/Remicade combo for boys as opposed to the Imuran/Remicade combo but my son had a bad reaction to methotrexate when he used it as his sole medicine so a dual therapy with it was not an option for us.
We dropped the Imuran at his first remicade infusion in January and are currently only doing remicade in a wait and see if we need dual therapy. So far so good but he has only been on remicade for 4 months. I will tell you I was absolutely terrified to start remicade and fought it for a long time but he is doing fantastic now. He gained weight and appetite improved almost immediately. He has grown an 1" since starting.
We started with Imuran and then tried methotrexate but after the reaction went back to Imuran. Tried LDN for about 18 months and had good results but wasn't enough to pull him out of a flare brought on by c-diff. So remicade and based on how well he is doing on it I wish I would not have fought so hard but trust me I totally understand having to look at every other possible route.

 

[shamrock15]

I am currently on remicade/imuran - been on for 5 years now (I am 45 though). It sounds like your son has skip lesions, same as I had. This current combination is the only thing in 25 years with crohn's that has done the trick for me. There are legitimate concerns with the medications. Had these been available when I was diagnosed, it would have saved me 6 surgeries and probably 10 usable years of my life. My opinion is that it is worth a try. If your son's case is indeed similar to mine, it could save him this crucial point in his development. Without it, he will likely face many courses of prednisone and its wonderful acne side effects, the possible embarrassment of the bowel accidents at a time when he could suffer some serious social impacts. If it gains him the ability to get through his teens and develop into a healthy young adult, he will be better equipped to deal with possible problems later in life.