Worried about daughter's medications

Good evening to all. I am the mother of a 16-year old girl who has been diagnosed with Crohn's disease. She had been very ill since last spring, when she lost 25 lbs. unintentionally, severe chronic fatigue for 2 years, stomach upset, and joint pain. She was treated with Remicade infusion therapy last Wednesday. The doctor wants her to be on Mercaptopurine (6MP) as well. I realize that this cocktail of drugs is extremely toxic and could be lethal. However, I don't want to undermine doctor's orders. I would like to know if anyone has been on this treatment, if so, how long? how did they feel after taking 6MP? and how are they doing now? Please feel free to share your story. Thank you!

Post Edited By Moderator (Ides) : 2/27/2015 6:19:15 PM (GMT-7)

Welcome to the forum. I'm sorry you even need to come to such a place, but I hope you will find some good information here and find some good support from the other members. I'm sorry your daughter has been dx'd with Crohn's. That's the same age I was when I was dx'd (25 years ago). Remicade wasn't available then.

I took remicade for 5 years. During part of that five years I also took 6mp. When I was on the remicade/6mp combo I went into remission. I completely understand your concerns. These drugs are heavy duty and nothing to sneeze at. That being said, I wouldn't go so far as to say she is on a "lethal" combination. She will need to take precautions and avoid sick people, but if her doctor is recommending that she take the two together, then the severity of her disease must warrant it. If you are unsure, please ask the GI his/her reasons for wanting to take such an aggressive approach. The research shows that this combination of drugs is the most successful at inducing remission. My guess is that because she is so young and has been hit so hard, the doctor is trying to get her back to health in the most successful way.

I have taken the biologic/6mp combo a few times over the years. Every time I did, I went into remission. 6mp always made me feel utterly exhausted. Other than that, I didn't have some of the side effects that some people have like nausea. One time it gave me headachesm but those stopped after three weeks. I've been on it for as little as 3 months and as long as a year. I know of people who have taken it for years.

I am no longer on remicade because I built up antibodies to it, but I am on another biologic called Stelara and I am also taking Imuran (it metabolizes into 6mp in the body). I am not having any negative side effects from either of these meds right now. This combination has induced remission. A year ago my colon looked so bad that one doctor was recommending a colectomy. I just had a colonoscopy this week and my guts are in great shape. I know it's this combo of meds that has done this, and kept me from having surgery.

I know you have a lot to worry about, but I wouldn't panic just yet. This combo might be exactly the right thing to get her back to health. Ask your doctor whatever questions you can think of so you can have more peace of mind.

I don't know if I answered your questions all the way or not, but I'm happy to help in any way I can. Hopefully more people will come along and give their experiences as well. Hang in there, mama!

Stef

Hi!
I've been on remicade for almost 5 years now.
In June 2013, I started on 6mp as well.
It took three months to kick in and actually make a difference for me.
During those three months, I felt extremely nauseous and fatigued.
When it kicked in August, the nausea went away for the most part. And the only difference in symptoms I had was that I had slightly firmer stools.
By December, I had noticeable hair loss and my doctor prescribed folic acid.
My advice is to try it and see what happens with your daughter after 3 months.
Does it make any difference in her symptoms? How does she feel when she's on it?
She's already so young and on drugs for very severe crohns.

They used to recommend taking 6MP with Remicade to lessen the chance of a rejection or reaction but the newer studies recommend against using the two together now, especially in children. The combo of the two drugs was increasing the risk of a certain type of cancer in kids. I would find a new doctor.