6MP combined with steroid

[rmk]

Hi, my son, 11 yrs was finally diagnosed with crohn's, after about a year and a half telling doctors his constipation was a symptom and not a cause of severe pain. We thought he was gluten intolerant and had him on a special diet which sent the crohn's into remission for a year. He's been on the EEN diet since february and did great at first but when we introduced food (all combinations with the drinks) he started to have trouble again. from August he was waking up at night screaming in pain again. His team have decided that the best course of action is to skip the Budesonide only option and go straight to the combination of immunomodulators (6MP) and a steroid. We are so scared with him being pre teen and only coming into his developing years but his small intestine is covered with ulcers on the outside and we are worried he will develop tumours if we don't and the possibility of cancer if we do. If anyone has had a child on this treatment and can share their experience with us it would really. :sign0085: rachel

 

[muppet]

My 13 year old is on Prednisone with 6MP right now and it's working well for her. She's been on this combination quite a few times in the past 10 years. Unfortunately we have a lot of issues with Sarah getting her back off of the steroid. We frequently end up doing two courses when we fail to wean her off the first, but we've never had issues weaning from the second.

She definitely gets colds easier and brings home more bugs from school, but that's been the only ill effect for us. The benefit greatly outweighs the consequences. There's a risk of cancer if you don't treat, too, from the active disease.

 

[AZMOM]

Prednisone & 6MP was how we started back in 2009. The prednisone kicked the Crohn's into remission and the 6MP kept her there for 18months before we had to make a medication change. I understand the risk/benefits of treatment but also understand it seems scary. Have they already checked his TPMT to be sure he can take it?

Julie

 

[Dexky]

That was my son's first course also. It worked well for us for 18 months also. We too changed meds to Humira this spring. There are frightening possibilities with all of them though. You have to weigh risk/benefit and make the most informed decision possible. Best of luck to you Rachel

 

[DustyKat]

Hi Rachel and :welcome:

I'm so sorry to hear about your boy hun. :hug:

There are many parent's here that have had their children on a similar combination to what your doc is suggesting and we share the same fears and concerns.

My children are a little older but my daughter has been on Azathioprine for 5 years now with no ill effects. She commenced it following surgery and has been in remission since that time.
My son was on Prednisone and Azathioprine. The Prednisone didn't really work but it was found he had other complications so they have accounted for that. He has continued with Azathioprine, he has also had surgery, and he is now in remission.

Neither of them have appeared to have any side effects from Azathioprine.

The steroid will be for a limited time and as it phases out the 6mp will take over.

Good luck hun and keep us posted!

Dusty. xxx

 

[rmk]

Thank you everyone for sharing your stories with us, we will ask about the TPMT Julie, I haven't heard that mentioned before, we are trying to ask as many questions as possible so we can make the right choices for Tadhg, it's comforting to know he may get some relief from his symptoms so he can have his childhood back.
all the best,
Rachel