6mp

[Jenr1016]

Okay doctor wants to put my son who is 11 on 6MP. I am scared to death. Please I need to hear from you guys with your kids experience on this medication. I am scared he will be sick all the time bc his immune system. I keep hearing boys are increased risk for cancer. My dr is not a fan of Mtx but is that a better choice? I just sent my paperwork in for a second opinion at CHOP but that will take a while.

 

[Cupkatemom]

My daughter is 10 and was diagnosed in December. She has been on Imuran, similar to 6MP, since January. We have had no difficulties with the drug. Some sinus infections have taken longer to heal, but when the rest of us got a stomach bug in February, she was the only one who didn't get it. Our doctor described it as bringing her immune system back to normal and that we should have no concern with her being more likely to get sick. I get your worries, though, I felt them too. Reese is getting her flu shot this week b/c the flu is already going around and I don't want to take the chance. Hang in there!

 

[Mehita]

Just to clarify, 6MP is the drug you're talking about and 6MMP is a test done that monitors how well the drug is working.

My son was on the sister drug to 6MP for six months with no adverse reactions, no side effects. He was just as healthy as the rest of the family (aside from Crohn's). We did increase our hand washing and things, but otherwise had no issues.

The risk for teen boys is the combo of the immunosuppressants along with a biologic, whether taken concurrently or not. It's the combo. And some studies have disputed that teen boys are the only ones at risk... it's a risk for anyone who has ever been on the two drugs.

Another thing to consider, some insurance companies require a step up approach and may say that you need to try 6MP before you can more to methotrexate.

Good luck!

 

[CrohnsKidMom]

Our GI usually tries Imuran (similar to 6mp) before Methotrexate, but I think that is mainly because it is easier to take. It may also be for insurance reasons, and I think Imuran has been in use longer for IBD than MTX as well. Unfortunately, my son was not able to tolerate Imuran (consistent sky-high fevers and elevated liver enzymes), so MTX injections was our next choice. MTX does come in a pill form, but our GI would not prescribe it as it can be hard on the digestive tract. Just a little more food for thought...

 

[Maya142]

My daughter started Imuran, which is very similar to 6MP, (she was already on Remicade) in June because her calprotectin had gone up to 480+ (can't remember the exact number). She was very nervous about starting but really didn't have any side effects at all!

She's on a very high dose of Remicade and Imuran and does not (so far!) get sick more often than any of us. Her bloodwork was done weekly in the beginning and her doctor watched very carefully but she had no issues. She has Imuran at night after a small snack (no milk though since it interferes with the absorption of Imuran).

We have done Methotrexate too and my daughter got very nauseous from it, to the point where she was in bed and dizzy for almost two whole days every week. She hated it. Some kids have absolutely no problems with it though, hers was an extreme reaction. MTX worked very well for her though.

 

[Momtotwo]

The drugs are scary, and I won't downplay that. Ideally, our kids shouldn't be on any medications. But they need them and we have to weigh the risks. We were offered 6MP or Remicade/methotrexate. We were not offered methotrexate alone but other kids have success with it. (Not sure why it was not an option for my son. I assume it was extent of disease.) After a lot of research, asking questions here and elsewhere and discussing with our GI and second opinion GI, I can tell you I was comfortable with either treatment- 6MP or Remicade/ MTX. I hated the thought of starting my son on drugs. BUT I knew what would happen if I didn't.

 

[Chester31]

My 15 year old son was diagnosed in June 2013. I desperately wanted to avoid medications so we tried 8 weeks of EEN which got rid of his symptoms for a while but his inflammatory markers soon started creeping back up. It was difficult to convince him that he needed to take anything more than Pentasa as he felt 'fine' but his IBD nurse did a great job explaining the risks of ongoing, uncontrolled inflammation to him. He's now been taking Azathioprine for a week - first bloods tomorrow. The side effects of these drugs terrify me but so does the idea of simmering inflammation which could lead to scarring and strictures or possibly even cancer further down the line. Good luck with whatever you choose.

 

[Sascot]

My son takes 6mp and has done for a year and a half. So far okay, no side effects apart from some tiredness, but the tiredness could be worsened by the fact he is a teenage boy :ybiggrin:. It seems to be keeping his Crohns under control. Hope it works for your son

 

[malorymug]

Hi, my 13 year old boy started on 6mp 5 months ago and is doing much better now. The drug is scary but crohn's is scarier. The benefits to 6mp is it is just one pill a day. He can take it and forget about crohn's for the rest of the day.

 

[Mehita]

We only have experience with 6MP, but from what I've read here, I think kids tend to have more side effects with methrotrexate than 6MP.

Someone correct me if I'm wrong...?

 

[Jmrogers4]

We personally had more side effects from Methotrexate than Imuran.
No side effects from the Imuran it wasn't quite strong enough for my son but it has kept my husband in remission for about 13 years

 

[my little penguin]

Our exp was the opposite
6-mp went to his liver
Mtx not so much

 

[Pilgrim]

We just started Azathioprine (like 6-mp) with our 3 year old this past week. So, no experience, but wanted to let you know I can empathize with your worries.

Keep us posted on how things go.

 

[Ands]

My ds came off 6mp nearly 8 weeks ago, it just wasn't right for him. He was 11 when he started it. We do know that he is very drug sensitive though so don't let our experience worry you. He didn't suffer any more common colds than the rest of us though!

Waiting for another MRI before deciding on our next course of treatment, currently ds is on no 'big treatment' and this is also frightening!

Best of luck. Xxx

 

[aliwind]

My son Ryan was diagnosed with Crohn's a month after he turned two. He has been on Sulfasalizine since then. He just turned 7 in September, so 5 years ago. At 5 years old, we needed to try something stronger to help keep the inflammation down, so he would grow. It has now been a little over 2 years, since he started 6MP, with no side effects. He has had about 1 flare up a year that averages about 6-8 weeks. The last flare up during this last Summer, I had major guilt. My husband and I have been fighting over his medication for the last several years. He thinks he doesn't need it, I am taking our GI's advice and continuing with it. He hasn't had any side effects and he seems to grow, just at a slower rate. During the Summer, my son spent a week at my mom's house and we forgot his medication. My husband refused to turn around and go back to the house to get it despite being only 10 minutes away from the house. Within 4 days, my son was showing signs of a flare up. His Cal Protectin was over 2000 and he had bloody diarrhea for over 8 weeks! After that, I KNOW without a doubt that he needs his 6MP. The only time he ever gets a flare up is when we miss a dose or two, his has a cold or is stressed like the first month of Kindergarten. I would recommend it. Again, knowing how crucial it is to get Crohn's under control out weighs my fears of possible long term side effects in the future and his stunted grow.

 

[Johnnysmom]

My son was 11 when he was put on 6mp and has been on it for over 3 years now. He is in solid stable remission and has grown 9 inches and gained 80 lbs. He is very healthy and gets sick less now that before he was diagnosed. His body is definitely healthier now that his disease is under control even though he is on 6mp. He has no side effects.

We do need to be careful once he does get sick. If he has a fever over 101 then he isn't to take his pill that night and we head into the dr the next day. His body doesn't always show normal signs of infection so he needs to be checked for ear infections etc if he gets a fever. He gets sick very infrequently, much less so than many of his classmates!!