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Crohn's Disease Forum » Parents of Kids with IBD » Combination Therapy, too risky?


03-22-2017, 09:38 AM   #1
farmerswifey
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Location: Queensland, Australia
Combination Therapy, too risky?

My son has recently come out of remission and is back on 6mp, tests and scopes have confirmed this. His primary symptoms are weight loss, anemia, slow growth and sore joints, he doesn't have a lot of tummy/poo issues.

Recent EEN hasn't induced remission so his dr is wanting to start Humira but stay on 6mp as well. I understand the risks we take with these drugs and our kids but of course I've been reading about this combination and it's scaring me. Increased risk of a certain rare cancer found primarily in young males being treated with both medications and because my sons Crohns is 'mild' according to his dr, why would he need to be on both?

I'm emailing the dr tomorrow with my concerns, he is very experienced and top in his field so I'm sure he will communicate his thoughts, but it's late and I'm stressing here! It's so hard to be my child's advocate and hope I'm doing the right thing for him...
__________________
Mum to Mr C aged 11

Crohn's Disease
Diagnosed 21 Aug 2012
EEN 27 Aug 2012
6mp
Allipurinol

Remission 17 Mar 2014

Currently healthy, playing football, obsessed with Lego and Star Wars!

Knowledge is Power
03-22-2017, 11:24 AM   #2
Maya142
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The risk is scary. Many doctors are starting to use Methotrexate in combination with biologics if possible (instead of Imuran or 6MP). Our GI only uses Imuran/6MP with biologics if the kiddo cannot take MTX.

MTX is safer, in terms of the cancer risk. I would ask about that.

Honestly, many GIs are treating more aggressively now. It's because research shows that kids have the best chance of avoiding surgery and complications if treated early and aggressively. There is also growth and development to think about - you want your son in remission as fast as possible, so he can continue to grow and gain weight normally, especially at his age.

My kids have been on combination therapy for years. My older daughter is on Humira and MTX, in fact. I was terrified at first, but honestly, they both have done really well on these meds. Now I'm just so grateful that biologics exist.

Neither of them has ever had side effects with Remicade/Humira.

I will tag some other parents who have kids on combination therapy:
my little penguin
pdx
Clash
Mehita
crohnsinct
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
03-22-2017, 12:26 PM   #3
FightingforJo
 
Join Date: May 2016
I so very much understand your worry and concern. I was right there with you about a year ago. My daughter (now 13) has been on combo therapy of Remicade and MTX injections since last May. We tried Remi only for a few months but she was just getting worse and worse. Finally her GI said that it was time to add a med and recommended 6MP. Thankfully for this board and other research, I had read a lot of the studies of the increased risks with combo therapy, specifically in young males, and even thought she is female, I had concerns. I felt like I had educated myself enough to know what to ask her doctor about, express my concerns, and ask for something different. I said I wanted to try the MTX and she was all on board with that. The combo worked miracles and she has been feeling amazing and in clinical remission since last June.
You are doing a great job being your son's advocate! Don't be afraid to question his treatment and ask for what you want.
03-23-2017, 01:10 PM   #4
Mehita
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When you say he's back on 6MP, does that mean he stopped for awhile?? Even mild disease requires a continuous maintenance medication to keep one in remission. If he's been on 6mp this whole time and flared again, it could be a sign that he needs something stronger like the Humira your GI is suggesting.

My son is on Remicdate and methotrexate. Initially it was just Remi, but he started building antibodies to Remi so his GI added the mtx. I believe there was a recent study saying there is less of a risk of cancer using mtx vs 6mp or Aza, so that's something you can ask about.

Overall, your primary goal is to find the right med combo to keep your son in remission and healthy, right? Yes, there is a very small risk of the lymphoma (does someone have the stats for her??), but your son probably sits in a car one or more times a day. There is risk of a car crash there as well and probably higher even than the lymphoma risk. It's a matter of perspective, in a sense.

I know it's a hard decision and even harder to process when you're tired and stressed, but coming from a mom who waited too long to get the right treatments for her son, I just urge you to take your doctor's advice and not hold off on treatment because of your fears. I did that and my son was the one who suffered for it. Keep asking questions, keep learning. Hugs to you!
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
03-23-2017, 02:12 PM   #5
Maya142
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The stats are in this presentation: http://programs.rmei.com/CCFA139VL/

I believe the risk is 6/10000 on combination therapy for lymphoma.

The rare kind of cancer that affects adolescent boys (mostly) has only been linked to 6MP and Azathioprine, not MTX.
03-24-2017, 06:38 AM   #6
polly13
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As others said maybe ask about Methotrexate/biologic combination. Lucy is on Methotrexate and humira and while the potential side effects are enough to keep you awake all night every night, it really has allowed her to live a normal life. Talk to your GI and get all your questions answered before you decide on a course of action.
03-26-2017, 04:11 PM   #7
Farmwife
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Grace had done mtx, Sulfasalazine and Remicade at the same time. Oh throw in a in prednisone burst for good measure.
I hated it all! But I hated her disease(s) even more.
She had no real side effects from any of it.

She now is on Remicade and Imran.
I hope you get answers.
Remember, it's all a different for each.
Each family had to weigh the pros and cons.


Hang in there!
__________________
I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
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