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06-06-2017, 08:54 AM   #1
honey560buddy
 
Join Date: Jun 2017
Increasing Imuran

Hi there! Im a newbie! My 6 year old daughter was diagnosed with UC pan colitis 2 1/2 years ago. She was put on Pentasa and did great for about a year and a half although she still had bellyaches and had to watch what she ate. Then, she had a flare. We did 2 months of steroids and added 50mg of Imuran and monitored labs closely. She suddenly was able to eat whatever she wanted with no bellyache. Her stool has been completely normal for almost a year now flare free. He recently took her off of the Pentasa since the Imuran is working so well. He does labs now every 3-4 months and she has been great. He recently checked her 6-mp metabolites. I got the results yesterday and it shows she is way below theraputic level so he wants to increase her to 75mg. I am having a lot of anxiety about it because I already dont like the idea of her being on Imuran because of the cancer risk. He said there is a lower likelihood of the medicine working and bigger likelihood of a flare if she isnt within theraputic range. She is just so tiny for such a high dose. She is right at 40lbs, so 75mg seems like so much. He explained that her body is processing the drug well and thats why her level is low. Anyone go through this? Anyone want to ease my mind a little?
06-06-2017, 11:20 AM   #2
my little penguin
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Ds was only 50 lbs (age 7) when he was on 6-mp
We had the same issue his body was processing the med quickly and he was below therapeutic range .
Think of it like taking all the risks of the med but none of the benefit
Your cancer risk from imuran doesn't increase dramatically with a tiny bump in dosage
But the cancer risk from under treated inflammation is high

That said a lot of ped GI are switching from 6-mp/imuran to methotrexate instead due to the lymphoma risks associated with imuran /6-mp

So if that's your big concern you may want to ask about methotrexate
It can be oral or injection


Ds ended up switching from 6-mp to mtx since every time we increased the 6-mp to get therapeutic dose the med caused his liver enzymes to rise .

That was almost 7 years ago and he is currently taking humira and mtx

Good luck
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06-06-2017, 11:30 AM   #3
Farmwife
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Location: Michigan

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Hi, my Grace is on Imran and had been bumped a couple times with no side effects.
She's been these medicines since age 4, with no real side effects.
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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
06-06-2017, 01:48 PM   #4
Maya142
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My kiddo had to go up on the dose too. She went from 75 mg to 100 mg. She was older though and probably 90 lbs or so at the time.

I also worried about the cancer risk when she was on it. She could not tolerate Methotrexate (though most kids have no trouble with MTX) so we had to try Imuran. But MTX is safer, and I wish she could have stayed on it.

Our GI prefers using MTX to Imuran now. I'd ask about that.
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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
06-26-2017, 09:32 AM   #5
honey560buddy
 
Join Date: Jun 2017
Hi, my Grace is on Imran and had been bumped a couple times with no side effects.
She's been these medicines since age 4, with no real side effects.
We just got her 6-mp level back and its still a little low so now we are on 100mg started today. All of her other labs look perfect. Im so nervous because she is so small at 40lbs.
06-26-2017, 09:34 AM   #6
honey560buddy
 
Join Date: Jun 2017
My kiddo had to go up on the dose too. She went from 75 mg to 100 mg. She was older though and probably 90 lbs or so at the time.

I also worried about the cancer risk when she was on it. She could not tolerate Methotrexate (though most kids have no trouble with MTX) so we had to try Imuran. But MTX is safer, and I wish she could have stayed on it.

Our GI prefers using MTX to Imuran now. I'd ask about that.
We go back in September and I do plan on asking about MTX. She is doing so good since starting the Imuran a year ago. She has gained so much weight and has been in remission with no problems ever since. I hate to mess anything up, but I will ask.
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