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100mg imuran for a 13 year old boy. Suggestions please!!

Hi,

I'm back. Let me brief my son's journey so far. We are basically from India, living in United States from the last 7+ years.
My son was diagnosed with moderate-severe Crohn's disease in April'2015. His Crohn's disease was limited to several parts of the colon. No involvement of small intestine or other parts (confirmed with an MRE and endoscopy/colonoscopy). He had skin issues too, at the time of diagnosis. Dermatologist confirmed.., it was psoriasis. He had no complications though. He was admitted and started a course of steroids. Nothing worked and doctor finally put him on Remicade in Oct'15 (as a monotherapy). After 2 loading doses of remicade, he had C-diff and doctor had to hold the 3rd dose of Remicade. Then, he took remicade till May'2016, but looks like his remicade levels were very low and he started reacting during infusions.
He even got Mono in May'2016 and July'2016 was his last dose of Remicade. The doctor found he developed antibodies. Though the antibodies weren't that high, the doctor didn't want him to start on high dose of remicade, because of his reactions (during infusions!).

I was pregnant with second one then and asked doctor to start entocort as a bridge until we start Humira. My son was almost 10 by then. He did very good on entocort and he was on it for almost 9 months (until April 2017, with reduced doses though). Meantime, we started 50mg imuran and my son did great. He did get c-diff 2 more times during this time though, because of antibiotic use!!

Everything was going very well. However, doctor did a imuran therapeutic level check in Aug'2018 and informed us that his levels are low. He needs more Imuran as he's metabolizing it too soon. We asked him to wait as he was doing so good. My son did great till Nov'2018. His labs were fine, no symptoms. His symptoms became suddenly bad over the next 2 months and he stopped eating. He started throwing up (a little blood at the end!, scary!!), and we admitted him to the hospital in Jan'2019. His fecal calprotectin was 1800 then. A colonoscopy and endoscopy was done (he colon looked clean except for very few ulcers and a little active disease). But, his duodenum had inflammation. We didn't get the MRE as the course of treatment would remain the same. He was started on 9mg entocort (because he did pretty well on that last time!). His Imuran was increased to 75mg. He did great for the first 2 months when he was on 9mg entocort. His fecal calprotectin came down to 300's. Once they reduced the budesonide, his symptoms came back. Short and intense cramping, loose stools. We went to India for a vacation for a month. His food was all over the place. Last week, we got his fec calprotectin. It's 1800 again. His CRP and ESR is elevated. His Imuran levels are still not therapeutic. So, doctor put him on prednisone (40mg) from last week and wants him to start on 100mg Imuran. My son will be 13 soon and I am scared to give him that high dose. But, on the other hand, he did so well with that medicine that I do not want stop it too. I am worried about the big C warning for young male adults.

We go to Children's hospital in Michigan, Detroit. His GI doctor gives very conservative treatment and he is not aggressive. He knows that I am in this forum and I have a lot of knowledge about medication and disease (all thanks to this group!!). I haven't started him on 100mg imuran though.

Now the options I have are.
1. Start him on 100mg Imuran as suggested by doctor. I would be happy to hear from mom's of teen boys, young adult male taking this medicine without any problems.
2. Ask the doctor to switch to Humira and stop Imuran. He'll do it if I ask, but he will not take the initiative to start it.
3. Change the doctor and look for a doctor who is up to date with the treatment and disease.

I like my son's GI. He always answers our calls/concerns, calls back immediately if the blood or stool numbers are not right. Sends the medication/scripts on time without fail, accommodates his schedule to see my son. But, the only thing is.., he is not up to date with the disease and the medication. It is like, I ask him to give this and he gives or else nope!!

I need your suggestions please. I'm torn between the decisions. My husband doesn't know about the disease either. All he says is.., let's do the way you want!!
I need your expert advice again. Pretty please...

PS:
1. I'm also thinking of taking a second opinion from Boston's Children's Hospital. I see that they provide a online second opinion for 675 dollars (insurance not accepted). The opinion will be given in 7 days. Has anyone used that facility?
or
2. Should I switch to CS Motts Children's Hospital in Ann Arbor? Anyone from this group going there?
 
Momof8yrold - it sounds to me that another biologic would be the best thing for your son. He may have reacted to Remicade but he may very well do well on Humira or Stelara. I am not from the U.S. but there are many parents on this forum who probably reach out to you shortly with some good suggestions on all fronts.
 

my little penguin

Moderator
Staff member
So for male or females imuran and 6-mp are no longer used due to high lymphoma risks (they did use them about 9 years ago for ds but studies have found it’s not the best treatment course for the risk )

The second risk is for T cell lymphoma that’s when imuran /6-mp are combine with a biologic
It can be when you have taken 6-mp in the past
But us much higher when the two are taken together
The risk is not the same when biologicssabd mtx are combined

Ds was on 6-months for 8 months at dx
His levels were also too low after raising the dose levels went up but so did liver enzymes
Added allopurinol
Liver got better -levels went down

Remember the goal of meds is complete mucosal healing
That means a completely clean scope
No inflammation seen no ulcers nothing
Just nice pink healthy intestine

When Ds was on 6-mp mild inflammation
Was found
Remicade clean and pink
Humira clean and pink
Stelara inflammation found so we raised the dose


Definitely get a second opinion
Your Gi should listen to you
But they should be doing the driving
While getting your input

My kiddo did great on humira after reacting to remicade
No issues for over 5 years


Good luck
 
I would get a second opinion. Questions I would ask

- what are the risks? Real percentages.
- do risks increase with dose or length of use? For some drugs the risks are the same whether you were on the drug for a short time or long and also some risks don't increase with dose increase
- the duodenum is notoriously hard to treAt. Success rate of aza for that area specifically. Humira? Stelara?

Personally I would lean toward humira or Stelara. Few reasons. Overall it has a much better success rate. Lower risks. He is hitting puberty soon and you really want to control disease to capitalize on growth. Also the sooner you control disease the more likely it is that you can change the course of disease.

Continued use of aza in my opinion is not conservative.

Sorry you are having to deal with all of this and manage the GI also. I totally get all the pros of this doc though. It is hard to give that up.
 
Thank you all for your valuable time and feedback. We are meeting his GI on Monday. We will talk to him about the second opinion.
Meantime, we have already decided to take the online second opinion from Boston Children's Hospital.
Based on the opinions we get from the Boston Clinic, we will move forward.
Also, during our meet on Monday, I'll ask my son's GI to check with other doctor's too (they are a group of 5 GI specialists there).

Will keep you guys posted!!
 
We met our son's GI yesterday. I told him that, we are not in favor of increasing his Imuran and we also told him about getting a second opinion. He did encourage us to go ahead and get a second opinion. The GI asked us to start him on Humira as soon as possible. The doctor wants my son to be on Humira + Imuran for 6 months and then take him off Imuran. The doctor said, the nurses will work on the insurance approval and we will be updated once the insurance approves Humira. The doc said, the exact dosage and the frequency of Humira will be decided later.
 

my little penguin

Moderator
Staff member
Glad you gave a decision
Humira has a kiddie dose and “adult “ dose this is based on weight only
Most kids need the “adult “ dose of 40 mg
Frequency
Standard is every 14 days to start
Some find they need
Every 10 days ,every 7 days
Max frequency is every 5 days
Dosage is never higher than 40 mg except for loading doses(then it’s multiple injections at once )

Ds was on the “adult “ dose at age 9
Till age 14 when it stopped working

Good luck with the humira and second opinion
Any questions let me know Ds was onnit a long time
Great med
 

my little penguin

Moderator
Staff member
Pediatric Crohn’s Disease
The recommended HUMIRA dose regimen for pediatric patients 6 years of age and older with Crohn’s disease (CD) is based on body weight as shown below:

Pediatric PatientsInduction DoseMaintenance Dose
Starting at Week 4
(Day 29)
17 kg (37 lbs) to < 40
kg (88 lbs)
  • 80 mg initially on Day 1; and
  • 40 mg two weeks later (Day 15)
  • 20 mg every other week
≥ 40 kg (88 lbs)
  • 160 mg initially on Day 1 (given in one day or
    split over two consecutive days); and
  • 80 mg two weeks later (Day 15)
  • 40 mg every other week

From

 

Maya142

Moderator
Staff member
I agree with everything said above - pediatric GIs are now trying to avoid Imuran and 6MP, especially for adolescent boys. Our GI did put my daughter on Imuran, but only because she had failed Methotrexate (which is safer than Imuran) and she could not be on a biologic for her Crohn's (she has severe arthritis and after failing all the anti-TNFs, we switched to a biologic that would work for the arthritis but not for the Crohn's. She had severe, aggressive arthritis and mild Crohn's, so we felt the switch was needed and the risk of going from an anti-TNF to Imuran was worth it).

She had the same issues with Imuran as your son - we could not get her up to therapeutic levels. We had to up the dose but still could not get to therapeutic levels without it affecting her liver enzymes. So then we added Allopurinol and got her to therapeutic levels. Then Imuran worked but she got infection after infection, which is not her norm. She usually gets one cold a year and that is it. But that year, she was on antibiotics 6-7 times.

We finally stopped Imuran when she got a throat infection requiring antibiotics which led to C.Diff. At that point her GI said Imuran was causing too many infections. I mention this because you said your son has had C.Diff multiple times from antibiotics. Once we stopped the Imuran, infections stopped and no need for antibiotics.

At that point we actually had to add a second biologic for her Crohn's. She is on Cimzia, which is an anti-TNF. So now she is on two biologics and an immunomodulator. Even on the 2 biologics, she does not get infections like she got on Imuran!!

All this to say that of all the medications my daughter has been on, Imuran was the scariest!!

A biologic sounds like a good decision. I'm honestly surprised your GI went from Remicade to Imuran - that's sort of going backwards in terms of efficacy.

The advantage with Humira is that it works faster than Stelara. If you search the forum, you will find lots of threads about how much Humira hurts and burns. It used to but the preservative that caused that horrible burning (citric acid/citrate) was removed recently and now most kids say it barely hurts at all.

Typically with Humira, you start with 40 mg every 2 weeks (if your son is over 66 lbs, which I assume he is), after the loading doses are done. My daughter was 12 and about 80-85 lbs and she started on 40 mg every other week.

Good luck!!
 
I agree with everything said above - pediatric GIs are now trying to avoid Imuran and 6MP, especially for adolescent boys. Our GI did put my daughter on Imuran, but only because she had failed Methotrexate (which is safer than Imuran) and she could not be on a biologic for her Crohn's (she has severe arthritis and after failing all the anti-TNFs, we switched to a biologic that would work for the arthritis but not for the Crohn's. She had severe, aggressive arthritis and mild Crohn's, so we felt the switch was needed and the risk of going from an anti-TNF to Imuran was worth it).

She had the same issues with Imuran as your son - we could not get her up to therapeutic levels. We had to up the dose but still could not get to therapeutic levels without it affecting her liver enzymes. So then we added Allopurinol and got her to therapeutic levels. Then Imuran worked but she got infection after infection, which is not her norm. She usually gets one cold a year and that is it. But that year, she was on antibiotics 6-7 times.

We finally stopped Imuran when she got a throat infection requiring antibiotics which led to C.Diff. At that point her GI said Imuran was causing too many infections. I mention this because you said your son has had C.Diff multiple times from antibiotics. Once we stopped the Imuran, infections stopped and no need for antibiotics.

At that point we actually had to add a second biologic for her Crohn's. She is on Cimzia, which is an anti-TNF. So now she is on two biologics and an immunomodulator. Even on the 2 biologics, she does not get infections like she got on Imuran!!

All this to say that of all the medications my daughter has been on, Imuran was the scariest!!

A biologic sounds like a good decision. I'm honestly surprised your GI went from Remicade to Imuran - that's sort of going backwards in terms of efficacy.

The advantage with Humira is that it works faster than Stelara. If you search the forum, you will find lots of threads about how much Humira hurts and burns. It used to but the preservative that caused that horrible burning (citric acid/citrate) was removed recently and now most kids say it barely hurts at all.

Typically with Humira, you start with 40 mg every 2 weeks (if your son is over 66 lbs, which I assume he is), after the loading doses are done. My daughter was 12 and about 80-85 lbs and she started on 40 mg every other week.

Good luck!!
My son did not catch any infection when he was on Imuran. He felt his best with that drug. The antibiotic use was before he started Imuran. He fell sick many times when he was on Remicade and got C-diff too. But, none with Imuran.
 
My son is 92 lbs and 4 ft 10 inches. He is the shortest in his class. He will start 8th grade soon. Thank you for all your responses. We had his PPD test today (because of our recent travel to India), will need to wait for 48 hours for the result.
 

my little penguin

Moderator
Staff member
Because your child is immunosuppressed
They typically recommend the quantiferion gold blood test since it has a control
That said once you have a ppd skin test they can’t do the blood test for 6-8 weeks
 

Maya142

Moderator
Staff member
My son did not catch any infection when he was on Imuran. He felt his best with that drug. The antibiotic use was before he started Imuran. He fell sick many times when he was on Remicade and got C-diff too.
I'm sorry, I misread that!!

You mentioned your son is the shortest in his class. Since some kiddos with IBD (especially in the small bowel) have growth issues, has his bone age ever been checked? Is he growing and gaining weight normally? If not, then I would consider formula. It does not have to be EEN - many kids use it to supplement their diet. Some kids drink and some use an NG tube. Formula helps a lot when a kiddo is very inflamed and cannot absorb regular foods. There are 3 types - polymeric, semi-elemental and elemental. Polymeric formulas are the most palatable but can be hard to tolerate, for a kiddo who is very inflamed. Some kids do fine on them, others need easier to absorb formula. Boost, Ensure and Pediasure are examples of polymeric formulas.

Semi-elemental formulas are more broken down and easier to digest than polymeric formulas, but are less palatable. Some kids are able to drink them with no problems, and others have to be coaxed (or bribed!). Others need feeding tubes.

My daughter absolutely hated them at first but over time, got used to drinking them. She wasn't able to drink enough to maintain her weight, much less gain, so we did have to go to a feeding tube, so she could do overnight feeds. She'd put in the NG tube about 2- 3 hours after dinner, did the feed overnight and would pull out the tube in the morning - no one at school had to know!. That really helped - she had been severely underweight and getting good nutrition made a huge difference. Many GIs like to use semi-elemental formulas for IBD patients - Peptamen Jr and Pediasure Peptide are commonly used.

Finally, there are elemental formulas, which are very broken down - into amino acids. They tend to taste pretty awful and feeding tubes are often needed for kids who need elemental formula. My daughter tried to drink some and said they tasted like stinky feet. Most kiddos don't need elemental formula but some do.

Wanted to add - supplemental EN is used in addition to meds, not in place of them, and can really help kids with IBD grow and gain normally. Worth exploring at the very least. My daughter was severely underweight and malnourished and it really helped her.
 
Last edited:

my little penguin

Moderator
Staff member
One other thing given his height /weight
Have they had him monitored by Endo
Sometimes crohns causes issues with growth
But other times it’s other stuff

Adding in shakes (any kind ensure , slim fast , carnation instant breakfast etc..) are easily absorbed calories and help crohns kids with growth
 

my little penguin

Moderator
Staff member
Ds was on peptamen jr from age 7-12 as extra calories was switched to Neocate jr (amino acid based ) from 12-15 he drinks his orally so is the exception
 
Because your child is immunosuppressed
They typically recommend the quantiferion gold blood test since it has a control
That said once you have a ppd skin test they can’t do the blood test for 6-8 weeks
My son's quantiferon gold test comes as indeterminate because of his BCG vaccine. He got that blood test done last week. Most Indians born in India get BCG vaccine. Hence, his GI does both the blood and the PPD test.
 
My son drinks pediasure as elemental formula. He is drinking it since his diagnosis. About 50% of his calories come from Pediasure. He will soon transition to Boost or something else. He has no problems drinking it. We did meet the Endo couple of years back and she didn't seem to be bothered. Looks like, we should meet her again.
 

my little penguin

Moderator
Staff member
I thought I read that if you got the bcg vaccine you couldn’t get a ppd test since it would be positive
Only the blood test was valid

Many people born outside of the United States have been given a vaccine called BCG.

People who were previously vaccinated with BCG may receive a TB skin test to test for TB infection. Vaccination with BCG may cause a false positive reaction to a TB skin test. A positive reaction to a TB skin test may be due to the BCG vaccine itself or due to infection with TB bacteria.

TB blood tests (IGRAs), unlike the TB skin test, are not affected by prior BCG vaccination and are not expected to give a false-positive result in people who have received BCG. TB blood tests are the preferred method of TB testing for people who have received the BCG vaccine.

From
 

my little penguin

Moderator
Staff member
@momof8yrold
Pediasure is a polymeric formula (meaning completely intact proteins like whole food )
Boost is similar for adults

Elemental formula would be with no intact proteins such as Neocate jr or elecare

When it comes to supplemental nutrition any shakes (slimfast carnation pediasure etc ) are all a good thing

Puberty is when fast growth occurs so Endo is important to see before growth window closes

I can say
One kiddo without ibd was only 5’1” at the end of 8th grade
Now in 11th grade is over 5’11

My Ds was 5’2” at the beginning of 8th grade
And now in 10th grade at 5’9” so some do just grow later
Remember small bones grow before long
So feet and hands grow first
When you have to buy new shoes every three months
Growth spurt to follow
As well as “mom I am hungry “ starts after dinner
 
I thought I read that if you got the bcg vaccine you couldn’t get a ppd test since it would be positive
Only the blood test was valid




From
But for my son, it's always reverse. His PPD test comes negative and blood test as "indeterminate". And his GI is not American. He has got a BCG vaccine too and he gets PPD test every time, he comes back from his home country. The doctor's blood test comes as " indeterminate" too :)
 
@momof8yrold
Pediasure is a polymeric formula (meaning completely intact proteins like whole food )
Boost is similar for adults

Elemental formula would be with no intact proteins such as Neocate jr or elecare

When it comes to supplemental nutrition any shakes (slimfast carnation pediasure etc ) are all a good thing

Puberty is when fast growth occurs so Endo is important to see before growth window closes

I can say
One kiddo without ibd was only 5’1” at the end of 8th grade
Now in 11th grade is over 5’11

My Ds was 5’2” at the beginning of 8th grade
And now in 10th grade at 5’9” so some do just grow later
Remember small bones grow before long
So feet and hands grow first
When you have to buy new shoes every three months
Growth spurt to follow
As well as “mom I am hungry “ starts after dinner
My mom-in-law tells the same thing to my son all the time. She says.., your dad was so tiny when he started his 8th Grade. He started growing when he was 14 or so.., but this kid feels so bad for his height. We will ask for an appointment with endo soon. Just to be sure. Your inputs are very encouraging. Thank you. I'll show this to him :)

Only his colon was involved when he was diagnosed(They did colonoscopy, endoscopy and MRE). But, now looks like.., his small bowel is involved too. Because the recent endoscopy showed inflammation in duodenum. We did not get a follow up MRE though. Do you think, I should ask about elemental formula?
 
My son was very tiny when he was at the end of grade 8 going into grade 9. He was 5 feet and only 85 lbs. Some boys bloom a little later - he caught up with his friends a few years later. He is a young adult now at 5'8" and 132 lbs (and still gaining thanks to treatment). He wasn't diagnosed with crohn's until last year but I suspect he started in his early teens. Your son's BMI is within normal range. Although it is always good to check things out, I'm sure he will catch up with his friends soon. I was only 5 feet tall and 96 lbs when I started high school (I'm a female though) but was the smallest entering high school but by the end of high school Iwas 5'5" (taller than my friends that were so much taller than me when I started high school).
 

Maya142

Moderator
Staff member
My son's quantiferon gold test comes as indeterminate because of his BCG vaccine. He got that blood test done last week. Most Indians born in India get BCG vaccine. Hence, his GI does both the blood and the PPD test.
We were told the exact opposite (what my little penguin said above) - that the blood test needs to be used if the patient has had the BCG vaccine.

We lived in the India when my girls were young. Both got the BCG vaccine. Because of that, they both have positive PPD results. We saw multiple infectious disease doctors who all agreed it was from the BCG vaccine and said to use the Quantiferon Gold test (the blood test) and so we have always used that and both girls are always negative. They were both required to have it prior to starting biologics and now we do it every so often - definitely after any trip to India. We also did chest x-rays just to be sure, before starting biologics.
 

Maya142

Moderator
Staff member
My mom-in-law tells the same thing to my son all the time. She says.., your dad was so tiny when he started his 8th Grade. He started growing when he was 14 or so.., but this kid feels so bad for his height. We will ask for an appointment with endo soon. Just to be sure. Your inputs are very encouraging. Thank you. I'll show this to him
She's right - some boys do grow later. My nephew was 5'1 or 5'2 at the end of 8th grade. He was the shortest among his friends and hated it - was very self-conscious and got teased 😢 . By the time he graduated, he was 5'8 and still growing. He does not have Crohn's though - just a late bloomer.

It's great that he is drinking Pediasure!! Is he gaining weight or is he sort of stuck around 92 lbs? I'm just wondering if he needs a more broken down formula - a semi-elemental formula is easier to digest and given the inflammation in his duodenum, it may really make a difference in terms of weight gain, because it's possible he is just not absorbing the polymeric formula (Pediasure), which is has whole proteins.

Peptamen Jr. and Pediasure Peptide are semi-elemental formulas and have broken down proteins. They are more difficult to drink because they are less palatable. But kids do get used to them.

I would agree that you should see an endocrinologist, because the window for growth can be small and it's better to see one earlier rather than later.
 
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