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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.
 
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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.
 
Update on my son:
Humira is approved from the insurance. Our doctor has recommended pediatric dose for my son. My son is a little over 40 kgs and our doctor wants to start with lower dose. Our doctor (as usual) doesn't want to pump unnecessary medicines. If lower dose doesn't seem to work, we can increase the dose is his recommendation. Going little and then increasing is his strategy. I'm not sure how to go about it. His GI did the same thing with Remicade and I believe that was the reason why my son built antibodies to that medicine so quickly. His Remicade levels were NIL by 5 weeks and still we did not increase his Remicade levels. I'm really really scared on that. But, my son's GI doesn't believe in my theory.

Meantime, we have started the online second opinion process from Boston Children Hospital. They might need 3 weeks for their opinion. The nurse from Boston called up and I told her that, we are waiting a response from you to start the medication. She however thinks, we should start it and not wait.

My son started tapering prednisone from today. His labs came back normal (ESR & CRP). He feels great too. But, we all know this is temporary.

I am still in a dilemma whether to start pediatric dose of Humira for him from next week or wait for the second opinion results. What are your inputs? Did anyone use pediatric dose Humira for 42 kgs kiddo?
 

my little penguin

Moderator
Staff member
Short answer no Ds was below the crohns weight for adult dosing at the time (but almost past it )
So we did 3 months of pediatric dose for nothing
Then upped it

The humira box has weight ranges for a reason
To be effective you need to be under a certain weight



This is straight from the humira company
So at 92 lbs
More than over the minimum weight

We were told under dosing is taking all of the risk of a biologic but none of the benefit

Have you showed the Gi the humira standard website ?????

I am all for lowest effective dose
But humira company did trials and theses were the weights they deemed a dose increase was needed

This is not humira 40 mg every 5 days
But standard pediatric dose recommendation for crohns patients above 87 lbs
 
Update:
I called the doctor 2 times to convince him for the dosage recommended by the Humira site. He did not seem to get convinced and finally, ased me.., what do you want me to order him. I firmly said.., whatever the Humira site recommends. He took a deep sigh and said.., as you say. I wonder how hard, it'll be for me to convince the doctor to make a switch from Imuran to MTX. I'm not in favor of combining Imuran with Humira. I'm just hoping the second opinion from Boston comes before we start him on Humira.

I worry sometimes, am I taking a wrong decision? Should I go with the doctor and not become over smart. But, the other mind says.., he's my son. I should do what is good for him. So, tough to deal this situation.

To add on to it, the prednisone is making my son.., "not listen to his parents" . He went on to play soccer and fractured his right wrist. Grrr., as if he needed more doctor visits and more absences from school. Running to a pediatric orthopedic today.

How long does Humira take to work? We started tapering his Prednisone this week and I'll check with the doctor about keeping a minimal dose until Humira kicks in.
 
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I think you did the right thing to push for the higher dose--sorry that you got so much pushback from your doctor. And really sorry to hear about the fractured wrist. Ugh!
 
I am guessing Boston's opinion will be to switch to MTX based on what they told another mom here recently. The thing is, if you change too many things at once, you won't know what is really helping. So I "might" stick with the Imuran for a little bit and wait to see what happens. Whether Humor kicks in or not, I would eventually switch over to Mtx because of the risks with Imuran.

Has he had his bone density tested? Kids with Crohn's are known for having low bone density and thus more prone to fractures, breaks etc. Not saying that this is why he got the fracture...kids will be kids after all and I have friends who have non IBD boys and they are always in the ER for breaks and sprains and such. Just a good thing to check out, especially given he has this fracture now.

I agree with you on pushing for the dose that Abbvie recommends. It is beyond me why a doc would use less. I also think that he should be on some level of prednisone or EEN until Humor has built to a therapeutic level and can take over the entire disease burden.
 
Couple of questions..,
1. How risky is it to start Humira as a monotherapy and then add in MTX after couple of months? I do not want to give Imuran and Humira together. Trying to avoid it as much as possible.
2. My son's GI suggestion is to give Imuran and Humira together for 6 months only and then stop Imuran. Is it reasonable?

We have got the approval for the new dose of Humira and he might start it from next week.
 

my little penguin

Moderator
Staff member
So the issue is once you have reacted to one drug
The odds of building antibodies to another drug is higher then say an average kiddo on monotherapy
That said Ds reacted to remicade twice While on monotherapy
And then switched to monotherapy humira
No reaction
Only added mtx after a year due to juvenile arthritis
He did lose response to humira
Every year dose frequency had to be increased
Until it just plain stopped working
We did have to have him stop humira a few times due to adenovirus/non ibd surgery
The last stop was non ibd related surgery for 6/8 weeks
Which resulted in humira not working

None of Ds docs would use imuran or 6-mp woth a biologic
Especially not young males
We asked more than once
Only mtx

Will add Ds never had antibody testing for humira
Wasn’t available at first
 
Finally my son started loading doses of Humira (adult dose) this week. He is still on 20mg prednisone and 75mg Imuran. The plan is to stop Imuran in the next 6 months.

Meantime, we also got the second opinion from Boston Children's Hospital. They are recommending us to get a in-person second opinion from a IBD specialist center like CS Mott (Ann Arbor). Boston Clinic is not sure how experienced is the pathologist from the current hospital that we are seeing. Also, Boston Clinic is doubting on the diagnosis. They are not sure whether it is Crohn's or Colitis. I'm not very satisfied by the second opinion.

I called Boston Clinic and told them that, we did go to CS Mott, had another set of eyes, read the colonoscopy slides.., and they also concluded that my son has Crohn's disease. I'm feeling that we wasted the money for nothing!

Meantime, I'm very very scared of giving Imuran with Humira.., but at the same time, I do not want to add 2 new medicines. My son is kind of stable now..
No tummy aches, no loose stools, no blood.., thanks to Prednisone. The plan is to taper the prednisone by the end of this month.

I just hope that the Humira kicks in the earliest and we stop the Imuran. I'm having anxiety about this all the time now...
 
My son has been on azathioprine for 2.5 years now. I cried and cried and cried when I first read the warnings. I totally understand where you are coming from. My son is 18 now and 180 pounds at 6 foot 3 inches. He is on 150 mg of Imuran and I worry every day. My son is back in a flare so he doctor has added sulfasalizine (due to cost). I hate that our kids have to take such powerful, scary medicine. I just pray that I am not making a huge mistake by allowing my son to be on Imuran. I am so sorry that your son is going through this. As parents, we want the best for our kids. I hope he gets healthy very soon (my kid too!). To answer your question, he has done well on the drug and gained 30 pounds (no height as he was already tall). No side affects that we are aware of. It just took a year for it to work. My son was in remission for a little over a year and started another flare this summer.
 

Maya142

Moderator
Staff member
Meantime, I'm very very scared of giving Imuran with Humira.., but at the same time, I do not want to add 2 new medicines. My son is kind of stable now..
No tummy aches, no loose stools, no blood.., thanks to Prednisone. The plan is to taper the prednisone by the end of this month.
@momof8yrold The side effects and risks associated with Imuran do increase as the amount of time on Imuran increases. So staying on it for 6 months and then dropping it is unlikely to make a huge difference. If however, he flares when you stop Imuran, I would add MTX then since it's safer.

@sgholmes2002 I'm so glad to hear your son is doing better!! Remind me, does he have Crohn's or UC? Because Sulfasalazine is one of the 5 ASA drugs and while it may work well in UC, it may not do much for Crohn's. You've probably heard this before, but it's said to be like aspirin for a brain tumor - it won't hurt, but it won't do a whole lot.

If it doesn't help, I would use that opportunity to get him off Imuran and either try MTX or a biologic. I know changing drugs is scary but if he's flaring, then it's probably necessary. There is a great video on Youtube of Dr. Baldassano, who heads the pediatric IBD clinic at CHOP and actually has pediatric onset IBD himself and was on Imuran/6MP for years, talking about the risks and benefits associated with Imuran and whether it should still be used for pediatric IBD. I'll try and find it.
 
@momof8yrold The side effects and risks associated with Imuran do increase as the amount of time on Imuran increases. So staying on it for 6 months and then dropping it is unlikely to make a huge difference. If however, he flares when you stop Imuran, I would add MTX then since it's safer.
Thanks a lot Maya142 for your comforting words. My son is on Imuran from the last 2.8 months. Hoping to stop it soon. Imuran was a wonder drug for him, while it worked!

Update: My son completed loading doses of Humira and will start his maintenance dose from next week. No side effects for now (knock on wood!). He is doing good and I'm praying God that he stays that way for the rest of his life. His tummy aches, nausea, diarrhea, feeling full after eating very little have reduced and he's eating so so much. I do not know what to feed him next. He's hungry every other hour and takes a big portion of food.., He is tapering his prednisone to 5mg this week and it'll be gone in the next 10 days or so. That's a great news for us.
Hopefully, he'll start growing soon (that's his major concern!). He's 4 ft 10 inches from the last 1 year or more. Not a single inch of growth!

Thanks all ladies for your continuous support.
 

my little penguin

Moderator
Staff member
Hungry is good
Weight tends to pile on prior to growth
Both my kiddos gained 20-40 lbs each
Within months
Then grew 7-9 inches within a year
Around 13-15
So have snacks handy (meals of chicken breast strips veggies /rice and wraps ) they can through together when they are hungry 5 minutes after they ate ;)
 
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