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Crohn's Disease Forum » General IBD Discussion » Trying to decide prednisone or EEN for my teen


09-28-2017, 08:19 PM   #1
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Trying to decide prednisone or EEN for my teen

My 14 y old was Dx a year ago w Crohn's terminal ileum
Did EEN, methotrexate, and Humira every other week since 02/17 but loosing response to Humira. Calprotectin very high.
Debating prednisone 5 week treatment vs EEN to induce remission as we move to weekly humira vs Remicade.

Only symptoms had been joint pain and impaired growth, had some stomach pain. Has been feeling great and growing very well, no pain other than recent lower back/hip pain which started during soccer match but unable to run X 1 1/2 weeks d/t pain. Could be Crohn's related - we don't know.
Had some good catch up growth this past year on Humira & methotrexate.
Calprotectin > 1000 and he says "I don't get it" , "I feel fine"

We've been trying our best to avoid steroids up to now, given the only way he experienced the disease was via his inability to gain weight and grow in height. We didn't want steroids to further impair this symptom. He's been doing so much better, gaining 1/4 inch every 2 weeks - we don't want to stop this momentum.

He may be willing to try EEN again to induce remission but he's not sure.

Thoughts?

What can he expect as prednisone side effects on 5 weeks treatment course?

Thank you!
09-28-2017, 08:57 PM   #2
my little penguin
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We have a parents forum
You may get more answers there

http://www.crohnsforum.com/forumdisplay.php?f=49

The thing about steriods is they always say it's for x number of days or weeks
But it is very hard to stick to that
Ds is almost 14
Dx at age 7
He has done een three times
Very hard on the kiddo but very effective

That said given his joint pain
Especially lower back /hips tends to be Juvenile spondyloarthritis (JSpA)
You need a rheumo asap
Boys with Crohns and back /hip pain are very high risk for JSpA

Unfortunately een won't help inflammation for joints
Ds has JSpA which is flaring and has been on steriods since April
It was only supposed to be for a few weeks
We had to switch from humira every 5 days to Stelara
He got his first Stelara infusion 6 weeks ago
So waiting for that to take effect and slowly weaning now


Tagging Maya142
And clash
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09-28-2017, 09:29 PM   #3
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Very helpful - thank you!
Will make sure to follow up on joint pain no matter what treatment we go with. Good luck with your kiddo, I hope new med works!
09-28-2017, 09:47 PM   #4
Maya142
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I would try to get him to a pediatric rheumatologist as soon as you can. Like MLP said, it's possible his lower back and hip pain is juvenile spondyloarthritis. Both my girls have it (younger one also has IBD).

It is a type of juvenile idiopathic arthritis. Symptoms include morning stiffness, pain that gets better with movement and worse with rest (sleeping, sitting through class or a movie). Very often other joints are also involved - knees, ankles, hips and heels are very common. Sacroiliac joint involvement is also very common.

Like IBD, if he has juvenile spondyloarthritis or enthesitis related arthritis (different names for the same type of arthritis - it is also sometimes called IBD associated arthritis or enteropathic arthritis), it needs to be treated. Usually a biologic will treat it - Humira and Remicade are used most often since they would also treat the IBD.

Have they done Humira levels for your son? Often, if levels are low, increasing the frequency of the shot will work. On the other hand, if levels are fine and he has antibodies, then you probably want to try Remicade.

As for EEN vs. Pred - I would see a rheumatologist before you decide, if that is possible. Pred will help with the joint pain, EEN won't.

Inflammation in the joints can also impact growth and lead to damage in the joints, so it's important to get it checked out. My younger daughter has very severe arthritis and she has damage in her SI joints and hips and jaw. She will be having hip surgery later this month and jaw surgery in a couple months.

I don't mean to scare you, I just want to emphasize that if he does have arthritis, it needs to be treated.

In terms of steroid side effects - it depends on the dose. With higher doses you will have more side effects - a puffy round face, hunger, moodiness, insomnia, weight gain etc. But he will also feel a whole lot better - joint pain should get better.

With lower doses, he may have milder side effects.

We have a love hate relationship with pred - love how well it works but hate the side effects. It's tough, especially with a teenager. But EEN is tough too.

For weight gain, could you have him do supplemental EN (some shakes, but not all his calories) while he's on Prednisone? That should help with the weight gain piece at least.

Good luck with whatever you decide.
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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
09-28-2017, 09:58 PM   #5
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Thank you! Very helpful. We will follow up w rheumatologist. Already saw PCP on this and he wants an update bi mid-week next week. Our GI was hoping to get MRE to assess inflammation in intestin and joints at same time but we had issues w insurance.

Our son did great w Humira, gained 30 lbs in one year and more than 4 inches (close to 6 I think) overall during the year counting EEN period.

I'm not sure why we haven't discussed testing Humira levels prior to deciding whether to move to weekly Humira vs Remicade. Is this a test that comes back quickly?

Thank you!!!
09-28-2017, 10:06 PM   #6
Maya142
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Hmmm...to be honest, we have never done it. When my girls were first put on Humira, it wasn't available, so we just assumed the problem was too little Humira and went to weekly shots. It worked for both girls. My older daughter is still on Humira and MTX and is doing well.

We have done Remicade levels many times though - I think it takes about a week? I can't remember...

I'm going to tag some other parents who may know:
crohnsinct
my little penguin
Mehita
Jmrogers4
Pilgrim
Tesscorm
09-28-2017, 10:22 PM   #7
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OMG, this forum is so helpful! I am so grateful for these shared stories and pieces of information.

So glad to hear that one of your daughters responded well to increased dose frequency of Humira and am I understanding your other daughter responded well to Remicade after being exposed to other TNF?

May I ask how long before they had to switch to increased dose frequency and other med?

We have heard so many good stories of children (and adults) responding well to a TNF blocker for years, we are a little bit anxious to have to re-adjust care plan so early on. Hoping increased dose frequency on Humira or move to remicade will get our son into deep remission. He had such a good response the first 3 months.

Will ask our GI about trough levels.

Thank you!!!
09-29-2017, 02:16 PM   #8
Guerrero
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EEN much better, it is proven to be as effective for child than steroid without all the nasty side effects!

Prednisone could slow down his growth
09-29-2017, 03:06 PM   #9
Maya142
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May I ask how long before they had to switch to increased dose frequency and other med?
They were on every 10 days for 2 months or so and then went to every week. Once they were on weekly shots, the older one took about another two months to feel better and the younger one took a full 6 months to feel better (though she tends to respond slowly to everything).

Both responded to Remicade for a while too.

My older one has now been on Humira for about 5 years.
09-29-2017, 03:54 PM   #10
Jmrogers4
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Took about a week for remi level test for us. Sorry, no experience with Humira but we did have to do a fair amount of adjusting to get to the right frequency/amount of remicade.

My son is now 18 but started on remicade at 14 1/2. We had a similar story he felt good, really no symptoms other than lack of growth/weight gain. Standard dosing for remicade is 5ml/kg every 8 weeks after 3 loading doses. Didn't make it to 8 weeks the first time, scheduled 5ml/kg every 6 weeks. His appetite would drop off about a week or two before the next infusion so we upped the dose to 7.5ml/kg, same thing still happened but he was growing and he would gain weight then lose several pounds the week or 2 before infusion so we upped the dosage again to 10ml/kg every 6 weeks and this worked great had amazing growth and weight gain so we tried to move out to every 8 weeks, same thing would gain and then lose the couple of weeks before infusion so back to every 6 weeks and things were great then insurance decided he needed to get his infusions at an infusion center and would only approve 7.5ml/kg every 6 weeks. I was so angry thinking we were going to be back in the same boat but it's been nearly a year at that dosage and he is doing fantastic and my only guess is that he was finally in stable remission and that dosing is enough to keep him there.

I totally understand about not wanting to lose that growth momentum my son went from 5'1" to 6'1" since starting remicade. I agree wholeheartedly about seeing rheumo but I will say that once my son was in solid remission all his joint pain disappeared.
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Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
09-29-2017, 04:52 PM   #11
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Jacqui thanks for sharing, reading your post makes me so hopeful. Glad your son now doing well on Remicade and made it to 6'1! And the joint pain no longer issue.

We felt we had things "under control" since February as my son was feeling great and gaining and growing so well. It's not easy to have to reshuffle all the pieces of the puzzle again, and I'm in healthcare and we have a great doctor - so I am grateful, but it is more complex than I thought - and I find myself tiptoeing in making these big changes and exposing my son to certain meds (e.g. steroids) when symptoms wise nothing is manifesting itself as Crohns activity with certainty. Our doctor agreed to test Humira trough levels and insurance covering it so we will proceed. This will help us decided whether to stay on Humira or switch to Remicade. So grateful for our great care team and for this forum. Thanks a million for sharing and bringing light to my day.
09-29-2017, 09:12 PM   #12
my little penguin
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Fwiw
Ds started on remicade at age 8
Was in it for 8 months till he had two reactions
At which point he was switched to humira
He was on humira every other week for a year
Then added mtx (JSpA)
Then humira every 10 days for a year
Then every 7 days for a year
And last year every 5 days
Till he was stopped due to surgery (not ibd related )
When he restarted humira didn't work

So you can have a response to another anti tnf
09-29-2017, 09:25 PM   #13
Maya142
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So glad you have a plan.

My older daughter has responded to multiple anti-TNFs. She is doing great currently on Humira and MTX, but has also been on Simponi and Remicade. They both worked well until they stopped - we assumed she had built up antibodies.

My younger daughter is more complex - her arthritis does not respond to anti-TNFs but her Crohn's does. She has been on Humira, Remicade, Simponi and Cimzia and her Crohn's has done really well on ALL of them. However, her arthritis didn't respond well to ANY of them.

Arthritis associated with IBD can flare when the IBD flares or independently. If it flares when the IBD flares, then it's relatively easy to treat - you treat the IBD and the arthritis goes away.

However, if it flares independently, then it has to be treated independently. My younger daughter has had times when her arthritis is VERY active and her IBD is in remission (based on scopes) and has had time when her arthritis was not very active and her IBD was flaring, and there have been times when both have flared together.

CCFA has a good explanation of the types of Spondyloarthritis that are associated with Crohn's and which types flare when IBD flares and which types flare independently: http://www.crohnscolitisfoundation.o...plications.pdf

Generally, if the spine is involved (called axial spondyloarthritis) then the arthritis flares independently of the Crohn's.

I would still try to get your son to a ped. rheumatologist as soon as you can. Your GI should be able to refer you to one. There is often quite a wait to see one.
10-01-2017, 01:30 PM   #14
Tesscorm
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My son is on remicade. We have had levels tested and I think it took a week or two to get results. His GI did a levels test the morning of his first 8 week infusion (ie after loading doses), due to those results, his GI moved his infusions to every six weeks rather than 8 weeks.

He has been on remicade for ~4 years now.

My son had back pain prior to being diagnosed. We've never been able to determine if the back pain was referred intestinal pain (thus signalling crohns inflammation months before being diagosed) or if it was the advils he took for the pain that eventually triggered the crohns inflammation?? In either case, once he started EEN and went into remission (and stopped using advils), the back pain alleviated almost completely (because he continued to play hockey, injuries still happened...). But, his GI did refer him to a rheumatologist to check his back pain (no sign of arthritis).
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
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