Crohn's Disease Forum » Parents of Kids with IBD » Sequence of Medications


11-05-2018, 06:56 PM   #1
OrlaRi
 
Join Date: Aug 2018
Location: Mullingar, Ireland
Sequence of Medications

Hi,

My 7 year old is very recently diagnosed. She did 8 wks of EEN & then moved on to 25mgs of 6MP daily. After 10 days she had very bad side effects, vomiting, diahoerra, sweating, fast shallow breathing. We re-trialed it 4 days later & she woke up vomiting within 6 hours of the dose. I now know what ďintolerantĒ to a drug means!

So what would any of you recommend for her to trial next? Iíd like to try the lesser meds first. She is not fond of needles 😬 She apparently has mild to moderate Crohnís but I know that can change at any time. Her bloods & CRP are normal at present as on partial EEN & low residue diet.

Weíll take the GIs advice but heís away on holidays so would just like guidance as to what he might recommend so Iíve researched the drug first.

Thanks,

Aoife
11-05-2018, 07:33 PM   #2
my little penguin
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Join Date: Apr 2012

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Ds was dx at age 7
Did een with 6-mp (8 months)
Then methotrexate (mtx) -3-4 months
Then remicade (8 months )Then humira(1 year )
Later added mtx -so humira plus mtx(4-5 years )
Now Stelara plus methotrexate for over a year
Partial een since age 7 btw
He is almost 15 now

The next lower level
Immunosuppressants would be mtx
It can be oral or injection
Ds canít handle mtx injection
Makes him very ill
Pills he is ok with

After immunosuppressants are biologics

Everyone is different
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DS - -Crohn's -Stelara -mtx
11-06-2018, 10:54 AM   #3
Maya142
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Usually MTX is next if she is going to be on an immunosuppressant. After that, typically biologics, Remicade and Humira.

We went straight to Remicade + MTX after diagnosis. Every kiddo is different though. In the US, it seems like they are more willing to jump to biologics quickly.

Of all the immunosuppressants we tried, Imuran (which is the sister drug of 6MP) was the hardest to tolerate for my daughter. She got infection after infection. We were happy to switch!
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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
11-06-2018, 10:57 AM   #4
Maya142
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Wanted to add MTX can be a pill or a shot. The shot has a tiny thin needle and according to my daughters, is basically painless. Many GIs use the shot if they're using MTX for therapeutic purposes and the pill if it's just a low dose to prevent antibodies to a biologic.

In the juvenile arthritis world, the MTX shot is used as a first line drug, and I have known kids as young as 4 or 5 to give it to themselves! It really is much easier than you'd expect.
11-10-2018, 03:25 AM   #5
OrlaRi
 
Join Date: Aug 2018
Location: Mullingar, Ireland
Thanks so much for your replies. Itís great to hear the needles are very small. The CNS told us that all Dub-cutaneous needle sizes are the same & thereís no paediatric size. I was dubious but Iíll wait & see. Thereís a company (who manufacture the drug), who will come to our house to teach us how itís done. Fingers crossed it will work.

Regards,

Aoife
11-10-2018, 10:01 AM   #6
Maya142
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Hmmmm...there are two companies that make autoinjectors of MTX and those would be the ones where you generally can't control needle size. Those are like pens - you press a button and it injects. Some kids hate them and some kids like them because you can't see the needle.

We never used the MTX autoinjectors. We just drew it up into an insulin syringe with a tiny thin needle. That is what didn't hurt according to my daughters.

I would be worth looking up the two auto-injectors - Rasuvo and Otrexup websites to see if that's what you're getting.
11-12-2018, 06:02 AM   #7
RobShamrock
 
Join Date: Nov 2017
Location: Limerick, Ireland
This is the auto injector you'll most likely be prescribed where we are Aoife
http://www.testsitepro.nordimet.ie/intro.html

there is another one, I might have a photo on my phone they wanted us to change to (pharmacy) but specialist said No, stick with whats been working
11-12-2018, 06:07 AM   #8
RobShamrock
 
Join Date: Nov 2017
Location: Limerick, Ireland
https://www.accord-healthcare.com/ie...l-methotrexate

this is the other one, much larger diameter base on the bottom of the pen
11-12-2018, 10:44 AM   #9
Maya142
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I'm surprised they go straight to prescribing auto-injectors. Here (in the US) you get a vial of MTX and then draw it up with an insulin syringe. The auto-injectors are more expensive, so insurance companies sometimes refuse to pay for them.

Anyway, if the auto-injector hurts a lot, then I'd definitely ask if you can do it with an insulin syringe - it has a tiny thin needle and according to my daughters, it doesn't hurt at all.
11-12-2018, 11:00 AM   #10
my little penguin
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Second that
We did the vial and tiny needle for months
Ds just does better with tablets than injectable mtx due to side effects
11-12-2018, 12:47 PM   #11
Maya142
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Some kids do better with tablets and others with injections. Typically, doctors say the injection is better because you don't have to worry about it not being absorbed due to GI issues (which is why most GIs use the injection if MTX is being used to control the disease).

Doctors will also often say that the injection causes fewer side effects - kids complain of nausea less etc. But actually studies don't really show a big difference in terms of side effects.

So it really is individual - my daughters did better on the injections (less nausea) but there are most definitely kids who have fewer side effects using the MTX pills. Increasing folic acid also will help with side effects and Zofran is used for nausea if necessary.

But many kids have no side effects at all with MTX. My older daughter has been on it for years - no side effects besides some fatigue. She does the injection on a Saturday night so she can rest on Sunday.
11-14-2018, 04:27 AM   #12
RobShamrock
 
Join Date: Nov 2017
Location: Limerick, Ireland
My son is a non tablet kinda of guy, well able to swallow food, give him a pill, like asking him to swallow a balloon
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