Looking for advice

[Cmp213]

Good afternoon all,

So I posted awhile ago that my son was diagnosed with crohns. He's 12 going on 13 and has been on pentasa 500 MG and Beudesonide 3mg since 2022. Well fast forward to this February he has had a massive flare up with no resolution after being on prednisone and metronidazole. He now needs an iron infusion and his labs are awful. Wbc up, hemoglobin is 7. Today we saw a different doctor that Gave me 2 options for a more aggressive treatment plan for him. I'm looking for any of your experience with Humira or Remicade?

 

[asadmom]

Is Stelara an option?

 

[my little penguin]

Most insurance require humira or remicade as the first biologics used due to cost .
My kiddo has been on both plus Stelara
The nice thing about remicade is bloodwork is done with infusions and remicade works quickly within 6 weeks
Buesonide is a steriod and is not meant to be used long term
Pentasa was similar to an aspirin for a brain tumor according to most Gi (not helping but not hurting either ) it only treats top layer of the intestine
Given his age puberty is a hard time for control
Hormones increase inflammation
Btdt got the tshirt
My “child” was dx at age 7 and is now 20.
Remicade they can adjust the dose quickly and it’s based on weight
Example 5 mg/kg every 8 weeks so when he grows and gains the remicade dose stays the same
Humira adult dose is only 40 mg per shot
So if he is 100 lbs now that 40mg /100 lbs
And then gains the normal 25-50 lbs he will be getting less medicine at the higher weight
My kiddo was on humira for 5 years
But had to increase frequency every year from age 9 till 14
At the end he was on humira every 5 days
Then switched to Stelara at 14.

remicade had murine protein which tends to cause allergic reactions
My kiddo is normally allergic to everything
So he lasted 8 months before he reacted twice

 

[Cmp213]

@asadmom it wasn't mentioned no

 

[asadmom]

Mt Sinai can now get Skyrizi approved with no problem from the insurance. Many of their peds on Stelara switched over.

We were offered the option just last month but jointly decided to wait.


@Pangolin

 

[Cmp213]

Most insurance require humira or remicade as the first biologics used due to cost .
My kiddo has been on both plus Stelara
The nice thing about remicade is bloodwork is done with infusions and remicade works quickly within 6 weeks
Buesonide is a steriod and is not meant to be used long term
Pentasa was similar to an aspirin for a brain tumor according to most Gi (not helping but not hurting either ) it only treats top layer of the intestine
Given his age puberty is a hard time for control
Hormones increase inflammation
Btdt got the tshirt
My “child” was dx at age 7 and is now 20.
Remicade they can adjust the dose quickly and it’s based on weight
Example 5 mg/kg every 8 weeks so when he grows and gains the remicade dose stays the same
Humira adult dose is only 40 mg per shot
So if he is 100 lbs now that 40mg /100 lbs
And then gains the normal 25-50 lbs he will be getting less medicine at the higher weight
My kiddo was on humira for 5 years
But had to increase frequency every year from age 9 till 14
At the end he was on humira every 5 days
Then switched to Stelara at 14.

remicade had murine protein which tends to cause allergic reactions
My kiddo is normally allergic to everything
So he lasted 8 months before he reacted twice

Thank you so much for all this information. I read the pros and cons of both and the allergic reactions is what concerned me the most. I feel like the Remicade is the best for him now it's just a tough decision to make right away.

 

[Cmp213]

Mt Sinai can now get Skyrizi approved with no problem from the insurance. Many of their peds on Stelara switched over.

We were offered the option just last month but jointly decided to wait.


@Pangolin

I'm not sure yet what our insurance will cover. I plan on diving into that tonight

 

[my little penguin]

So two things
Some larger hospitals can get a drug approved -where the drug companies cover it for a year such as skyrizi when it’s new
But that is not insurance coverage
You won’t know if a drug is covered until a prior Authorization is submitted to insurance from your Gi.
Insurance will automatically deny the first prior authorization.
Then your doc will need to provide documentation/test results etc..to get the biologic approved .
Sometimes they approved on the first appeal .
Other times a peer to peer review is required.

understand remicade is under the medical side of insurance
That means for some insurance as long as you have the right dx code no prior authorization is required

Humira is prescription side so that always requires prior authorization.

 

[asadmom]

I'm not sure yet what our insurance will cover. I plan on diving into that tonight

Putting details aside, my son was on Humira for the simple reason of the convenience. As you already know by now, we embark on a trial-and-error journey in terms of treatment options when we are chosen by Crohn's. Humira and Remicade were both offered: Humira was going to be every 2 weeks (annoying) and Remicade was every 8 weeks (great). Humira would be shipped home and administered by ourselves (done in a minute) whereas Remicade was done at an IV center for hours. My son was really anxious of hospitals and needles so it's a no brainer for Humira to win out.

Fast forward, we are now on Stelera: self-injection just like Humira and every 8-weeks like Remicade. It's the least immunogenic and it's a newer and a different type of class of drug than the anti-tnfs. Just last month, our doctor said they can now get the prescription for Skyrizi so I am very glad to know that more safer options are available for peds.

I don't know how it works with your clinic but I'd let the doctor deal with the insurance. If your doctor supports a med, he/she will handle the paperwork. I say if you want to go straight to Stelara (and many, many peds do as their first-line) you should discuss with your doctor first to get him/her onboard.

PM me offline. I can help you.

 

[Cross-stitch gal]

My GI recently re-diagnosed me from UC to Crohn's and my new GI is trying to put me on Skyrizi. It makes more sense now that I happened to look to see when this medication was made and found out how new it is!!! Thanks for the info about the challenge my GI will have to get me covered with insurance! This helps me understand more about how long it may take.

 

[Maya142]

My daughter has been on both Humira and Remicade. Remicade has the advantage of being dosed based on weight, which is VERY helpful for a growing child. You also have the advantage of being able to change the dose and frequency. You can only really change the frequency for Humira, from every two weeks to every week.
I know the allergic reactions for Remicade sound scary but not everyone has them and your child will be closely monitored by nurses. Both my daughters have been on Remicade multiple times, which most people say you can’t do (i.e. stop it and restart it). They both have moderate to severe inflammatory arthritis and ran out of treatment options, so had to re-try drugs. My younger daughter has IBD too. They actually didn’t mind infusions when they were younger - it was an excuse to miss school and watch TV, read, nap or catch up on homework! If you go to a pediatric hospital, the nurses are wonderful with kids and most kids like the fact that blood work can be done right there and so it’s only one poke every 4-8 weeks, depending on what your kiddo needs.

My daughters actually preferred Humira though because it was a 10 second injection every other week or weekly and then they were done. They both did their own injections, starting at 13 and 15. Their doctor encouraged that to give them a sense of control and they both were scared in the beginning, but ultimately preferred it.

I do want to add that biologics are very safe drugs and in the 14-15 years my daughters have been on them, they have had no major problems. In fact, my younger one’s IBD improved immensely on Remicade in just 8 months and because we treated it aggressively, it has not been a major problem. The only side effects my daughters have had is being tired the day after Remicade infusions. They had no side effects with Humira.

I also wanted to add that my daughter has had iron infusions several times, though her hemoglobin has never been that low. We were told typically if it’s under 8, they do a blood transfusion instead of just an iron infusion. But anyway, iron infusions helped her immensely when her iron was very low before she was diagnosed with IBD and she felt SO much better very quickly. Hopefully it will be the same for your son.