Remicade as first line of treatment

[jland25]

Hello all--

I took my son (12, dx with Crohn's in March) for a second opinion and this doctor is suggesting that rather than 6-MP we move straight to Remicade as he tapers off Prednisone. She is concerned that given his age, extent of disease, and extremely low height and weight (he is 4'5" and 55 pounds) the 6-MP will not be effective enough and we will be having the "Remidcade conversation" 6 months down the line with him even farther behind.

Has anyone started treatment with their child with Remicade rather than 6-MP or the like?

Did you have trouble getting it covered by insurance? My son is on Medicaid due to his disability, but I don't know if that makes things easier or worse.

Thanks for any information!

Jland

 

[my little penguin]

Remicade with the first few months of dx has shown the highest success rate and reduces the possibility of surgery .
DS went through step up from the mildest to remicade which took over a year of him being miserable and multiple courses of pred in between .

Remicade was a miracle drug for my kiddo and it let him grow.
Ask about adding en ( formula )as well ... Its great for kids reduces inflammation and helps them grow when they need to .

Good luck

 

[Clash]

My son was dx'ed at 15 and due to the severity of his disease he went straight to remicade. We saw results in his symptoms after the first dose. It was literally night and day.

He was on remi for 2 years and we had to up the dose, tweak the schedule and eventually add methotrexate.

Remicade was a great med for him symptom wise and though recently we found disease progression I wouldn't hesitate to do it all the same way again. It was really hard to drop this med after seeing my son turn around so completely on it.

As far as insurance, we had private insurance and no problems getting it covered. Also you can Google Remistart, it is a program that helps pay what insurance won't. I think we ended up paying about 250.00 per year after insurance and Remistart.

 

[xmdmom]

Since he's 12, it's important to get the Crohn's under control quickly so that he can grow well. I don't know what the treatment should be. I second asking about enteral nutrition.

<<<HugS>>>

 

[DustyKat]

You have found yourself with two doctors that follow the two different treatment paths.

Your current doctor is following the step up approach, start at the bottom rung of the ladder and work your way if and when each treatment fails.

The second opinion doctor is going with the newer philosophy of the two. Start at the top of the ladder and hit the disease hard and fast, the idea being to find remission quickly thereby minimising damage and in the long term avoiding surgery.

My children didn’t make it to this point as surgery was required early on.

Given different circumstances I would likely go straight to the biologics but just a couple of questions:

1. Is he responding to the Prednisone?

2. Has he already started 6MP?

Dusty. xxx

 

[jland25]

Hi Dusty,

Yes, he is responding well to the Prednisone.

No, he has not yet started the 6-MP. Given the risks of 6-MP prior to or with Remicade, it is very tempting to have him forgo the 6-MP. The second doctor did say she would not add 6-MP once he started Remicade. She would try another biologic if Remicade did not work well for him.

I have no idea if any insurance covers Remicade off the bat, though, even in cases where the child is quite unwell. It seems like the step-up approach is still the norm.

Thanks!

 

[Tesscorm]

Hi Jland,

My son was 16 when diagnosed. His first treatment was exclusive enteral nutrition (EN) (formula only, no food) for six weeks. This treatment is sometimes/often used as an alternative to steroids to induce remission. After the six week period, he reintroduced foods and remained on supplemental EN (half dosage plus regular diet) as his only treatment (no meds, except for an antacid) for two years. This maintained clinical remission (no outward symptoms), however, inflammation continued to be present. Upon transfer from a ped to adult GI, this GI was adamant that remicade was needed to eliminate the inflammation. He felt strongly that not using a biologic would be to risk further damage and eventual surgery. So, we went ahead with remicade as a first drug treatment.

I did ask the GI why not an immune suppressant first (imuran. 6mp, azathioprine or methotrexate) and his response was 'why not use what we know will work best? Once scarring is present, no medication will help scarring so why 'save' a better drug for when it can no longer help?'. I've also read that remicade (and maybe all biologics) are most successful when used as a first treatment and when used within a year or two after diagnosis (perhaps because the damage is still limited??) - so, one 'justification' of mine in coming to terms with the decision to move ahead with such a strong med straight off was that if we were going to eventually use it, why not use it when it had it's best chance to work.

I've also read that cancer risks increase when a biologic is used with or after an immune suppressant (although, please keep in mind even the 'raised' risk is very small!!), so another justification was that I would minimize the cancer risk by using a biologic now and, hopefully, forego the need to ever add an immunosuppressant.

I have read that the disease is usually more severe in children and, as it is happening during the growth period, it is even more important to get all under control. These are all tough choices. :ghug:

Re insurance - things are a bit different in Canada, however, remicade was covered even though it was the first medical treatment.

However, as far as supplemental EN... another strong believer here in using EN as an extra aid! My son is now in university and, although he has reduced his supplementation, he still drinks 1-2 Boost shakes every day. In him, at his age, it maintains a level of nutrition, in a younger child it helps gain weight and height during crucial years.

:ghug:

 

[Mehita]

One test they should run before starting 6MP is called TPMT that will let you know how well or even if your son can metabolize 6MP. Just my opinion, but if you're leaning towards 6MP but this test comes back as intermediate, meaning he may or may not be able to metabolize it, I'd then skip right to Remicade.

Just our personal experience... DS was in the intermediate range, but we did Azathioprine anyway. After 6 months he continued to flare and developed a fistula and abscess. The Aza was just going through him with no effect, so he had to move to Remicade.

The only positive was that we kept the insurance company happy because they did require a bottom up approach. The negative, obviously, was that he was essentially untreated for those six months.

He's been on Remicade for five months now and it's his wonder drug. He's doing really, really well. Being that your son is 12 and nearing puberty, going for Remicade to get things under control quickly before puberty hits can be a benefit in avoiding growth delays. Just something else to think about. 6MP can take 3-6 months to work and puberty won't start until his disease is under control and I think at this particular age, the sooner the better.

Good luck!

 

[crohnsinct]

Just adding to the list of Remicade first users. My daughter was 12 when dx'd and very, very sick. Remicade was the only option presented to us. She got to remission after about 6 months of tweaking here and there and a course of EEN. She has been in remission for almost 2 years now.

Good Luck with which ever you decide!

 

[SupportiveMom]

We also went pretty much straight to Remicade due to the severity of D's disease. We did a week of Flagyl/Cipro but it didn't do anything. Prednisone was the 1st thing given, then Flagyl/Cypro on the 3rd day of the hospital. After a week nothing changed and the doc added Remicade the 3rd week, discharged on the 4th week.

There are good things to say about the top down approach. You can't live off Prednisone long term. It presents a whole new set of problems. Remicade works pretty quickly, which if your child's symptoms are a problem, a quick way to potentially get them under control. We saw a difference by the 2nd treatment. Humira, Imuran, Methotrexate, and a few others can take anywhere from 6 weeks to 6 months to work.

 

[momofboy]

My 13 year old son was just diagnosed this week and due to his severity his GI wants to put him straight on Remicade along with the immunosuppressant. I have mixed feelings as well about all of this. Is it pretty common to start both the Remicade and immunosuppressant together? I have heard the cancer risk especially for teenage boys is greater with this??

 

[Brian'sMom]

We went step up approach... and it was yuck! I think our insurance wouldn't cover unless the others didn't work. That being said... I think some GI doctors can get insurance to do what they want. (For instance, we now have Mayo on board.... absolutely no problems with insurance anymore-- some things I find out after the fact... I got a letter that our insurance denied our Cimzia after he'd been on it for 6 months... I called the insurance company and our Mayo GI had already taken care of it) Don't be scared of top down... getting a hold of this disease fast is crucial I think. And Remicade has been around a long time now. Unfortunately my son had an allergic reaction... but I think its the best for Crohns of the TNF drugs that are out there.

 

[my little penguin]

Also keep in mind
Untreated crohn's or under treated crohn's has a higher risk of surgery , cancer and death.
The risk is only slightly increased and that us for all populations not just teenage boys .
The risk of death from a car ride is way higher
1 in 250 for 14 and under
1 in 1000 from drowning.
2 in 10000 for tcell lymphoma for average person without Ibd or meds
6 in 10000 for combo therapy biologic plus immunosuppressant this includes Mtx 6-mp Etc...

Any immunosuppresant use either prior to biologic or combined increase the risk .
When used together is reduces the risk of antibody formation

DS had a reaction to remicade after 8 months without any antibodies but he is allergic to everything.


The risks we take daily with our kids is much greater but no one is constantly pointing them out.
We take those risks because they improve quailty of life.

That is how I rationalize it.

Biologics were the only thing that have me my kid back .

Hope it works well for you

 

[Farmwife]

Yes all these things are scary.
I don't think I'll ever get use to the warning list that comes with the meds.
My girl is only five and to think that she has a life time of these meds. I hate it all.:ymad:

However, she runs now (couldn't with her arthritis flare),
she doesn't care where the nearest bathroom is (I do when her IBD flares)
but most of all you couldn't tell, as of today, that Grace is sick.
Humira and mtx are one of the reasons for this.

At least today she's happy and so am I.:hug: