Considering Remicade for 16 year old boy

[BoyMama2000]

Hi Everyone,

How did parents of teenage boys or young adult males decide to take remicade. What is the latest research about the risk with this. My son's Crohn's is limited to the terminal ileum but he just got a second perianal abscess. Surgeon is checking next week to see if there is a fistula. If there is, I know our GI may bring up Remicade and want to be prepared for the discussion.

His surgeon does not feel he has true perianal crohn's inflammation. This abscess formed in the groove that remained after he had a fistulotomy from his first abscess at age 14. He was diagnosed at age 13 and his only symptom or sing other than these abscesses were growth. He grew a foot since being diagnosed and if finally well into puberty. He still isn't shaving but doing well except this issue.

Thanks.

 

[Clash]

My son went straight to remicade following dx so he didn't have any prior meds. There are studies that show a rare but serious risk with combo therapy whether used together or at different times, it seems newer studies may contradict this but maya142 or my little penguin may know specifics.

Mus son's disease was located in the TI as well and after trying remicade at different levels and schedules and adding mtx we opted for surgery and had that area removed. He just started back on remicade after his surgery.

Good luck at the appointment and I hope all goes well.

 

[Maya142]

I have a 17 year old daughter and we went straight to Humira but when it didn't work by itself we had to add MTX. Lots of doctors now (both GI's and rheumatologists) add an immunomodulator like 6MP, Imuran or MTX to prevent your child from building antibodies to Remicade/Humira etc.

Here's a presentation I like about balancing the risks and the benefits:http://programs.rmei.com/CCFA139VL/

 

[my little penguin]

Ds started remicade at age 8.
He was dx at 7
He tried EEN plus 6-mp plus pred
He had failed 6-mp plus allopurinol -liver issues
Mtx by itself wasn't enough -vasculitis had to stay on pred
So remicade by itself
After 8 months he reacted twice ( no antibodies ) so no more remicade .
He is now on humira and has been for 1.5 years plus Mtx

How I sleep at night
I like numbers

Odds of death in the US for those under 14
By car 1 in 250
By drowning 1 in 1000
Average non Ibd person on the street of getting tcell lymphoma 2 in 10000


Odds with biologics plus immunosuppressants regardless of age or gender 6 in 10000

Quality of life and possible change of natural history of the disease with biologics
Those odds I will take

Add I. Tylenol can cause liver damage /Steven Johnson syndrom /even death but that is given to infants
Risk vs benefits
The docs know what under treated crohns can do its not pretty at all.

So that is what I do
Good
Luck

There is a study in the pediatruc research section
Stickies at the top of the parents forum

 

[BoyMama2000]

Thanks everyone. That was my initial thought after reading the same stats. We are constantly balancing risks in everything in life. I know the biggest risk for my 18 and 16 year old occurs every time they get in their cars!

I also really like the idea of remicade because I am nervous when he goes to college in 18 months that he won't be compliant with his meds and with infusions scheduled, he won't forget! He forgets to take pentasa a lot but he never misses his weekly methotrexate injections because I give them. I am not sure it will even be indicated but if there is a new perianal fistula (we should know next Thursday) and if he is also flaring in his ileum, it will be time to consider this and I wanted to think about it ahead of time.

Thanks again!

 

[Jmrogers4]

My 15 year old son started on remicade almost a year ago, he also has disease located at TI. For us we had tried everything and he just wasn't thriving, he had simmering inflammation going on. It's easy to say now that I wish we would have gone there sooner as it has been a night and day difference. I can say he is truly in remission he doesn't even think about the disease except when he has to go for his infusions and then it's a 1/2 day or day off school and he watches movies plays video games or just naps.
I know it's in no way easy to make the decision and I fought it for a long time but just wanted to put it out there as a success story for you. I hope he finds remission no matter the treatment you decide.

 

[Xime]

edited

Hello there. I am new to the forum. My daughter just started on Remicade for the first time and so far it's been good. She's on 40mg of prednisone too, so I am not really sure what is working. I am hoping to get her off the prednisone soon, as I heard the combination of it w Remicade is not good.

any one here is using diet as well?


Dx- Ulcerative colitis 2011
Asacol, prednisone, Lialda, Colazal, Uceris

FMT via clinical study in 2014 (unsucessful)

Dx- Crohns 2014
Remicade, prednisone
SCD diet

 

[Jmrogers4]

Welcome Xime,
We've used many of the diets some seemed to help with symptoms but we were never able to achieve remission with diet.
My son has been on remicade for the last year with fantastic success, it has been a night and day difference in his disease.
Do you have a schedule for weaning off the prednisone yet? Crohnsinct's daughter I think had trouble weaning off prednisone while starting remicade she did a course of EEN and that seemed to give the remicade the extra kick it needed in order to get things under control.
I don't think it's necessarily a combination of pred and remicade as it's long term prednisone use that brings problems. Prednisone works quick it's that medicine we all have a love/hate relationship with. Love that it works so quickly but hat the side effects.
Please have a look at the parents of kids with IBD section as well, lots of advice there and a fantastic group of parents.

 

[crohnsinct]

Hi Xime

JM is right. My daughter was started on prednisone along with the Remicade because it can take a while for Remicade to become fully effective. The only problem was every time we tried to taper the steroid symptoms crept back in. A lot of it was that she was burning through the Remi too fast but after 4 months of tapering and adjusting Remi doses and schedule the doc determined she was steroid dependent. While the Remi was doing the heavy lifting it needed a little help. He suggested we add Methotrexate. We decided on a 6-8 week course of Exclusive Enteral Nutrition first. The EEN worked brilliantly and got our daughter to clinical remission where she has stayed for another two and a half years...and counting! We eventually added Mtx but that was for psoriasis and psoriatic arthritis.

We all loathe prednisone and are anxious to get the kids off it but be patient and take the taper slowly. Too aggressive a taper and you could find yourself set back with symptoms.

Good luck!