14yo Boy w/ Crohn's - Lilada making things worse

[BoyMom#32]

Hi,
I am new to this site.
My son was diagnosed with Crohn's a year and half ago due to having blood in his stool. He had no other symptoms of the disease at this time. They did a colonoscopy and endoscopy and found inflamation in the lower intestine and right at the ileum. His GI prescribed Lilada - 4 pills 1x per day. Since diagnosis 1.5 years he has had increased symptoms (constant loose/watery stools, still blood in the stool, dehydration, fatigue, ect.) His fecal test is over 1200! We used a suppository for a few weeks and the bleeding stopped, however they stopped that because it wasn't a "long term" solution.

Monday we had another colonoscopy / endoscopy done and it turns out the Crohn's is getting worse?!?!!? Inflammation on the left side from his rectum up the left side of the lower intestine, around the illium, and now there was bleeding around the appendix?.....Isn't the medicine supposed to help - not make things worse? Now they are talking about changing his treatment plan to Remicade infusions. I am worried because I heard that a side effect of Remicade is unusual cancers especially in TEENAGE BOYS



Anyone else have similar experience with Lilada and had a positive result with Remicade?
:frown:

 

[my little penguin]

More later
Liadia is a 5-Asa which is not approved as a monotgerapy for crohns only UC since most of the time it's not enough the drug didn't make him worse
It just didn't stop the disease from spreading
Cancer is only a concern T cell lymphoma when the combo meds of remicade and 6-mp or Aza are used

 

[my little penguin]

Read this similar discussion
http://www.crohnsforum.com/showthread.php?t=73927

 

[Maya142]

Hi and welcome!
This is a great presentation about the risks and benefits of various IBD meds: http://programs.rmei.com/CCFA139VL/

My husband and I agonized and agonized over the risks of biologics, but once we went on them, we never looked back. At some point we realized that the risks of the disease are much scarier then the risks of the meds. They both went from missing a lot of school and constantly being in pain, to normal, happy teenagers. The older one is still doing great and younger one is getting there, slowly.

They had no side effects with Remicade/Humira and quite liked missing a day of school and getting to relax and watch TV for the Remicade infusions. They were both tired the day after the Remicade infusion, but besides that, no increase in infections or any other scary side effects that you read about.

Good luck!

 

[Chester31]

Hi,
My son was diagnosed when he was 14, just over 2 years ago. The drugs terrified us and we hoped that we could manage things with just Pentasa and diet. We couldn't! My son has been on weekly Humira and Mtx since April. Unfortunately these don't seem to be doing the job either and it looks like we are now going to have to think again. He has had no side effects from the Humira. It's not an easy decision to make but I really wish that we had started on biologics sooner - although it's not generally an option in the UK until all other meds have been tried.
Good luck!

 

[Jmrogers4]

I don't think Lilada was making things worse it just was not able to control the crohn's on its own which is generally the case, especially in pediatric crohn's.
My son started on remicade when he was 14 after several years of trying other lesser meds. It completely turned things around for him, it has been just shy of 2 years he is now 16 and has been in remission since then.
It's really important to get things under control at this prime time of growth and development. How's his height and weight? My son had stopped growing and it wasn't until we got the disease under control that he took off and caught up on growth.
Many kids are asymptomatic or only have one symptom and have tons of damaging inflammation going on inside.
Uncontrolled or under controlled disease can cause a whole host of problems some of them critical.
Keep us posted and good luck

 

[BoyMom#32]

Thank you all so much! you have helped ease my mind! <3

 

[crohnsinct]

Ditto to all of the above but also want to add the sooner you get inflammation under control the less risk of surgery down the road!

Lymphoma risk is rare...HTCL is the deadly rare cancer and it is extremely, extremely rare!

We are almost 4 years on Remicade..grew 8 1/2" and gained 43 pounds! No flares and no infections or illnesses and she has been exposed to it all.

I have a second daughter who is 9 months from dx and still not controlled and I am begging for Remicade.

 

[CrohnsKidMom]

Welcome to the forum, but sorry to hear your son is so sick. My son was dx'd at age 8. He's now almost 11 and has just had his fourth Remicade infusion. He takes a low dose, oral methotrexate as well. For the past two years he was on methotrexate injections as a monotherapy, but the drug stopped working this past spring and symptoms returned. I agree with the others, and think the drug your son is on is just not effective at stopping the progression of the disease, or getting him into remission. The side effects of all these drugs scare me, but the risks of leaving the disease under treated are just too big. These are hard decisions to make, my heart goes out to you.

 

[Mehita]

Huge Remicade fans here too! My son did Pentasa and Azathioprine, to no avail. Remicade (and prednisone) have been the only things to work for him. It's a bit of trial and error with the meds, but obviously Lialda isn't doing it for him and its time to move on to get his disease under control.

DS has had no side effects in the last two years and been in remission since starting. The nice thing about Remi is it tends to work well for kids and you can do many adjustments before having to give up on it.

Good luck!

 

[Farmwife]

Another Remicade fan here.
My kiddo was dx at 3 and is now 6. She still struggles with her disease(s) but by far Remicade has given my baby girl her life back.

I hate the list of scary side effect of these drugs but please remember that under treated or not treating IBD at all has far worse out comes then the drugs we fear.

As far as diet.......
It can be a help but sadly for my girl, diet never helped.