Side effects of infliximad

[kathymum]

HI All my Little girl Amy aged 11 is in a flare up she is on modulen for 3 weeks and then on to infliximad by infusin on the 24th march i am terrified and my husband is worse.
She has already had azzathiaprine steroids and is currently on methotrextae
Amy was admitted to hospital last week through A&E to a hospital 100 miles away form home .Luckily she is home now after having scopes done .Her small bowel is really inflamed as is her pancreas.
Any advice or what to expect about this new treatment would be great She is so hungry and miserable and hates the modulen ( i feel like crying )
Any advice would be great
kathy

 

[Clash]

Infixamab really helped quickly with all the pain and symptoms my son was having. He didn't have any side effects really.

I hope the med works for her and brings her some relief quickly!

 

[24601]

I'm don't have a child with Crohn's but I do have Crohn's myself and I just wanted to send my support your way! Trying new meds is scary, even as an adult deciding for yourself, and I imagine it must be so very much worse when it's your child.

For what it's worth, I've been thinking recently about what I would have wanted my mother to decide for me if I had been diagnosed at 8 or 9 (when I already had symptoms) instead of 17, and you're doing everything that I would have wanted her to do then - the Modulen and moving to infliximab (even though it's scary) since the other meds haven't worked.

Having just Modulen is tough. Has your daughter started to feel any better on it? And is she getting enough calories from it? Because if she isn't that can contribute to feeling hungry in addition to really missing normal food.

And have her doctors allowed her to have clear boiled sweets or lollipops with the Modulen? A lot of doctors do and that can help somewhat with missing eating food. There was even a study done at CHOP in the US for children showing that eating 10% of calories from normal food and getting 90% from a formula like Modulen gave as good results as excluding all food. That might be something to think about - and to talk to her doctor about - if your daughter is at the point of giving up. But she should know that she is doing really well - 3 weeks is great and I think everyone who does it finds it hard. Even as an adult, I've struggled with being on liquids only, knowing that it was entirely my decision to follow that treatment, and I think, for me at least, sometimes it was really essential that everyone around me understood how hard it was for me to see them eating food or smell their food and not be able to eat it and make some adjustments. That and giving myself lots of treats - even just things like watching my favorite tv programmes or movies.

About infliximab - when I had the infusions, the first couple of times I got really sleepy afterwards for a day or so. But other than that I had no side effects.

Sending hugs your way :ghug:

I hope Amy starts to feel better soon!

 

[my little penguin]

We used remicade for my kiddo at age 8
It was great and worked wonders for him
It did take about 8 weeks or a little more than 3 infusions to fully kick in

 

[Maya142]

Both my girls have been on Infliximab (Remicade) and liked it the best of all their meds! They had no side effects besides being tired the day after the infusion. They liked their infusions because they got a day off from school and got to watch TV, nap and relax!

Good luck!

 

[Sascot]

We haven't used Remicade but I have read really positive stories about it. Hope it works well

 

[crohnsinct]

My daughter was diagnosed at 12 and went straight to Remicade. That was 3 years ago and she has gained 39 pounds and grown 7 1/2 inches. The only extremely rare side effect she has gotten from Remicade is psoriasis. She has also not suffered from an immune standpoint either. Not one flare since getting to remission 6 months into treatment. She is the healthiest one in the house!

Both of my girls have done EEN with Boost and Ensure shakes. It is hard but the pay off is huge. I gave them a reward for each week they completed...manicures, new outfits, etc.

I am sorry to hear about her pancreas. Do the docs feel that was a result of the meds or the Crohn's....probably hard to tell.

Hang in there and good luck!

 

[positivemum]

Hi
I really feel for you. We went in for scopes to be told DS 16 had such sever inflammation had to stay in for IV pred and to start Infliximab. We were really worried but I had done some research and trusted the docs. The pred worked wonders and we are half way through that. But the infliximab has been fine so far. We have had the first 2 loading doses and between that and pred I have my son back. It is scary but worth it to see your child feel well and eat!

He has done full EN 3 times for 8 straight weeks so I know how tough that is. We paid him per shake as motivation!! He drank the lot- got his head in gear and felt better on it. Still using them now to supplement and control diet.

It will be fine

 

[positivemum]

We are in the UK and infliximab is a last resort not a first option but it has worked so far... fingers crossed

 

[SupportiveMom]

Remicade can make a considerable difference for many kids. The information on it and moving to the step if biologics can be scary, but if your kid is suffering,it may be the best choice. When things calm down a bit ask the GI why Infliximab, and what the GI is hoping for with your kid being on it. It may help come to grips with it better. It helped my husband as when we were in the thick of diagnosis at the hospital he really struggled with all of it to the point that he couldn't help make decisions and it fell to me.

Steroids are going to really make her hungry. I find making some easy snacks she can just grab and go makes things easier and then she is less likely to make a poor choice that will make her symptoms worse. There is a thread here on things to pack for an infusion some parents have created. It can come in handy.

 

[Mehita]

We love Remicade. It's the only thing that has worked for my son after two years of messing around with the "lighter" meds. He's been on it for 16 months now and has never had a reaction or side effect and is doing great.

I was scared the first infusion, but it started working within an hour and then I was kicking myself for not getting him on Remicade sooner.