Your child's Remicade experience?

[Emily's mom]

My daughter (almost 8 yrs old) is scheduled to start Remicade early May. Emily is newly diagnosed with Crohn's. She has been on flagyl and has been on Mercaptpurine for two weeks now. I would appreciate any feedback on any child's Remicade experience.

Thanks,
~ Julia

 

[SupportiveMom]

My D had a very brief experience with Remicade. I can say it made her feel great at first. She was on it from September-February 2012. She felt great up until December where she started to show signs of developing a reaction to the medication. It happens to some, but not many. She had to stop Remicade completely at her last infusion in February 2012. We later discovered she had built up antibodies to the medication as well.

D started Remicade in the hospital and started feeling better within a week of her 1st infusion. It was great as she started to get back to her old self. The only down part of Remicade was blocking off 1/2 a day to a day every month or so to do the infusion. She was loaded with pre-meds (benadryl, tylenol) and slept for most of the infusion. Even when the infusions were finished in 4 hours D never felt well enough to go to school afterwards so she missed the whole day. It was hard scheduling them for a Friday or Monday & Saturdays were only at a few clinics, and completely across town, too hard to get to when you are still tied to the bathroom. I hope Emily has a place close by and all works well. Good luck!

 

[Maya142]

My daughter was on Remicade for 8 months last year. It took 2-3 infusions before she began to feel better. She liked Remicade much more than Humira because even though the infusions aren't the most convenient, she liked them much more than the weekly shot. She usually read, watched movies or slept during the infusion. She got pre-meds too, Tylenol and Benadryl, which made her quite sleepy. The whole process took about 3 hours for us, so she missed a day of school (which she didn't mind at all - she said was like a vacation!).
She never made it to the 8 weekly infusions (symptoms returned) and had infusions every 4-5 weeks. She also took methotrexate, both for her arthritis and to prevent building anti-bodies.
Once she had to stop the mtx, the Remicade didn't work very well for her joints anymore. Her Crohn's however, is in remission (she had clean scopes right after her last Remicade infusion). She didn't build antibodies to it though, so we may go back to Remicade at some point.
Can't think of anything else to add.. many kids do great on Remicade! I hope Emily will be one of them! Good luck!

 

[Sascot]

No experience, just wanted to wish you all the best

 

[Farmwife]

Sorry Grace is mtx and Humira, so no advice.

I pray this will be the start of a long lasting remission for her.

 

[Goofychicken]

No advice but I'm wishing you the best of luck!

 

[Jmrogers4]

My son started remicade in January and so far it has been fantastic we go for his 4th infusion next week. I posted this on facebook group earlier today but in the first one he is 5'2" and 90 lbs at his first infusion and the 2nd 3 months later at 5'2.5" and 105 lbs.

 

[SupportiveMom]

Wonderful to hear!!!

 

[Emily's mom]

Thank you everyone for sharing your experience and knowledge. I really appreciate it.

 

[my little penguin]

DS loved remicade. It boys day out ( him and DH).
They would watch movies . Eat lunch there get junk food .
It took all three loading infusions for DS to feel better.
He gained 20-30 lbs and really grew .

He was on it for about 8 months.
He had a lot of minor delayed reactions mainly skin( peeling blisters , rashes , face issues , scalp issues).
He had no antibodies .
But he still had an allergic reaction at the seven month mark despite pre treating with zrytec, Benadryl and tlyenol .
Next infusion they added iv steriods .
He still reacted so he moved on to humira.
Good luck

 

[Mehita]

We started Remicade while in the hospital last November with an abscess and fistula. My son felt much better within hours. By his second loading dose you would never have known anything was wrong with him and his labs quickly fell into the normal ranges across the board.

He's on an eight week schedule, but I've noticed increased, tho still mild, tiredness start creeping in around six and a half weeks. He's always made it to eight weeks though. He much prefers missing school one day every eight weeks than having to take tons of pills every day.

He does get premedicated with Tylenol and Benedryl and does a j-tip or Emla creme for the poke.

Since November he's gained around 10 pounds and two inches. It's been wonderful for him.

 

[griffin123]

My son is 14 and started remicade at the end of January, he takes Claritin and Tylenol before his infusion and he also takes methotrexate with it.. He started out weighing 76 lbs and was 4'8 1/2, his next infusion is May 2nd but he had a tummy bug earlier this week so we went and saw his GI and he is now 88 lbs and 4'9 3/4. I just wish we started remicade earlier like his GI wanted but I wanted to try other stuff first before we went with one of the top meds.

After a year of different meds my son is finally growing and gaining weight and we are very pleased with his progress.

 

[Jo Ann]

My granddaughter was on Remicade for 3 months. She started in October 2013 and started showing signs of building immunity to it by January. The shortened the time in between to get her infusions. She has now started in Humira and has had her second dose recently. She was doing well on the Remicade. I was so hopeful that she was looking forward to a few years of stability. I am worried now.