Starting Infliximab

[CDJ]

Josh is starting Infliximab on Wednesday. It seems to have taken us an age to get to this point as he has had two positive quanterfeon tests, but this is now going ahead with him taking medication along side this.

I am very apprehensive about starting Infliximab with all the risks etc involved. At the moment he is doing pretty well, mainly because he has been taking steroids since November due to the azathioprine stopping working. It feels very hard taking him for this when he is well. He is even managing full days at school at the moment, something he couldn't do for months. But I know as soon as we stop the steroids he will flare up again.

It is at times like this with being a single parent that I find making these decisions on my sons life really hard and I hope that I am making the right ones for him. His dad isn't interested at all, and I have no one else to talk to about all this that understands.

What should I expect once he starts this, will there be side effects? Will he be able to go to school on Thursday? How is he likely to feel going through it?

Sorry lots of questions, I feel pretty helpless on my own with this at the moment.

 

[SupportiveMom]

Sorry to hear you are now moving onto biologics. I know it has been a hard road for Josh. I hope Infliximab give him that step to get his life back.

When D was on it I always picked a morning infusion and made no plans for the afternoon. She normally slept at the infusion so when we were done she was groggy and tired. No activity in the evening, just movies and drawing and a good meal. The next day she was fine for other activities.

I have read other people have been able to do normal functions right after. I don't think it is common. Sounds like you are doing all you should. I hope relief comes soon.

 

[Clash]

I really hope the remicade work to keep him feeling good.

C had no problems with infusions. Sometimes he'd sleep other times he do homework. He would sleep on the way home due to the benadryl he was given but would be fine that afternoon or evening.

 

[crohnsinct]

The only thing my daughter got was the very rare side effect od psoriasis. Other than that, smooth sailing. hasn't even gotten sick due to lowered immune system. No flares in three years either!

At the beginning they used to premedicate with benedryl and she would sleep on the way home but once we got home would do her two hour track practice followed with two hours of swim. Our center no longer premedicates and we do early a.m. infusions (leave our house at 6 a.m.). After infusion se goes to school, track and swim.

Good Luck! I hope it works as well for him as it has for O.

 

[Jmrogers4]

After Jack's first infusion he had a headache but tons of energy until about 8pm where he just completely crashed.
For us it was amazing results about 1/2 way through the infusion Jack tells me he is starving, first time in years! You could see color come back to his face.
We generally do afternoon infusions, he goes to school 1/2 day leaves at lunch time. He generally reads, watches movies or plays games during the infusion. Only once has he napped. I know a lot of people are tired after infusion and the next day but he always has a ton of energy.
Jack has not missed a day of school this year other then the 1/2 days for infusions every 8 weeks for the first time in 5 years. He feels fantastic and it has been amazing. I hope it works amazingly for Josh and he soon will not remember what it feels like to be sick.

 

[CDJ]

Thank you for all the positive responses, it puts my mind at ease a little. I think I will be glad when the first one is over so I know what to expect, it's all an unknown at the moment. I really hope that this stops the constant flare ups he gets.
It's going to be a long day as it is. We have to be at the hospital early morning and have been told to expect to be there all day.

We don't seem to have as much say as to the times Josh can get his Infliximab here in the UK, just have to get what we are given

I will let you know how we get on.

 

[Sascot]

Good luck, hope it goes well

 

[Maya142]

We had no real issues with Remicade except tiredness that day after the infusion. It took 3-4 infusions to work for my daughter, though she saw a little improvement after the second infusion.
My girls loved missing school and watching TV/napping while having the infusion.
Make sure he's well hydrated so it's easier to find his veins.
Good luck!!!

 

[Farmwife]

Grace was one of the very blessed kids that saw an AWSOME improvement the first infusion.
Grace loves going also. She gets spoiled rotten!
She seems to be tired the day after now that we've upped her dose to ever 4 weeks.

 

[malorymug]

I remember being so scared for the first infusion. But it went really well. My child ate real food, like really ate and not picked, for the first time in months. It was amazing to watch him devour food.

It was a 6 hour infusion, he sleep through lots of it, which made it easier for me to adjust to the environment.

He did fine after it, we stopped for ice cream on the way home. He was energetic that night and felt great the whole weekend.

I hope it works great for your boy

 

[awmom]

Hi CDJ, I know how worrisome it is to start these new treatments, my son had no problems with remicade. He had the infusion on a Friday, and always wanted to go back to school (the 1st one took about 4 hours). During the procedure he usually watches a movie or program. Now I think they only last about 2- 1/2 hours. He was tired the next day, but still able to function. After the first few appointments we always tried to schedule it on a Friday so he would get some down time for a couple of day. Please let us know how he does, and take lots of deep breaths!

 

[kimmidwife]

Wishing you good luck! My daughter was always tired the next day but fine the day after that. Hope it all goes smoothly and it is his magic!!!!!

 

[Worried mama]

My son just had his 3rd infusion. He seems to feel fine afterwards....we bring a DVD player and he watches movies. I also schedule them on Friday afternoons just in case he feels tired the next day, he can sleep in, but he hasn't needed to. Good luck.

 

[Mehita]

Like the others have said, bring something to do (and for, you too!) since it can take quite awhile. DS has been doing infusions for 16 months now. He's never had any side effects or reactions. Early on he used to be bouncing off the walls after infusions, but the last 6 months he's been tired enough to nap after. We make sure he has no plans for the evening in case he just wants to rest.

I've heard varying info, but our nurse told us the first three days after an infusion is when the immune system is knocked down the lowest, so we generally avoid germy places for those days. We usually do Friday afternoons.

Good luck! I hope it works wonders for him!

 

[CDJ]

Thank you for the messages of support. First infusion went well, no problems or reactions at all. The hardest thing was the hanging around we had to do. We ended up being at the hospital for 10 hours! This was due to Josh having to have a chest x ray first, which then needed to be studied. We had to wait 4 hours before they put the cannular in, then for the infusion itself. Infusion itself was two hours.
I am pleased it went well, I think I was more nervous than he was! He was fine when we got back last night, but I am letting him sleep in this morning and taking him into school later as I feel he needs the rest.

Hoping that this is going to work for him.

We don't seem to get a say in what day we can go otherwise I would opt for a Friday too.

 

[SupportiveMom]

So glad it went well and infusion only lasted about 2 hours! Did they give him any benadryl or tylenol?

I know it's hard to remember but don't forget about you. Take care of yourself too!

 

[CDJ]

Yes, he was given both [ well paracetomol here not Tylenol ]. Two hours seemed to be the norm for the infusion as others who were there were on the same time frame.

Don't know if it is with everything going on, but I have a major migraine today -- not had one in a long time. I think I must be getting run down now.

How is D doing now Supportivemom?

 

[Tesscorm]

Glad the infusion went well! I hope it works well for him for a long time!

And, hopefully, the next apptmt will be quicker! My son is usually at the clinic for about 2.5-3 hours.

 

[my little penguin]

Glad the infusion went well the first couple are the hardest
Then it becomes the norm

 

[positivemum]

Hi We are UK too.

My 16 year old DS has had the first two loading doses of Infliximab and the next one is in 2 weeks. He is also on a ten week course of steroids - about halfway through now.

The difference has been immense for him and he is eating and going to school full time again! He seems ok on infliximab so far. We get an appointment sent through and it is for the place in the hospital where he has bloods etc so he knows the nurses well and they know us. We were on about 6 hours - 3.5 on infusion. We speed things up a bit by putting on his numbing cream at home so he is ready to go for his cannula. He struggles with them in his hand so his has them put in the crook of his arm and has been fine with this. We haven't seen any issues so far - gets the odd headache but that is because he needs more water!

Feel free to contact me if you want any more hot tips and info! Good luck

 

[ChicagoMom]

My daughter has been on Remicade since October, and honestly, it's been a wonder drug for her. I was super scared of it too, but it has made such a difference for my daughter that it's been worth the apprehension and fears. She is growing, (1 inch since Christmas!) and feels really good. She's usually a little tired after the infusion, rests for the remainder of the day, and then is back to school and feeling great the day after.

Good luck! These decisions are so hard to make!

 

[Lindseyw4]

I know how you feel with being a single parent of a Crohn's kid. Often, i wish i had a husband to help support me through my emotions so i could be a stronger support for my son. That's honestly the only time i felt i "needed" a man. My son is currently on 6mp and we're being advised to switch to rem, so I'm really appreciating reading this thread!