Our update - remicade

[LJS]

Well, we met with ped GI last week and we are moving ahead with remicade. Son's sed rate is at 39, so no reduction in inflammation.

We are scheduled for our first 4 sessions. The first one is next Friday, then 2 weeks later, then 4 weeks after that, then 8 weeks after that one. The first 3 loading dose sessions are 3-4 hours each, then when we get on the every 8 week schedule, they are 1-1.5 hours each.

Would love to hear how this compares to your kids' schedules AND any suggestions/recommendations. I'm not sure they are doing any pre-med (benadryl) as they feel that that masks any reactions so we won't really know any reactions/side effects that way.

I'm feeling pretty calm about it all and so is son, but any hints, helpful suggestions, etc are really and truly appreciated!

thanks,
Lin

 

[SupportiveMom]

When my dd was on Remicade we had the same dosing schedule. I think it is standard. by month 3 we moved to every 4-5 weeks. The infusions NEVER took only 1.5 hours except for the one done through the PICC line in the hospital (the 1st one). Everyone took about 4 hours, until she started having reactions, and then became 6 hrs for an infusion. It was that long because they had to slow down the rate she was taking it in in hopes to avoid effects.

I highly recommend premeds, tylenol, benadryl, gravol. Most kids don't react like dd and don't need the slow infusion, but there would have been no way she could have survived without the premeds. Do the premeds as needed at first to be sure. Pay close attention. Looking back there were signs of issues well before and I didn't know that was what it was.

I set up an infusion care kit for dd. It had her favorite blanket, extra sweater, a new magazine each time (normally sports illustrated or a teen mag), a lovey, snacks and she always brought her favorite book. She slept a lot of the time, but it was nice to look forward to her kit she said. I also always brought my tablet, so if there was room for me to sit near her I could play a game with her.

Good luck and I hope it goes smoothly!

 

[Mehita]

That was our exact schedule to start with, 0, 2, 6 and then every eight. DS will be getting his 4th infusion next Friday as well. We'll send you telepathic good Remi vibes!

Our clinic offers lidocaine creme to kids who want it. You just have to ask when you check in. For DS, the creme is more a mental security blanket than anything, I think.

Drink lots of fluids the day before and morning of to plump up the veins.

Bring a lot of stuff to do. Books, magazines, tablet, phone, chargers. Also food. We can order food from the hospital cafeteria, but not all places are like that.

I'm convinced labs should be run at every infusion, but our GI disagrees. Whatever your arrangement, be sure the orders are in the system otherwise they have to call the GI, wait for him to call back, and it adds more time to you being there.

Your kiddo may be tired that first day and up to a week after. Mine was bouncing off the walls, but it's different for everyone.

Keep a log of the location of the IV each time so you are sure to alternate it and not keep using the same spot every time. Also, if kids are writing or gaming, sometimes it can be annoying to have the IV in their hands.

Over time, be sure the Remi increases with any weight gain.

Also, after you finish the loading doses and are waiting on the eight week schedule, make note of if and when symptoms start coming back in case eight weeks is too long. From others here, I've heard that 8 weeks isn't too common with kids. Usually six or seven weeks is more realistic.

Good luck!!

 

[LJS]

Thanks so much! I will bring all sorts of fun things for my son to do (books, ipad, etc). We have a great cafeteria that he loves so I'll likely run down and get him treats, although will definitely bring some with.

Our infusion center runs labs each time there is an infusion.

Do you do benadryl yourself OR ask the doc to include it in the infusions?

Great advice on keeping records of where the infusion is done, etc...
Our hospital (Children's Colorado) has a protocol where after the loading doses, the infusions are 1-1.5 hours.. but I'm sure it's all dependent on how the kids do.

My son (thankfully) has no overt crohns symptoms. his are: chronic inflammation and lack of growth, so hopefully doing remicade wont' START any symptoms.. one of my biggest fears.

 

[Jmrogers4]

We just did our 2nd loading dose last week, have the 3rd scheduled for next month on the 20th so 4 weeks later. We have not done any pre-meds and been fine. Jack usually brings book, laptop to watch movies or play games. Our experience was they started really slow and bumped up the speed every 15 minutes until/if they get to max speed which we did on first infusion with no problems. It has been about 3 hours for us each time as we have been able to get to max rate pretty quickly.
It was decided at last infusion not to do labs every time since Jack's labs always come back normal we will be doing them at every other infusion but GI generally does them with every infusion (apparently my child just needs to be different).
Like Mehita's son he is bouncing of the walls with energy until about 8:00pm (we have infusions done at 8:30am) and pretty much just crashes. He had a headache in the evening after the first one, but not the second one.
Jack has been the same symptom wise as your son no overt symptoms, simmering inflammation and lack of growth/appetite. The appetite hit the day after the first dose and has not stopped I can not tell you how thrilled I am to see him actually eating, he's gaining weight and I'm pretty sure growth will follow but then we are only 3 weeks in but I can honestly say it is a huge difference especially since we didn't consider him that bad off but we are all thrilled with results so far

 

[Mehita]

Our clinic gives Benedryl and Tylenol just before the infusion. I'm not sure if this will continue? Our nurse said if there is a reaction, it usually happens at the third or fourth infusion, so I'm all for T & B for awhile.

 

[Farmwife]

LJS I'm taking from this thread, just incase we do this drug instead of humira.

I hope all goes smoothly.


HUGS

 

[LJS]

It's interesting how so many hospitals differ in their treatment. I don't think my doc will prescribe and pre-meds for my son...but if he needs it, he'll get it there. I always use lidocaine on him (we call it numbing cream) and while I think it's more of a psychosomatic thing, that's ok! LOL

There are articles (which I cannot seem to access right now) about rapid infusions of remi in pediatric crohns and assuming all goes well with the 3 loading doses, by our 4th infusion, we will be on the rapid rate..

Jacquie, we seem to be living somewhat parallel lives - I'm so very glad that jack is doing so well. Austin's worried about gaining weight too quickly and becoming fat. I'm like, dude, your arms have a 2" diameter at their thickest, stop worrying..LOL

We were going to start on the 14th due to some scheduling conflicts next week but he doesn't want to start on Valentines' Day..LOL. So I called back and changed everything up a week. But then, his second loading dose is on the 21st but he tells me now he cannot miss school that day. He's on student council this year, LOVES it, and that day is the second day of 3 annual "Leap Awards" assemblies (our school gives special awards, 4 per class: Leadership, Effort, Always Safe, Positive Attitude). It's a big deal, student council is intricately involved, yada yada..so I moved it to Monday...trying to juggle life, kids, work (I'm also a single mom) is so very tricky!!

His first 3 infusions are at 11:30 so he'll get to go to school for 1 1/2 hours, then miss the rest of the day...

Thanks for all the advice! And jacquie I love hearing how well jack is doing!

 

[crohnsinct]

DD has been getting infusions for 2 years now. Started with slow and by the 7th they were at max speed so 1 1/2 hours and we are done. But add in time for the height and weight check, the "talk" about taking meds, how are you feeling and then the mixing and filling, blood draw etc. So all in all we are out of there in 2 1/2 tops but early on it was more like 4.

We started with pre-medicating but our doc stopped that saying they found it wasn't stopping the allergic reactions and they are watched so closely that it wasn't necessary. Good thing to because the fatigue from the Benedryl drove O nuts.

Second Mehita's suggestion of lots of water day before and day of. No caffeine day before or day of either as it is a diuretic and can make finding veins tough. Also interferes with blood draw. Once, O was so dehydrated nothing came out!

Good Luck. I hope this is your magic potion!

 

[LJS]

Thanks so much! i really have to remember to push water the day before and that morning. I always forget to do that morning of bloodwork and then son's veins are not as plump as they should be. No worries on caffeine, he drinks only water and milk! I'll be the one with the caffeine that day! Would like a glass of wine, but then again it will only be 11:30am..LOL

 

[crohnsinct]

Oops...one more thing...don't be scared if symptoms start returning before the next infusion date. It doesn't necessarily mean Remi isn't working. Remicade is metabolized and it could just simply have run out. For this reason you watch for symptoms and shorten interval or up dose etc. Don't get to comfortable with any one schedule...it changes. Remicade dosing and schedules were based on adult use of the drug and even other diseases way before they started using it with kids with Crohns. Kids metabolisms are much more active than adults. Kids disease it usually a bit more aggressive. Few kids at our center are on 8 week cycles. A lot of them are on the 10mg/kg dose.

 

[araceli]

Same in here. 2, 4, 6 and then 8. No benadryl or anything before infusion, she does not need it. Takes about 3 hours for the infusion plus 1/2 an hour after to check that everything is good. Labs every time before infusion. Things to watch out, Blood pressure, If infusion is to fast, it may go low or have a reaction. If allowed, food and drinks are a good idea. Computer, games, something to keep busy. Sending good vibes and hopefully works very good.

 

[Jmrogers4]

Yes they check vitals every 15 minutes at first, blood pressure, temperature. We have ours done at GI office so we get 1/2 appt. with GI usually pops his head in a couple of more time to see how things are going as well.
Jack is pretty funny talking about his "belly" given at 5'2" and 90lbs there wasn't one at 96lbs last infusion there is still no belly he just looks healthy and doesn't have to wear a belt cinched in on his "slim" pants.
He wants a 100 pound party with crab :yfaint: once he reaches 100.

 

[crohnsinct]

I wanna come to the 100 party!