Remicade antibodies test??

[my little penguin]

Has anyone had the Remicade antibodies test done before starting remicade?
they are checking his HACA levels?
How long does it usually take to get results?
Was it predictive at all if your child later developed antibodies ?

:sign0085:

 

[Coltyn'sfamily]

Hi!
My son has had all those tests. But after he started the remicade. They found that he was making anti-bodies toward the remicade. I'm not sure that they would have known before. The results take a week or so. The remicade worked great on his Crohn's but he was in a lot of pain from the RA and Lupus that he developed because of it. Now they want to start him on Humira. and I dont know that we want to go that route. But having the HACA tests and all the rest of the crazy tests they have given him has helped us make decisions about his care.

Good luck! It's nice to know were not alone!

 

[Jenn]

I'm not sure, actually. We enrolled in a study for Remicade and they might've tested it before he started, but I don't actually know. His GI didn't until he started losing weight and feeling bad and we found he was building antibodies to Remicade. He had no issues with Remicade while on it. We made the switch to Humira and it's been going great so far.

 

[Coltyn'sfamily]

Hi Jenn! So you have him on Humira??? I have soooo many questions for you!! Like ... how long have you been on it? what were your side effects from the remicade? What has your drs said about the humira side effects? I know this is crazy... but were really scared of the humira for some reason and we know no one his age, that is a boy, who is on it!
Coltyn had a reaction to the remicade instantly. Even tho it worked on the Crohns, it gave him the drug induced Lupus. bad leg pains, we found he has RA. tired... blah blah blah you know the spiel!
We don't have much time to decide. He's on his last taper of pred and starting to feel symptoms again. Drs want to start him at the end of the month.
Thanks!

 

[nani]

Hi I'm a new member and am concerned about my 6 year old grandson who was diagnosed with Chrohns last year was doing well up until a month ago when he got an abscess. He had surgery for it but developed another one last week. He had another surgery and now the dr wants to put him on Remicade. He has been taking pentasa all along and they will keep him on it, How old is Coltyn? What kind of reaction did he have with Remicade?

 

[Coltyn'sfamily]

Hi, nani!
Coltyn is 12. He started remicade in January. It made him sick and with A LOT of pain in the beginning, but he ended up with really bad joint and back pain, dizzy, extremely tired to the point he couldnt walk, he developed Lupus and HACA antibodies and thats when they felt like it was time to stop. For some reason the remicade levels wouldn't stay up in him. they did tons of tests to try to find out why and ended up doubling the dose. with no avail.
I will have to say that his drs haven't seen this is someone so quickly. This started with the first infusion. And it went rapidly. He is the first one that this has happened to with these drs. They took him off and put him on Methotrexate. He only had one shot and he was having really bad bloody noses. So he's only been on pred for the last month. He's on his taper and they want to start Humira.

He had a very unusual reaction to the remi. No cancer tho. If it wasnt for the side effects he would still be on it. It REALLY helped the Crohn's. And we enjoyed our son when his side effects didn't take over. He wasn't having any belly aches and that was a huge step. One day he asked his dad to race him to the store, that was a good day! It was only about 50 feet, but he ran nonetheless!

Again, his reaction was very unusual. Remicade is a good drug and has had a lot of success.

Ultimately, this is your decision. We are in a similar boat with Humira. Since hes had all these weird side effects to these meds, we are a little concerned. and still looking for info!
We will be praying for you!

 

[nani]

Thanks-its good to hear from someone else who's been through this. My son and daughter-in-law have a long way to go with little Finn. He is a trooper though and hopefully will find something that works. It sounds like a powerful drug so I'm afraid of the side effects he might have. I hope Coltyn finds something that works for him too. Its so hard to watch them suffer-especially when they are so young. Does he miss a lot of school?

 

[crohnsinct]

Hi Nani - my 12 year old daughter has been on Remicade since 2/2/12. She rather likes infusion days. Misses school, gets doted on for 2+ hours (they watch the kiddies very carefully for reactions), big comfy chair, movies etc. She has had no adverse reaction to the Remicade. She is tired afterward but I think that is from the Zyrtec they give her to counteract possible infusion reaction The cancer probability they throw at you is scary...something like double the risk of a non remi person but really that just boils down to 2 in 10,000 vs. 1 in 10,000 so for us quality of life was the main issue we went with it. We were also concerned with lowered immune system but have to say that the flu, strep throat and a big stomach virus has been through our house since she started on Remicade and she was the only one who didn't get any of it!

In the end while she is responding to Remicade she is not all the way better and our doc said we needed to add something else to support the Remicade. We decided to add Enteral Nutrition. My daughter has a friend on Pentasa and Remicade and she is doing great.

These decisions are never easy and I hope your family finds something that works!

 

[Coltyn'sfamily]

Poor Coltyn doesn't miss any school because he's home schooled! Yep! While he's was getting infusions he did homework!! There are days we don't do school because he feels crummy but we just pick it up on a day were off.

 

[crohnsinct]

:rof:Mean mommy! Does the infusion center at least have a yummy cafe so he gets a treat? O loves the turkey wraps at ours. Unfortunately she is on EN now so comfy chair and movie will have to do. O says they should add mani/pedi service since she has to sit there for so long...oh and yes add a massage chair.

 

[Coltyn'sfamily]

OH YEAH!! That kid is spoiled ROTTEN when he's there. They gave him anything he wanted! They even made a special trip to the cafe to give him skittles because they didn't have them on hand!

We are really fortunate that Coltyn has a sense of humor and is a ladies man! He eats this attention up!

You need to bring her fave polish and go to town on her toes! That would be a great thing for a girl scout troop or a bunch of moms to do for them! Coltyn plays his computer.

 

[Jenn]

These are really powerful drugs and have some serious and scary side effects, but IBD is also a very serious illness. For me right now, the reward outweighs the risks. But every decision is so hard to make.

Remicade is made with mouse protein, so people do tend to have worse reactions with it. So sorry to hear it exposed other autoimmune problems in your son Coltyn. My son Alex is 10 and had no reactions or side effects. His energy, color, personality all came back, it was a miracle, but just stopped working as his body learned to fight it too. I think in general, Humira is only considered for kids so far that have failed Remicade. He's been on it about 4 months and so far so good. Only side effects are a prickly, itchy rash at the injection site. And his psoriasis rashes are a bit more frequent, but respond to a steroid oil. I give him the sub-q shots, which really hurt, but it only takes a minute and his leg is only sore for about 10 min. We use the syringe and ice up beforehand, it's every other week. The infusion lab and nurses were great to him too, but still was a huge time-suck. I think Humira seems scarier because I hear those darn commercials for it all the time, with all the horrible possible side effects!

A lot of people on here are proponents of EN - tube feeding. We haven't tried it (yet), but it might be a really good choice for your son since he's had bad reactions to medication and is home-schooled.

 

[Jenn]

@nani - Remicade can specifically help heal and close fistulizing abscesses, so it's probably a good choice for your grandson. My son was given both tylenol and benadryl before each infusion to hold off a possible reaction.

 

[izzi'smom]

MLP...you don't create the antibodies until after being exposed to the Remi, from what I understand. HTH!

 

[my little penguin]

DS is highly atopic and has produced antibodies to other things he has not been exposed to yet. The GI is just being overly cautious in our case since remicade can cause anaphylaxis and DS has already proven his body "knows" how to do that.

I just was wondering if anyone else had a similar experience. Guess not.
oh well.
Talked to nurse today who made it sound like GI was moving closer to deciding to use Remicade. DS's RAST test for mouse protein was neg as was his TB test.
:shifty:

 

[Sascot]

Well good luck with whatever the GI decides! At least you know they will keep a close eye on him if they decide on the Remi. Hoping they manage to find better treatments/cure within our kids lifetime!

 

[nani]

Thank you all for your encouragement. We've only just begun this long road but hopeful we'll have a good outcome. Finn had surgery on Wednesday to drain the access (2nd time in 3the weeks- I was with him yesterday and he wasn't feeling too good. He was complaining of some pain just unders rib cage and just lied down on the couch all day .so unlike him. Is this normal? He had a slight temp 101. My heart brakes seeing him like this