Remicadee question ?

[Jane and Nick]

Hi,
I have a tricky situation and wanted to seek your advice.

Providing our second opinion in Singapore on the 3rd also recommends Remicade, we have to wait until the beginning of April to start due to updating his TB vaccination. Nicks school has a mandatory trip that they call Malaysia week and the whole of middle school go either to one of 8 ocean sites or 10 jungle sites. Sunday until Thursday, they mix all the grades and they do wonderful activities. You get to pick the degree of comfort red light being camping on the beach, digging your own latrines and cooking for your self, green light staying in a resort and less physical activities. Nick got his first choice and is SO excited about going. He is staying in a resort (with toilets and indoor plumbing) but snorkelling, kayaking and trekking (short treks). It's a 7 hour bus ride +'a 40min ferry from KL.

I want him to go, but I have the following issue.

A - start him on Remicade on the 11th then monitor him for reactions, he would go on his trip on the 20th then be back on the 24th and his next loading dose on the 25th
Or
B - keep him on steroids and let him put up with his flare and don't start the Remicadee until he gets home ?

If he is going to get a reaction would it show up during the first week ? Or could it literally be anytime during the first few infusions. I so want him to feel better and enjoy his trip but am terrified of reactions and him being so far away.

I think if I take this away from him he will be so sad and our kids deserve to be able to live their lives. All your experience and opinions would be appreciated. My GI doesn't really have an opinion either way !

Jane

 

[theOcean]

Reaction-time varies -- generally they monitor you only a few hours, give you saline after to make sure you're okay, or at least that was my experience.

I did actually get allergic reactions within 24-hours of my infusions, but they were all skin-related. I would get eczema all over my cheeks, and hives and other manifestations on my skin. If you are really afraid about allergic reactions, you can ask to get it administered with a antihistamine, or with an antihistamine AND a steroid for good measure. With that combination before my infusions, even I wouldn't get reactions and I was severely allergic.

 

[my little penguin]

Steriods and antihistamines reduce the likelihood and possible severity of a reaction but can not stop one from happening or from anaphylactic shock happening.
DS had both plus multiple other allergy meds and still managed to react.
Most of the severe reactions tend to happen with 2 hours of giving the meds but you can have delayed reactions up to 2 weeks after giving the meds.
Delayed reactions tend to be milder( skin etc).
DS had skin stuff start about twenty four hours after his first infusions.
His allergic reactions to remicade started around 7 months into remicade and were while we were at the infusion center .

 

[Jane and Nick]

Thank you so much for your insight, wish each child's came with an instruction booklet a crystal ball and a cure.
X

 

[polly13]

Lucy's reactions to remicade were during the infusion so I guess everybody is different

 

[CrohnsKidMom]

Hi Jane, Whatever you decide I would also want to know what the school's protocol is for medical issues that might come during the trip. Is there a school nurse going on the trip that can keep an eye on Nick?

 

[Mehita]

That's really a tough decision. My son has had four doses now with no reactions and he was ready to move mountains just hours after his first dose.

Maybe I misread, but is he able to start Remicade and stay on pred, at least for the duration of the trip?

 

[Tesscorm]

These decisions are so tough.

Can you check with the resort and find out if they have any medical staff onsite (just remembering a friend was sick while away last year and resort had a nurse onsite to assist). Also, perhaps find out the closest hospital and then provide the teacher with info of reaction signs/symptoms plus the location of the nearest hospital.

It sounds like a wonderful experience for him!

 

[Jane and Nick]

Hi,
Those are all really good ideas. I will meet with the coordinator of the trip tomorrow. The school nurse accompanies one of the trips but she usually goes on which ever trip has students that need serious medical supervision, mind you I don't know of any other than a couple of diabetic students. OMG we may actually be classed as that student :yrolleyes:
I wonder if he could stay on the pred while starting the Remicadee ? We don't seem to be able to get lower than 20 for now. I just presumed they would continue the taper and we would still be using it but in a lower dose.
I think I am leaning towards starting the Remicade (spelt it right this time:ybatty and hoping for the best.
Mind you I will probably change my mind twice before I finish my cup of tea. Thank you for all your support.
X

 

[my little penguin]

DS started to taper pred at his first infusion.
He was off of pred by his third or fourth infusion.

Good luck

 

[Ktomakin]

My son was almost 4 years old when he started on Remicade its been 3 1/2 years since he started on it. He never had a reaction to the medicine, and was feeling sooo much better within hours of his first infusion. I know every child is different. That trip sounds amazing, and hope he gets to fully experience it. Good luck!

 

[SupportiveMom]

Everyone has given great advice, not much to add here, except D's reactions were within the 24 hour time frame. I considered us home free if after 48 hours no reaction. Most of her reactions were within hours. When she went into anaphylaxis shock it happened about 1.5 hours into her infusion and that was with mega preload meds, and we all suspected it was going to happen. If it is going to happen you will know it. Nothing mild or slow about that type of reaction and they come on suddenly. If I was in your shoes and my kid didn't have a reaction after 48 hours I would send them on the trip.

What a great experience! I hope he has a great time.

 

[Patricia56]

If your son has been on prednisone more than a couple weeks he will still be on it when he starts remicade, especially if he is prednisone-dependent (it sounds like he is).

I would wait if it were me I think but you must do what you think best.

The main worry I would have would be him starting an infection due to a scrape or cut. With both prednisone and remicade on board he would be pretty immune suppressed. Iff there is no one to specifically check him for that kind of thing or to check his temperature regularly if it seemed warranted I would be very hesitant to start Remicade first. Delaying it by only a few days is not going to make that big a deal in the long run.