Newbie - Son starting Remicade on Tuesday, need advice

After my first flare up, I remember my GI recommending Remicade. Before I started Remicade, I was on prednisone. Whenever I flare up I usually have to go back on high doses of steroids to stop symptoms. The purpose of meds like Remicade is to be able to get off of medication with lots of side effects, like prednisone. It's ideal is to go into remission while on something like Remicade.

My infusions lasted about 2 hours and they give you Benadryl/Tylonel before the infusion starts and that made me really sleepy. I'd recommend bringing a book or some music, but for the most part I just slept. Other than that there aren't much side effects from Remicade, atleast there wasn't for me. I also found that after my infusion was done, I was super hungry/tired. I developed antibodies to Remicade so I'm not on it anymore.

Having no appetite is completely normal while having flare ups. For me, I was just too tired and in pain all the time that I didn't want to eat at all. Try to keep him hydrated even if it's hard for him, it'll help a lot. You may want to check out the BRAT (bananas, rice, applesauce, toast) diet, I think it has helped many people. It's a good start to lower intake of inflammatory foods, but for the most part you'll have to experiment and see what works for you. They are bland foods and contain low levels of insoluble fiber and residue, making them easier on an upset stomach.

I just turned 17 this month and I know what your son is going through. I was diagnosed around 2 years ago and I've had lots of ups and downs. If he ever needs someone to talk to, I'll be glad to hep. Best of luck.

Post Edited (yellowcolon) : 6/25/2016 8:35:57 AM (GMT-6)

Remicade is the only uc medication to put my uc into remission. I've been in remission for 1.5 years now. I had a small improvement a week after my second infusion, a much bigger improvement a week after my third infusion. And small, steady improvements thereafter until I reached remission. I hope it works as well for your son, as it did for me.

The infusions are long 2-3 hours, boring so bring activities like a book, ipad, etc. They weigh you (weight-dosed medication), give you Tylenol and an antihistamine (either claritin or benadryl) as pre-medications. The nurse gives a small needle-prick and sets the IV and mixes remicade into the iv bag. You wait, the nurse periodically checks temperature and blood pressure. They remove the iv, put a bandaid on and you go home. No pain or sensation other than the needle.

It's common to add remicade to your existing medications until you see an improvement/response to the remicade. All new medications take a while to work, and during that interim you remove nothing. Afterwards, other medications can be reduced.

Having zero appetite is common when flaring. Your abdomen is quite sore, you have pains, and food tastes bland no matter what it is. A heat pad or hot water bottle helps temporarily relieves some of it. I ate only a little here and there, nothing big all at once, even ice cream (which I love) I barely touched. There's a psychological component as well, the more I eat the more that I'll poop later and it hurts to poop. A large meal is uncomfortable on the gut, inflamed = sensitive, and a big weight over the intestine is uncomfortable. Smaller, more frequent meals or snacks are better. Broths, bland nonspicy things like chicken, rice, and potatoes are good things to have. Raw foods take longer to digest, not recommended with a fast-transit time typical of flare that would pass them as undigested foods.

my first thought is that it sucks to have uc, but at 16 it really sucks !

second, no more c-scopes for a while - why so many ?

3rd, ya hang on to the current meds till the remi kicks in -

what was his diet like be his dx ? imo, pediasure is junk food -

I think the remicade is a good idea, the 5ASA meds are safe and I see no reason to go off of them
he should probably stay on the uceris till he starts remicade. at that point he can hopefully taper it as quickly as possible

no appetite is normal, especially if he has constipation. are you sure there is no motility issues?

as he heals his appetite should hopefully return. meanwhile try to pack in the calories into what he eats. ensure/boost are theoretically good except they contain carrageenan, which induces bleeding in some of us.

you can make your own shakes using whole milk (or lactaid milk) peanut butter, raw (Pasteurized!)egg, good quality ice cream(lactaid makes if dairy is an issue). this is full of protein and fat (look for ice cream that is carrageenan free if possible) can also use frozen yogurt or greek yogurt...

if fructose does not bother him he can also drink some juice instead of water to gain weight (this is not giving much nutrition, rather empty calories)

I was on asacol and maybe prednisone when I started remicade. I'm not positive about the pred. I had immediate results with my UC cramps going away after the first infusion and subsequently getting better after each of the loading dose infusions. I don't remember how long I stayed on the asacol but it was at least a year. My GI doc told me that it was ok to stop taking it cold turkey whenever I was comfortable doing so. It was a crutch for me even though it wasn't working that well. I stopped it a few months after that and did very well.

My only side effect was a pretty bad headache but only during the loading doses. I've been on remicade since 2009 and I don't take any pre-meds such as Benadryl or tylenol. I'm also not on an immunomodulator. My GI that started me on remicade never mentioned it and I was unaware. I now see an academic GI and asked him about it. He said it wasn't necessary.

Good luck to your son and make sure he brings his own earbuds in case someone is watching their TV too loud or is a loud talker, lol.

Can you please look at either FMT or LDN before remicade. Those are safer than remicade.