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Time for Remicade

I think this is going to just be a rant to get it all out of my system, so bear with me :) I'm not sure I even have questions, I'm just thankful to have a place to go with all of this stress.

My son was dx'd with Crohns in 2011, had a bout w/ a perianal fistula, and started on Imuran in 2012. He did OK, with a few rounds of Entocort that had to be thrown in during some occasional/mild-ish flares.

Son is now in college, and over the last 6 months or so, it's clear that Imuran levels are no longer therapeutic. GI tried increasing the dosage in January, but my son got too many opportunistic infections at the higher dose. He's in college, and he just couldn't hold his own against the bacteria in the dorm room :)

So now that he's home from school, he looks/feels like hell. The colonoscopy today revealed that the inflammation is back and worse than ever. Now he's got severe colon involvement with all kinds of ulcerations, and I am just so worried, scared, depressed, etc....

I had really been pushing to stay away from Remicade - frankly because the side effects scared the crap out of me. We had been trying to keep him stable on the current treatment, also hoping to try a clinical trial with Qu Biologics for their SSI therapy, but we were waiting for him to be done with school. Now it is too late, and he requires immediate intervention.

I feel like I made a mistake. I feel like the decisions we made to avoid Remicade put us in the place where we have absolutely no other choice but Remicade. I feel like a jerk for being the one to suggest that we try to manage this "our way" because I feel responsible for putting my son in this really bad place.

So we're now going through the paperwork process with insurance so we can schedule his first infusion. Doc wants him on Remicade and Imuran - just what I spent two years avoiding. UGH.

I'm so seriously concerned and scared about the side effects. I am afraid to be too hopeful, in case it doesn't resolve things, but afraid not to be hopeful because if Remicade doesn't work, I have no idea what we will do. I just want so badly for this poor kid to have a normal life.

For some reason I thought that we could keep this under control, and it just now feels so out of control. Luckily my son is at that age where he just doesn't get excited/upset about much of anything, he just goes with the flow, but I'm kind of a wreck :)

Sorry for the diatribe and thanks for listening... If anyone has words of wisdom or anyone has been there/done that and has any reassuring words, it would be greatly appreciated.


Well-known member
You did nothing wrong! You did what every one of us would have done or did! You tried to limit the meds and it worked! It worked for 4 years! You saved him combo therapy for 4 years! That is something! I know we mothers always look at it as well I ended up where I was trying to avoid anyway. I did that with my O. We did 8 weeks of EEN and a very slow reintro to normal diet and in a year she had to add Mtx anyway. But I saved her a year! Glass half full! You could have gone on combo therapy and he still might have flared at this point and you would be out one drug as an option. So the way I see it you saved an option for a later date!

As for Remicade and risks...seriously, the risks of the thiopurines are way scarier to me than the biologics. We just had an appointment with our doc where he said all the recent research is pointing towards the biologics being the safest option.

You have already accepted the risks of the thiopurines...it isn't much different with the biologics. Maybe a small increase in the scary cancer risk but we are talking I think, 6 in 10,000 vs 4 in 10,000. As for increased infection etc, my daughter hasn't had any trouble what so ever over the past three years. She is seriously the healthiest person in the house.

O.K. so if I now freaked you out about the thiopurines, you can ask about switching to mtx with Remicade instead.

As for college...is there anyway you can ask for a single room for him given the infections he got last year? He will still have to share a bathroom which is where a lot of the germs probably are but at least he would have some separation.

I hope Remicade works great for him and you don't have to make another decision for a very long time.


Staff member
Hang in there!! Many of us tried to manage without biologics. I remember when we were discussing them for my older daughter (probably having the 700th conversation with her rheumatologist on the phone), her rheumatologist said "once you make the decision, you will never look back."

For us it has been so true. We are SO so grateful that biologics exist and they have made such a huge difference for my girls. My older daughter is living a normal life, and while my younger one is still a work in progress, I'm sure we will get her there.

We have had NO real side effects from biologics - some tiredness the day after Remicade infusions, but plenty of kids don't even have that. My younger daughter was on the Remicade/Imuran combination last year and even with Imuran she had no side effects besides some nausea when increasing the dose (which went away).

No increase in infections or anything with anti-TNFs or the combination. My older daughter is in a dorm room too (on Humira and MTX) and really has not gotten sick more than her roommates - in fact, she has been sick less than her roommates probably because she washes her hands more often!

Try not to beat yourself up. You just wanted what is best for your kiddo. Hopefully Remicade and Imuran will be his miracle.
My son, also a college student, has felt quite well on Remicade. He has so much more energy and has increased his weight some. We too had tried to avoid remicade but then got to a point where it seemed the best choice.

Sending hugs! These are not easy decisions.
DS has been on biologics since age 8
He is now 11 and on Humira
We spent a year trying to avoid remicade .
In the end he was miserable and remicade gave him his life back.
Gosh Theresad, I can relate to you completely as I feel guilty about, and revisit all my desicions on a daily basis. I too tried to keep him from upping the 6mp dose, from remicade, from steroids. Once they put him or remicade many things got better...his joints, his anemia and his inflamatory markers. Some things did not get better such as his energy level, his weight and his appetite. But I think the remi is doing its job, and the rest is still a mystery we are trying to work through. He just finished his first year in college at a dorm and did not have any problems. He found a great infusion center and goes to relax every 8 weeks. Now his taking remi is the least of my worries. I think it is natural to try to find more natural/safer ways to treat our kids...they have enough to worry about. For some it works and for others it doesn't, but it doesnt mean we shouldn't try. And we cannot simply follow everything the doctors tell us either, because let me tell you, they have made some big mistakes with us. So try to take it as a process. I am now trying to involve my son a little bit more regarding his treatment because it is a huge load to carry alone and they need to learn the ropes.

You have come to a great place to share and vent. We have to make these huge decisions for our kids and we try to do what we think is best at the time. Sometimes it is, and sometimes it isn't, but we have to let it go and move forward (I kept telling myself that all day yesterday!) Hang in there and vent away, and if you have any questions, ask here....you will get plenty of advice/support.
My son was on a number of different meds trying to hold off on the biologics/keep them in the back pocket and while he was never that bad on any of the other drugs we knew there was still something going on as he wasn't growing or gaining weight. We finally decided after 4 years as well (most of those on Imuran) that something had to be done and made the switch to remicade. His GI usually puts teen boys on the methotrexate/remicade combo but he had a reaction to methotrexate so we have gone with remicade alone for the last year and a half and it has worked wonders for him. He was anxious about remicade but says it's the best thing ever says he has never felt better in fact he didn't realize he felt bad because that was normal until he wasn't feeling those things anymore.
Do I wish we had started sooner now sure but I think that was the journey we had to take so that we were all comfortable with our decision. We have 2 more years until college but he's already thinking about his remicade infusions and how/where he will get them while at college.
Feel free to vent anytime! We've all been there and needed someplace with people who get it.
Thank you all so much for the support and the perspective. It means the world to be able to have people who understand EXACTLY what you're going through. I'm having a hard time keeping my mind from racing ahead to the future, worried about all the uncertainties and unknowns. I guess that's just life, but somehow this disease sort of personifies it and it gets really scary.

@crohnsinct, thanks for your calming perspective :) and i will talk to the GI about MTX combo options, thanks for the guidance.
@maya142 and @xmdmom, your posts gives me so much hope, thank you so much for responding :)
@Mr. chicken, not only did your handle make me smile for the first time today, but your practical point of view helped me get a grip :)
@awmom, i want to give you a hug - my heart goes out to you to, and reminds me that we are not alone on this journey and there are people that truly understand what we're all going through. Your post reflects almost exactly what is in my own head, and I cannot thank you enough for your kind and thoughtful words. And I think involving our kids in their own care as they get older is very important to remember - we want to protect them, but they do need to find the same strength to manage and make decisions on their own. I do believe our kids are stronger than we know.
@jmrogers4 - thanks for sharing your experience and for your supporting words and mostly for sharing your son's perspective - he sounds like he is very strong and independent!

You all are amazing, and I really can't thank you enough for taking the time to help me through a very rough day. I will keep the faith, and we will all keep moving forward. :)
I recently started Remicade and it pretty much immediately put an end to a very nasty flare and I am feeling much better.

At the time I was also concerned about side effects but it is important to remember the most serious side effects are very rare. I spoke with my IBD nurse about Lymphoma for example and she said she had never seen a single case in over a decade of treating hundreds and hundreds of patients with Remicade. Also I'm sure your GI will be keeping a good eye on your son with bloods etc.
Hugs and welcome.
My 6 year old is on Remicade and doing a lot better.
It was one of the toughest choices put my dearest daughter on these drugs.
It came down to quality of life for her.
She was bound to the bathroom, couch, my arms or her strollers ( she has arthritis also).
I realized she needed a better quality and Remicade has given her that!

Please keep us updated!
Hi, sorry to hear about your son. I also tried to avoid the meds for a few months until my son ended up with a fistula/abscess and needed surgery. Had to give in and he has been on mercaptopurine for over two years.
We haven't used Remicade but out of all the meds this is the one I have heard the most positive results and I would be happy to try if we had to. Hope it works great to get your son into remission!

Just wanted to say - we were scared too of remicade and everything it entails but the benefits currently outweigh the side effects and he is doing ok. You can only make the decision at the moment in time and hindsight is irrelevant. Good luck
Just wanted to add more hugs. Try not to beat yourself up too much. We're not there yet with biologics but I'm sure one day we will be. I know exactly how you feel. Hang in there.
Theresad, we just had a GI appt today and it looks like we may be boarding the Remicade train too. I feel your pain. We have been given a few options, which I will ask questions about in a new thread, but I think Remicade is the most reasonable choice for us. Like you, the risks are scaring me. Keep me posted on your son is doing and what treatment decisions you make.
@Crohn'sKidMom, I will keep you posted, and will look for your questions (I probably have the same ones :)) Thank you!
It looks like all the paperwork is in motion and the nurse thinks we'll be able to schedule the first infusion on Monday first thing in the AM.

Thank heaven for BCBS who were so helpful. Getting this drug was a little more complex than I actually expected....

I'm keeping my fingers crossed that everything will stay on track and that this potion will actually work for him. I'm nervous :)


Staff member
Seems I've missed this entire thread :eek:

As you can see, we've all been in the same boat, riding the same awful waves! Do not ever believe you've made the wrong decision... we've all made the best decisions possible with the available information. We all try to avoid the scariest medications; when given various treatment options, who wouldn't opt for the least scariest?!?! It seems few of the medications work forever with crohns, so whichever med we all start off with, chances are we'll be changing to a new one eventually. :( Certainly isn't a mistake to start with A and eventually move to B, it's simply a part of crohns.

But, having said all this, it was certainly a tough nut to swallow when my son's GI recommended remicade. At the time, my son had only been on enteral nutrition as a treatment for two years, he looked great, felt great... unfortunately, MREs told a different story. Very tough to agree to add remicade when, as far as I could see, all was good. :eek: But now, two years later, recent scopes and bloodwork show no inflammation!

So far, all has gone well with remicade. He hasn't been sick any more often than before remicade (aside from a rash last year and the current skin irritation). In fact, one of his roommates had to leave school last year because of mono and S was completely fine. We did need to tighten up his infusions, to every six weeks instead of every 8 weeks but, aside from that, there have been no real glitches.

He takes his iphone/ipad to his infusions but, really, most of the time he just sleeps. He feels completely fine afterward... has left infusion and gone straight to a friend's place or even to the gym (although, I do think he was a bit tired after the first couple of infusions).

Good luck on Monday! :ghug:
It is a little scary the first time, and it may take a little longer than it will subsequently because they usually start at a fairly slow drip to check for reactions. N used to get his infusion and go to school from there. He is always a little more tired the following day which is why we made the appointments for Fridays during the school year. This past year (1st year in college) we found an infusion center close to campus and I think he actually enjoys going and taking a break from everything!!!! I hope remi brings your son into remission and that all goes well on Monday!! Let us know how it goes.
At my clinic the first five infliximab infusions are given over 2 hours. The next 5 infusions are given over an hour. After that, if you are tolerating the medication well, its a 30 minute infusion.
Thanks everyone! It's such a benefit to hear all your experiences and get all the insider information/tips from people who have been there/done that. I feel almost prepared :)
My 22 month old son will also be starting remicade on Monday. I am scared too, but he has been on prednisone, 6mp, balsalazide, and iron. This is our third stay in the hospital and third blood transfusion. I think the benefits out weigh the risks. I worry about the developmental problems and him being so young.

I am thankful I found this forum because I am the strong parent, but I feel as if I am starting to lose it a little. All the posts also make me a little more confident going into this.
Ethan's mom, I'm sorry to hear your little guy is sick and needing Remicade. I hope he has good success with it though. My son is going to start Remicade soon too, but he is 10. Hang in there!

Theresad, glad things are in motion for Remicade. We still need to have my son tested for latent Tb first. We tried at a clinic last week, but he had a meltdown. I ended up having one too. We are now waiting to see a pediactric nurse to have the test done. Our tentative first infusion date is Jul 16, but I think that might get pushed further away if we don't get that test rescheduled soon.

Keep us posted on how your son does. I hope it works well for him!
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@ethansmom - i"m so sorry about your son. he's so young, that must be so tough on all of you. sending support your way!

@crohnskidmom, I hope all goes well for the TB test (maybe you just need the right nurse :)) and keep me posted on how things move along for you too.
My son, 16, started Remicade October 2014. I was VERY nervous about it. I tried to fight and not do it. Yes, it's a pain. Yes, it's EXPENSIVE. But he has been doing very well with no other medications at all. I know it is very hard. I cried and cried. But really we had no choice. I think your son will feel much better after he tries it. And you will probably feel better as well.
Update -

First infusion done! No reactions, one small issue with the IV connector so that had to be replaced mid-process, but otherwise very smooth. He just hung out, played games on his phone, and seemed totally fine through the whole thing. He seemed gung ho about this next step, and I think he's hopeful for improvement - maybe something about taking some kind of definitive action that is contributing to his unusually positive mindset.

It took 3 hours - the infusion nurse said that they "slow drip" everyone, even the veterans, so that will be the standard protocol.

About an hour in, he said he was hungry (what?) so I went over to the main hospital to get him a breakfast sandwich. This kid has had zero appetite for a year, so that was shocking in a good way. He didn't have any of his usual morning poop issues, and when he got home, he said it "had some form to it" which is another thing I haven't heard since I can't even remember.

I'm not sure how much of that is placebo effect, but I will take the positive attitude!

He still has an issue with a secondary inflammation behind his ear - they thought it was an infected cyst, but the attending thinks now that it might be folliculitis, so we will have that checked out by the dermatologist and hopefully get it under control.

Next loading dose in 2 weeks, but all seems well at this time!

Thank you ALL for your support on this, and I hope this is the start of something good around here for a change. Only time will tell but today was a good day.


Well-known member
We get folliculitis around here regularly. We just wash with Hibiclens to stop the staph from spreading and that seems to arrest it pretty quickly. Bu for sure get it looked at to make sure that is what it is and they may even prescribe something for it. Our has never been that bad.

Glad the infusion went well and that he seems to be feeling better.
Thank you all for the kind wishes. Ethan had his first infusion also. It all went well and took a little over 2 hours. I very happy to say I have not seen any bloody stools since. Just keeping my fingers crossed. I hope everyone finds the right treatment for what their children are going through.
So happy to hear your good reports theresad and lil trooper. You must be walking on cloud 9! I hope I have similar news to share shortly.

Keep us posted on how the future infusions go. So far it sounds very encouraging!

Ethan seems too have more energy, but he is still stooling too much. Especially since he is on TPN. He has no input, so he shouldn't be having so much output.

He will get a second dose of remicade today. Hopefully if all goes well he will stop stooling so much. Then he will go back to solids. If he is still not stooling so much with solids, we can then go home.

On the other hand, if there is no response to the second dose, we will be going to Philadelphia children's hospital. I guess they have more expertise in the really young kids with PUC. Also, there will be an immunologist and geneticist coming by the hospital to see Ethan this week.

I just pray he responds to this second dose. Hope everyone is doing well.


Well-known member
:ghug:Ethan's mom. My oldest daughter did not experience the immediate relief that others got with Remicade. There was a little improvement with each infusion but it took her a full 6 months to finally say she felt like she was finally feeling better and Remicade needed some help from EEN and/or immunomodulators.

Is he still on prednisone?

Hang in there! I will be praying things get easier for you but it sounds like you are on the right track with the added consults.
That is such good news Theresad!! Glad everything went well and hope it's the beginning of a long remission. I can imagine how relieved you must be and your son as well!!! Keep us posted.

Ethan's Mom - wishing you the best...hope the second dose helps!!!


Staff member
Ethan'sMom- my daughter also did not improve till the 4th infusion. We saw a tiny bit of improvement after the second infusion but it wasn't till after the 4th that we saw significant improvement. Hang in there!
Ethan is still on prednisone, but is being slowly weaned off of it. He seems to be a little better, but each time I think that way something comes up. I am so hopeful that this 2nd dose is effective. This morning he will have an upper GI follow-through to see if he is still inflamed.

Still got my fingers crossed. Thank you for all of the support. It really helps knowing I am not the only parent going through this.
Sbft is very old school and lots of radiation (15 plus X-rays )
Is there a reason they are not doing an mre ??? To check inflammation .
My understanding is that he is so young they don't want to put him out to do it. They are making sure again that he does not have crohn's. The endoscopy does not go far enough into the small bowel. I guess just making sure it is confined in the colon.

It is exhausting and I'm not the one being poked and prodded. For all of the parents that have been going through this for a while, I take my hat off to you. You are some of the strongest people I know.
Ethan's Mom--YES it is so exhausting at first, especially when your child is in the hospital. And I can only imagine that it is even harder when your child is so young. Everyone here told me that the first 6 months would be the hardest, and they were right. Hang in there, and once you get a good treatment plan in place, and once the medicines have a chance to start working (which can take a while, as you've seen), it will get easier.

I don't know about you, but I sleep terribly in the hospital, and I'm such a basket case when I'm tired. After a while, my husband and I started trading off shifts at the hospital, so that we could each get a good night's sleep every other night, and that helped. Try to give yourself some time off, if you possibly can.
My son has had his preliminary tests completed, the results are negative, so we are boarding the Remicade train now too. Our first infusion date is Jul 16, then Jul 23, and Aug 25. Nervous and optimistic all at once....

Ethan's mom, i hope things improve quickly for your family. And just FYI, while my son was waiting for his MRE in May, a mom with a 9 month old baby was waiting for one as well. The mom said they were going to sedate her baby, but it was a light sedation, just so she would stay still. They had their MRE before us, and when they came out that baby was bouncing all over the place. It must've been a very light sedation indeed! Maybe it would be an option for your child?
@ethansmom I hope all goes well and that tests go smoothly and your son responds well. thinking of you.

@crohnskidmom - good luck as you start up on remicade. i am really pulling for you and your son. my son has his second dose on 7/21 so we will be right there with you!
It was a long day at the hospital, but our first Remicade treatment is completed. My son handled it well, and so far no side effects, other than being a bit tired and a little pale. I was feeling anxious, so I am glad to have this day behind us. Round two next week!
@crohnskidmom - I'm so glad your son did well. Here's hoping the Remicade starts to do its thing!! Let me know how it's going, and I'll be thinking of you guys!
Round 2 of Remicade finished. He was tired and crabby because he decided to stay up late :) so that was fun. When we got home, my son reported a "solid poo" - which was great news - cant believe these are the things that make me happy these days. His appetite is definitely improving and he is looking less pale. The GI said it's going to be awhile before the inflammation really starts to repair, so he doesn't want to get too excited in the loading phase, but he's optimistic about the positive signs.

So things are going as well as we can hope and I'm so relieved that he's finally getting some relief. Yay!


Well-known member
Theresad: Glad things are going well and in a positive direction.

Now I am not saying this is definitely going to happen BUT it isn't uncommon for the kids to do well during the loading doses which are spaced close together but then for the fourth dose when they are trying to go to 8 weeks for the first time to have a few blips. Many kids can not make it to the full 8 weeks and require a tighter schedule. Unfortunately, the only way to figure that out is to try. So you try and if symptoms return call doc and make the call as to whether to tighten the schedule or up the dose or both. It took us a good 6 months to work out the dose and schedule that worked for O and even after that we often changed things up a bit. Remicade is an extremely flexible drug so it is an easy fix but I tell you this just so you are prepared should it happen.


Staff member
So glad all signs are pointing to good results from remicade!! :D (And, yep, I can totally relate to the crankiness after a late night! :ack:)

Just one thing to add re crohnsinct's comment about not making it to the 8 week mark... it does take some trial and error but, if you do see symptoms begin to return (or even if they don't disappear after a reasonable time on remicade), you can have remicade levels checked. Some people metabolize the drug quicker, leaving them with no remicade in their system for a week or two, etc. The prometheus test can check serum levels. It's usually done immediately before the 'next' infusion to see if there is still any remicade present. My son had his three loading doses and began on the usual 8 week cycle. His GI ran the prometheus test the day before his first 8 week infusion and results showed no remicade left in his system. He was then moved to a six week cycle and retested (levels good at 6 weeks).

Thing is, many insurance companies do not cover the prometheus test and it can be quite expensive - so generally not a 'run of the mill' type blood test.

So, again, just something to keep in mind IF there's ever a question of remicade's efficacy. :)
Really glad things are improving Theresad....so much relief comes from seeing them feel better!! I hope the remi works wonders. Summertime was the perfect time to start this and hopefully he will be back in full swing as school starts.
Thanks all for the advice on maintenance - that's a really good thing to know. We'll make sure to keep an eye out after loading to make sure we have the right cycle. That should be fun with a kid who is always a little short on the details :) I'll make sure I know what tests they'll be running to check metabolites and this will be another opportunity for DS to be more aware of his symptoms, and also create a closer one-on-one relationship with the GI!
Glad things are going well so far, theresad. I appreciate this info too, since we seem to be following the same path as you! You mentioned your son was a bit crabby. Was it the day following the infusion? Mine was wayyyy crabby the day after his first infusion. I am so hoping it was due to stress or being tired, and not a Remicade related thing. Infusion #2 was today for us, so we'll see what tomorrow brings. My son's symptoms really haven't diminished yet, but his ESR did go from 30 prior to the first infusion to 5 today, so we are super excited about that. Keep me posted on how your son gets along. I'm rooting for you!
@crohnskidmom - he was really cranky the day of the infusion - I attributed that to him staying up to late. But now he's actually been super tired ever since, whereas after infusion 1 he seemed to feel better the next day. So I don't really know what's going on, and will just be keeping an eye on him. I think when kids are tired, they get cranky so I'm thinking its wiping him out a bit. That's what I'm hoping....He's been eating a lot more, his poop is better, and is finally getting some color in his face. We don't get labs until next time so no idea what's happening inside :)

That's awesome about your son's ESR as that tells more than the subjective stuff. I hope symptom relief comes right behind that for you. Rooting for you guys too!!!


Staff member
It took my daughter quite a while too to feel better. She saw some improvement after the second infusion but it really took 4 infusions till things really turned around. We had to move to 4-5 weekly infusions too.
Fwiw my daughter always got very exhausted the day after the infusion. The nurses at the hospital said that does seem to happen to some kids.

Hang in there - hope both your boys feel better soon!
Thanks @maya142 - and that's exactly what our GI said too - it will take until the maintenance doses start to really get progress. So we will try be patient ;) it's hard, isn't it? I was hoping he wasn't going to get that wiped out thing going - I guess it might be too early to tell anything - this has to be such an adjustment for his body so we will just try to take it as it comes. Thanks for your support!


Staff member
I think a lot of these meds take a bit of time for their bodies to adjust. And, also as his body works through the healing process, I'm sure he'll feel better and better! :ghug: But, it would be nice to see it NOW! :)


Super Moderator
Hey theresad, :ghug:

So fab to read these positive updates! I so hope it continues that way for your lad and Remicade proves to be his long and lasting miracle drug! Sending you much love, luck and well wishes that it proves to be that way. :Karl:

In my thoughts.
Dusty. xxx