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Success stories with Remicade?

Who has a success story with Remicade? It seems like some have success for a time and then rashes and other side effects begin to occur.

I read that it only had a 30% chance of working. Is that not correct?

My son's GI wants to hold off on biologics, for now. I can tell he doesn't like them.
 

Cat-a-Tonic

Super Moderator
Hi Lenny, I've moved this post into its own thread so that it doesn't get lost in the other thread or derail that thread. Hopefully you'll get some good answers here. Thank you!
 

Tesscorm

Moderator
Staff member
My son has been on remicade for two years now. So far, (and he just had a follow-up scope a couple of weeks ago...) remicade is working very well.

He doesn't get sick any more often than anyone else. Actually had a roommate diagnosed with mono last year but my son was fine. He did have strep later in the year but didn't seem to have it any worse than usual (strep) and seemed to recover the same as pre-remicade. He did have some rash - ER doctor diagnosed molloscum, for which he is more vulnerable due to remicade, however, I'm not sure that's what it is... it disappeared more quickly than I'd expected and he still has the odd spot, which GP now believes is simply irritation from hockey equipment, etc.??? In any case, my point is that the rash did appear but, again, cleared up relatively quickly with no treatment.

I don't know if it helps at all but, I did read a study noting that using supplemental EN does increase remicade's success by a fair bit (study is included in the Parent's research section), my son currently drinks 1-2 Boost shakes (250-500 calories) per day - however, study indicated average EN intake was 1200 calories. He also takes 1000 mg of Krill oil and 2,000 UI of vitamin D. Of course, have no idea if any helps... but it's not hurting. ;)

I'm sure you'll soon get a few more remicade stories...
 
Remicade was a miracle med for my son. After the first infusion his symptoms abated. We were so thankful.

I do firmly believe it gave him two years before facing a surgery and probably minimized the surgery required. There was much improvement save for a small area that the surgeon later deemed irreparably damaged. The other areas of inflammation were returned to pristine condition with remicade and methotrexate.

I only hope that humira will bring him the same level of treatment. He was asymptomatic with the damaged area so we will take care to monitor fecal calprotectin(a good indicator for him) and utilize other testing(blood work doesnt indicate inflammation for him).

Hated to leave the remicade behind but he built up antibodies.
 

my little penguin

Moderator
Staff member
NEWS & PERSPECTIVE › MULTISPECIALTY
The Duration of Effect of Infliximab Maintenance Treatment in Paediatric Crohn's Disease is Limited
C. I. de Bie, T. Z. Hummel, A. Kindermann, F. T. M. Kokke, G. M. Damen, C. M. F. Kneepkens, P. F. van Rheenen, J. J. Schweizer, J. H. Hoekstra, O. F. Norbruis, W. E. Tjon a Ten, A. C. Vreugdenhil, J. M. Deckers-Kocken, C. F. M. Gijsbers, J. C. Escher, L. de RidderDisclosures
Aliment Pharmacol Ther. 2011;33(2):243-250.

ABSTRACT AND INTRODUCTION
Abstract

Background Infliximab is effective for induction and maintenance of remission in children with moderately to severely active Crohn's disease (CD).

Aim To evaluate the long-term efficacy of infliximab treatment in paediatric CD.

Methods In this observational, multicentre study, all paediatric CD patients in The Netherlands treated with infliximab from October 1992 to November 2009 and with minimal follow-up of 3 months since start of infliximab, were studied.

Results One hundred and fifty-two CD patients [81M; median age at start of infliximab 15.0 years (IQR 13.1–16.4)] received a median number of 10.5 infliximab infusions (IQR 6–21). Median follow-up after start of infliximab was 25 months (IQR 13–40). Kaplan–Meier analysis showed that the cumulative probability of losing response to infliximab in patients who initially required repeated infusions was 13%, 40% and 50% after 1, 3 and 5 years, respectively. Seventy-four patients (49%) needed dose adjustments, with a median time to any adjustment of 6 months.

Conclusions Duration of effect of infliximab is limited as 50% of patients on infliximab maintenance treatment lose their therapeutic response after 5 years. Dose adjustments after start of infliximab are frequently needed to regain therapeutic benefit. These findings emphasise the need for effective, long-term treatment strategies for paediatric
From:
http://www.medscape.com/viewarticle/739551
 

crohnsinct

Well-known member
Another Remicade lover here! O has been on it for three years now and her first post dx scope was in early March and her previous war zone colon is now pristine. Not one illness from immune suppression. The only side effect she has and it is a rare one was Remicade induced psoriasis but we are sticking with the Remicade. I have a bit of psoriasis and psoriasis is an auto immune condition so she might have gotten it anyway so I am not 100% bought into it being caused by the Remicade but it definitely got very bad very fast after starting Remi. We did add mtx to O's treatment a year in. We added it for joint issues (they are thinking psoriatic arthritis).

When my second daughter was dx'd I was actually hoping for Remicade given our great experience with it for O. She is on mtx alone.

I have read in the adult section of people staying on Remicade for up to 10 years and counting.

The success rate is as good as if not better than most of the meds out there and like all the other meds it works for some and not others.
 

my little penguin

Moderator
Staff member
It was the only drug to give DS his life back
6-mp did nothing and went to his liver
Mtx alone was not enough -he couldn't get off steriods and had vasculitis
Remicade fixed that
Granted he had an allergic reaction after 8 months but ....
He is an extremely allergic kiddo ( drug allergies , food allergies , insect/pollen allergies )
History of anaphalaxis
So not surprising he reacted to remicade
He has been on Humira ever since ( two years now )
 
Happy to hear Humira is working for your son. My son is at the maximum Remicade dose now, every four weeks. I am preparing for a Plan B.
 
Remicade lover here as well. Son has been on it for 15 months now and it has been amazing. It has allowed him to have a normal teenage life and to catch up to his peers on growth. I pray every day that it will continue to work for many years or until there is a cure.
He has a healthy appetite and has gone from 5'1" and 89 pounds to 5'8" and 130 pounds. has a normal formed BM once a day, no more joint pain, no more eczema, is able to handle the stresses of high school with no more problems then any other healthy 15 year old. Has not missed a day of school do to sickness since starting remicade.
 

Maya142

Moderator
Staff member
M did very well on Remicade with MTX - in fact her scopes showed that 8 months after being diagnosed, she went from having inflammation all through her colon, terminal ileum and stomach to having just mild inflammation in her TI - NO inflammation anywhere else! We only switched her from Remicade because of her arthritis - her Crohn's has been mostly well controlled. She even grew half an inch on Remicade - we were not expecting that because she was 16 and we thought she was done growing!

No side effects at all from Remicade besides some tiredness the day after the infusion. No increase in infections or anything like that - and she was on a high experimental dose of Remicade (20mg/kg) every 4 weeks.
 
My son is doing okay on Remicade. He still has urgency and his stool are watery consistency. Good but not great. When he was in a short remission he gained weight, had semi formed stools, had almost no urgency, had 2 BM's a day and no blood. Life was good. He was pretty darn close to normal. He was so happy. I heard that Remicade was a miracle in a bag for some.
Not sure if this is the new normal. We are kind of settling because we know that things could be so much worse. Two years and still figuring it out.
Just curious. My son was on a lot of antibiotics for recurring ear infections when he was young. They gave him Clindamycin because he had skin reactions to a couple of meds. I read some research about increased Crohn's risk with antibiotics prior to age 5. I know it won't help my son but it may help someone elses or maybe someday my own grandchild. This is a terrible disease. I wish I could take it from my son everyday.
 

crohnsinct

Well-known member
Rose: How long has he been on Remicade?

Yeah there is some evidence of early and prolonged antibiotic use but it is only one of many factors. They are still trying to figure out what the perfect storm is and it will end up being a combination of G.E.M. (Genetics, environment and microbial) and even then it will probably be different for each person. Just one big mystery!
 
Remicade is an amazing medication that saved me, just like it saved a lot of your loved ones.

A few tips:
1. REMISTAR, REMISTART, and REMISTART.
2. I usually get really tired and overall wiped out from my infusions, so let him rest on those days.
 

my little penguin

Moderator
Staff member
If he is having trouble gaining Rose has he tried EEN or supplemental en?
DS drinks 2-3 peptamen jr a day to increase the efficacy of Humira.
He also did 9 weeks of EEN with peptamen jr.
When you say Max dose ( 10 mg/kg)? Correct ?
Has he had antibodies /remicade levels done ??

Humira takes longer to become therapuetic and can not be adjusted for weight so what worked for your kiddo two years ago 40 mg at x weight suddenly becomes a lot less meds as the kiddo grows and gains weight ...:(
 
I appreciate all of your stories. I had a more negative view of it, than I do now. Thank you. If we have to go there, I won't be AS worried! :)
 
Ronnie has had no side effects from Remicade. We have done antibody levels twice and they are good. Not building antibodies against Remicade. I just think the drug is working good, not great. Feel like we are just teetering along. We have tried using Ensure Plus and he flared, something in it doesn't agree with him.. maybe carrageenan? not sure. Hesitant to try another drink. Just like everyone can eat different foods, Remicade will work better for some than others. Some gastros believe in top down approach. Start with Biologics first, Think better results if caught in early stages. I would not hesitate to recommend the Remicade, it has been a God send for many. Wished it worked better for us.
 

crohnsinct

Well-known member
Yeah Rose, I would expect better by now. I can't remember but are you using anything with the Remicade? With some patients (my daughter included), Remicade does the heavy lifting but it doesn't get the kids all the way to a real good remission. He may need to add a stint of EEN or Mtx. My daughter was on Remicade for 4 months but adding a 6 week course of EEN is what finally got her to remission. She is now using Mtx along with the Remi.

But you are right. For some it just doesn't work. My nephew was one of them. He even tried max dose, 4 week interval with Mtx. He has since switched to Entyvio.
 

my little penguin

Moderator
Staff member
Rose peptamen does not have carragean
It semi elemental so the proturns are more broken down ( less healthy intestine needed)
Other need an elemental formula ( eo28 splash , neocate , elecare etc)
The plus formulas are the hardest on the system due to the extra calories the gut diesnt tend to like those kind often in kiddis with GI issues imo.
Glad biologics are working at least Ok
 
My son is taking remicade 10 mg/kg every 4 weeks
And methotrexate weekly to boost. He is better but not at
His best. Levels are where they should be. Doctor doesn't want
To give up yet. How is your nephew doing with entyvio?
 
Thank you for all the info about peptamen. Never heard of it before. Very informative.
Will mention it To gastro. Would love to try it. Anyone using benefiber to try and form
Up loose stools. Son Just started very slowly, 1-2 tsp. a day, and I am a
Nervous wreck. No guts, no glory. I have to keep
Telling myself that if I don't try new natural things to
Try and help this, I will never know if something will help.
 

Maya142

Moderator
Staff member
Have you thought about getting a second opinion Rose? We lived in NJ for many years and there are many CHOP facilities all over south NJ.
My daughter drank Peptamen Jr too but there are many formulas - pediasure, pediasure peptide, Neocate, Elecare - It's a matter of trial and error.
 
Maybe. I added ensure plus supplement on my own after talking with pediatrician.
Been to three doctors and no one mentioned it. They
Think his weight is fine but I know better, plus who
Doesn't like a little cushion to prepare for the
Dreaded Next flare.
 

crohnsinct

Well-known member
He is doing very well with Entyvio. It has a different mechanism than the other anti tnf biologics. The VERY simplistic explanation our GI gave us is that the tnf has sticky stuff on it and so does the intestine. When the tnf comes it sticks to the intestines and is able to squeeze in. Entyvio neutralizes the sticky stuff so the tnf can't get in. It does not suppress the amount of tnf produced. Sooooo, the theory could be in my nephew's case that he isn't overproducing tnf so suppressing did nothing because he just had super efficient "stickt stuff" and all his tnf was getting in.

How's that for sophisticated?
 
DS has been on Remicade since November 2013. It started working immediately for him. He was in remission a month later and hasn't looked back. He's never had side effects that we could attribute directly to Remicade. He's up 20 pounds and 5 inches and by looking at him you'd never know he had been as sick as he was. It's been the best and most effective maintenance med for him.
 
Rose, my son wasn't fully in remission with remicade. Even though it was our miracle med and took away all of his symptoms, he had issues with weight. Since his inflammatory markers looked well on mtx and remi the docs weren't concerned until imaging, scopes and fecal calprotectin came back. The remicade did away with all but one area. It was then we decided on surgery.
 
My son just spent one night in the hospital and he's feeling better, but he's back on steroids.

I'm preparing for the Remicade..he isn't so sure. As far as he is concerned, Remicade, steroids, Peptamen are "Not good enough". I'm worried the steroids are effecting his mind and may cause him to make a poor decision. He was super chatty last night, which isn't like him.

His doc said we could do either and I had recommended that he do Peptamen (when we got home) instead of continuing steroids, but he said, "That stuff just isn't good for me."

Of course it's better for him than steroids..

He isn't making total sense, but he gets mad if I disagree with him.

A piece of our conversation yesterday at the hospital:

Me: So, do you understand what is going to happen now?
Him: No.
Me: So, you are either going to take steroids when we get home or go on exclusive Peptamen.
Him: I don't want to do either of those things.
Me: Those are they only ways to get you into remission, though.
Him: I'm going to do more research! (Gives me a look like I'm dumb).
Me: Okay, but there are only 3 ways; EEN, Steroids or diet and you've tried diet (SCD) and it didn't work. We can't mess around with trying another one. You are too sick.
Him: All of that stuff is bad for me. They need to find a better way!
Me: I agree. But, these are our only choices, now.

Then I start to explain about the Remicade infusions..

Him: That sounds like something I'll become dependent upon.
Me: Well, it is ongoing treatment and something you'll be on until it stops working or they find something better..
Him: That doesn't sound good at all!

I stop talking and let him rant a bit, sympathizing..I don't want him to dig his heels in, so I just agree that it does suck that there isn't better treatment etc.

He doesn't give me an answer about Peptamen or steroids, but when the nurse comes in, she coincidentally asks him if he'll be continuing steroids once he gets home and he says, "Most likely."

But, he is still not on board with the Remicade.

He's 18 and I couldn't force him if I wanted to, but I don't want to. As he was diagnosed at 16, I have only advised, not dictated his treatment and he has followed most of my advice..but, not all.

How do I get him on board with Remicade with his agitated, steroid brain??
 

my little penguin

Moderator
Staff member
Does he see a therapist ( psychologist who works with medically complicated kids)?
Most Ibd prograns have one on staff or can refer you to one .
That way it's not about. Mom said do this so teen says not going to happen
But more doc said xyz etc....
And therapist helps him work through that .
Did he join the teen forum here ?
 
He saw a normal therapist for over a year, but then didn't want to go anymore. I've been trying to get him to go back, but he always says, "I might."

Since he became ill, his world has shrunk terribly and I am currently the only adult that he trusts, although he doesn't see me (or anyone) as fully competent in reguard to treatment decisions.

He is a bright boy, much smarter than me, but his brain has been effected by the starvation, drugs, worry, pain, and isolation.
 
That sounds so hard, and I don't have any personal experience to share, since my daughter is much younger. I agree with MLP that you might try to connect him with other teens dealing with the same things, either in person, or through a teen forum like the one here, or something like Starbright World. If he meets others who are having good results with Remicade, he might be more open to it.

Also, if he does agree to Remicade, make sure he knows that it might take a while to see results. Some kids seem to start feeling better fairly soon, but for others, it can take months to see a difference.
 

crohnsinct

Well-known member
Sounds like some therapy would be a good idea but for the immediate future and decision making I would let the GI have a talk with him and make myself scares. It never ceases to amaze me that the GI can say the exact same thing we as parents say and suddenly the idea is an awesome idea!
 

Tesscorm

Moderator
Staff member
Agree that GI may make more of an impact.

But, some things you may discuss with your son...

- he is not choosing 'risk' (from meds) or no risk (from diet, etc.). What he is choosing is risk from meds or risk from un- or undertreated crohns. As sad as that may be, that is the situation we are in. If he chooses risks from meds, he will be monitored and treatment will be controlled by his GI who is experienced and knowledgeable about the medication and side effects. If he chooses risks from un- or undertreated crohns, he will, himself, be taking responsibility for his care (to a large degree). While he will still be monitored at follow-up apptmts, etc., the real monitoring will only come once symptoms become apparent from increasing activity, symptoms or damage from his crohns.

- I don't have stats to share which compare the different risks, I do know one of the greatest risks from remicade, which scares all of us, is the cancer risk and the cancer risk is very, very small. The risk from untreated crohns can be permanent damage (ie scar tissue that can only be fixed through surgical removal of that area) or, possibly, bowel cancer (although I don't know how common this is??). However, even surgical removal of a section of his bowels can leave a permanent impact on his life.

- Does he, or did he, play any sports? Does he drive? Has he ever had sunburns? Does he go swimming? etc., etc.... All of these carry risks. But, no one is researching the stats on those risks? Even if he did, he likely wouldn't stop doing these activities because he enjoys them, they improve his quality of life, etc. Moving ahead with the best treatment for his crohns will provide him with the same benefits. It's true that the average person doesn't need to take on the responsibility or risks of meds to carry on a normal, healthy lifestyle but, unfortunately, this is the hand we (our sons) were dealt and we have to manage it to take our (their) lives to an optimal level.

- I also stressed to my son that NO ONE has the perfect life. We all have our strengths which give us certain advantages (whether that be intelligence, personality, athletic or artistic ability, etc.) but we all have crosses to bear as well. I told him he has to learn to manage his 'crosses' and be grateful for his advantages.

- Specifically to remicade - he will not become 'dependent' on remicade in the sense that you become addicted or dependent on other medications. However, because he has crohns, he will be dependent on some sort of treatment. :( It is true that once starting remicade, it is not advisable to stop since you may develop antibodies to it if you stop. And, then, when/if symptoms return and you need treatment again, you will not be able to use remicade again. Perhaps this is what he is thinking when saying he will become 'dependent' on it.

- re EEN (peptamen) vs. steroids - there are no risks with EEN and he is incorrect in saying 'it is not good for him'. EEN is the only safe, risk-free, way to attempt to achieve remission. It not only can help achieve remission but it provides all necessary nutrition and has healing qualities (which steroids do not).

- my son has been on remicade for two years now... he has had little to no side effects. The greatest negative impact it has had has been scheduling; and, honestly, even this has been a small impact. It does take a bit of planning and forethought (ie planning vacations, etc.) but, because I very much plan ahead and around his infusion schedule, it hasn't been a huge problem. However, this 'problem' can be somewhat alleviated by using humira (another biologic) as it is self-injected, so does not require you to plan around infusions. (But, the injection is quite painful and becomes the responsibility of the patient to stay on schedule!)

Perhaps, you can discuss these points with your son but then ask your son to discuss the issues with his GI so that the information/opinion he is getting is from the GI and not only from you. When I have a concern/question, I explain what it is to my son and then ask the GI in front of my son - my son and I then know whether or not my concern was valid and what the appropriate action should be. There have been times I haven't been in complete agreement with my son's decisions, however, he was also 18-20 years old, and once I knew he was aware of the choices and consequences, I believed they were his decisions to make. I could no more see the future than he could and I knew he was making his decision with information given to him from his GI (although I certainly included my opinion! ;)).

Good luck!! Every age brings different challenges to us parents! :ghug:
 
Would he read some of the more recent studies that are pro-Remicade? I'm sure we have links sound here somewhere.

It sounds like he maybe doesn't believe new or different meds can help him? I agree with the others on getting his GI to talk to him, very seriously, about how horrible his disease can become if it gets out of control.
 

Maya142

Moderator
Staff member
I'm sorry he's having a hard time. It's so hard with young adults! Seeing a psychologist who dealt with kids with chronic illnesses (actually IBD specifically - she works in the IBD clinic at our hospital) really helped my daughter. It sounds like he's really had a hard time in the past few years and seeing a psychologist might really help. It has to be one that your son likes and trusts - we saw 2 others before we found this one for my daughter!

I agree with everyone about having his GI talk to him - M's GI insisted she see a psychologist and that was the only reason she agreed!
 
Thank you all so much for your input!

My son and I have had these conversations in small doses (because the subject normally agitates him pretty quickly) and I am pretty certain that he is in denial and mostly wants to stay there. He doesn't have much respect for the G.I.s that we've encountered so far and there have been several bad apples along the way and he doesn't seem to trust or like any of them now. He'll tell me that his stomach is hurting in the car on the way to his apt and then when they ask how he is, he will say, "Fine."

He's done one day of the steroids at home. I would of course ask the doctor, but could he switch to Peptamen tomorrow, if he were to change his mind?

My son looks at the ingredients on the Peptamen box and is disgusted. I don't know if it is in his head or not, but he says he never feels right when he's on it. That's why he says it's not good for him.
 
We were told Peptamen had an 85% chance of putting my son into remission and it did. Son just asked, "What percentage of people does Remicade keep in remission, without bad side effects and for how long?"
 

Tesscorm

Moderator
Staff member
He can start drinking peptamen at any time (even while on medications), however, he usually wouldn't be able to stop taking his steroids immediately. With or without peptamen, steroid dose typically needs to be tapered down. The only exception may be if he's just started taking the steroids a couple of days ago??? But, if he's not committed 100% to EEN, I'd be careful starting and stopping steroids, starting EEN, not following through, and having to start steroids again???

As far as not feeling well on peptamen, there are different formulas available - it may be that the peptamen doesn't agree with him?? If the GI is agreeable, perhaps, he can suggest a different brand.

I don't know the percentage of people remicade helps but here's a link to a list of articles/studies. If you scroll down, you come to a grouping of articles related to medicatons. There are some articles on remicade/biologics.

http://www.crohnsforum.com/showthread.php?t=43002

As far as conversations in small doses... yep, here too. I could rarely get my son to sit still and have a long conversation re crohns... I also did it in bits and pieces. And, sometimes, I wasn't even sure if he was completely listening to me as I may have been speaking while he was watching tv or playing a computer game! :ybatty: And, I did try to keep it to one 'topic' at a time. :ack: But, I have found some has sunk in! We've been at GI appointments when he's asked a question or used terminology that's shown an understanding of the topic of conversation. :) It is a fine line... trying to give the information/understanding of the issues while not pushing them away because they just don't want to acknowledge it. :ghug: I think you're probably doing a great job and, while he admits it or not, he is benefitting from the information you share.

It's unfortunate he hasn't had great experiences with his GIs; certainly doesn't help him feel good about any decision. :( Hopefully, in time, his relationship with his current GI will grow??
 

crohnsinct

Well-known member
Well if you read the studies on Remicade they can vary wildly with respect to effectiveness. However, I do believe the overwhelming majority of people who have used or are using Remicade have not encountered the "horrible" side effects.

Just looking at the population here, they are a very pro Remicade bunch. The only thing that has caused most who have stopped it here to stop is a build up of antibodies or that it simply didn't work for them.

Looking at efficacy is tricky. We all know that everyone with this disease is different. Just because one med worked for some doesn't mean it will work for others. However, even if a drug has a low effective rate of say 30-40% (not saying Remicade's rate is that low just an illustration) does that mean you don't try it because it doesn't work 70% of the time? What if you are in the 30%?! If you have tried other things and they don't work, what are your choices? You can't do steroids long term, the EEN/food cycle isn't working, other meds have failed...then what? Maybe he has some other treatment theories that might work...maybe the GI does? But I wouldn't not try a med because of a low efficacy rate.

Length of time it works? My daughter is three years running. 2 1/2 since she achieved solid remission and her last scope declared her colon pristine! There are kids at our infusion center who have been on the drug for 7 years with no issues. I have read adult stories here of 13 year runs.
 
Lenny,

I was a nervous wreck about the thought of starting my son on Remicade. I literally did not sleep the night before his first infusion, but he hasn't had any side effects at all in almost a year. We get bloodwork drawn prior to each infusion, so we will be on top of any changes. It has helped him but we have difficulty gaining weight and still see some breakthrough bleeding when he is sick or eats something that doesn't agree with his crohns colitis. Sometimes we do nothing other times we do a short course of prednisone to get him back on track again. If I could keep my son on low dose Pred I would, if it wasn't for all the nasty side effects. Truly though, if you read all the potential side effects of an aspirin or a Tylenol you would be frightened to take them ever again. My son gets infusions once a month and it doesn't bother him at all. He naps or watches T.V. Three hours start to finish. They started him with Tylenol and Benadryl the first couple of infusions and that made him tired. He doesn't need any of that now. He feels fine after Remicade. I hope this helps ease your mind and his a bit and I pray that he is one of the people that it works well for.
 
Clash,
How is your son doing post surgery?
My son and your son seem very similar. My son is now taking Remicade every four weeks and methotrexate.
I pray for all our kids.
 
Rose, he is doing good. He works an almost full time job and has school. He hasn't complained of any issues related to CD although right before starting the humira his JSpA was flaring. It has seemed to settle.
 
I was terrified of Remicade, but now I just want to get it started. I hope my son will come around soon.

Thanks everybody!!!
 

Maya142

Moderator
Staff member
Good luck lenny! See if you can pull up studies on pubmed for him see -- that might reassure him if he doesn't trust his GI. Remind him about risks versus benefits - untreated CD has huge risks too. You could even show him some of the stories on the forum - there are so many kids who have done well on Remicade!
 
My son has thick, gorgeous, hair and I just read that hair thinning is a common side effect of Remicade. :(

Does this happen to most people or everyone? Thanks!
 

my little penguin

Moderator
Staff member
Lenny
Focus on the word Possible side effects
Or potential meaning they may never happen

That saud DS had no hair issues at all with any of his drugs
Pentasa
6-mp
Mtx
Remicade
Asacol
Or
Humira
 
Lenny, my son's (14 yo) hair thinned when he started 6-mp but no one could tell unless you were in the shower with him. He was alarmed and I was sad, but because he had thick hair no one knew. And it was temporary. He has been on Remicade since January and no hair loss noted :)
And I think the Remicade is working. His labs are great but he is extra surly (teenage stuff??). Still very hopeful for Remicade.
 

crohnsinct

Well-known member
My daughter lost her hair when she was malnourished with undiagnosed Crohns. No issues with Remicade. A bit with Methotrexate but it came back and came back corkscrew curly...go figure!
 
Lenny,
My son's hair has thinned a bit. I am fortunate that he is a boy and it's nothing that a nice crew cut can't disguise. I couldn't tell you which drug caused the thinning, Prednisone, Methotrexate or Remicade.
Good luck with the Remicade. I hope your son responds well to it. You will never know till you try. A friend of mine's son has been on since a teenager for seven years now with no side effects. He calls Remicade "normal in a bag, because it makes him feel like he is normal and doesn't have crohns.
 
Lenny
Focus on the word Possible side effects
Or potential meaning they may never happen

That saud DS had no hair issues at all with any of his drugs
Pentasa
6-mp
Mtx
Remicade
Asacol
Or
Humira
Unfortunately, it didn't say possible, about the hair loss, it said common. Then I watched some people getting infusions online and a girl said it was "normal" to lose hair. I just want to know what to expect, as much as possible. Although my son still has not agreed to try it, yet.

I don't understand why better records aren't being kept.
 
I think C may have had some thinning when we switched to mtx injection from oral but not a noticeable amount and his hair is really thick anyway. But not with remicade.
 

Tesscorm

Moderator
Staff member
Thought I'd responded?? (maybe on some other thread! ;))

Anyway, S has been on remicade for two years... I haven't noticed a change and he hasn't mentioned anything either.
 

Maya142

Moderator
Staff member
No hair loss with Remicade. We did have a little hair loss with MTX but M has thick hair and it really wasn't noticeable. They prescribe folic acid with MTX to prevent side effects like hair loss.

Honestly, I've never really heard of hair loss being a side effect of Remicade. My girls have been on nearly all the Anti-TNF - Remicade (3 times for M, 1 time for S), Humira (twice for both girls), Enbrel (1 time for M) and Simponi (1 time each) and we've never noticed any sort of hair loss with Anti-TNFs. M was even on an experimental "high dose" Remicade regimen - 20mg/kg every 4 weeks which is 4 times the usual dose - still no hair loss! I wouldn't worry too much yet.
 

crohnsinct

Well-known member
I am sure we have set your worries at ease by now but check this out. Not an amazingly well controlled scientific survey but the answers would be enough to calm my fears. Of note. 40% of the people who experienced hair loss were also on Methotrexate and that is a much more common side effect of mtx.

http://www.ehealthme.com/ds/remicade/hair+loss
 
Hi Lenny

fairly new to remicade as DS(16) has just had 3rd loading dose.

We have had no problems and it has given us our son back. He is able to more or less forget his Crohns inbetween infusions and has loads more energy and appetite!

We were worried about the side effects etc but it is working and is better than having his bowel removed/
 
My son's apt for the first infusion is set for one week from now. He has a few days to do his own research and cancel the apt. but I'm pretty sure it's going to happen.

I hope I can soon write his success story here, too!!!
 
Rose, my son wasn't fully in remission with remicade. Even though it was our miracle med and took away all of his symptoms, he had issues with weight. Since his inflammatory markers looked well on mtx and remi the docs weren't concerned until imaging, scopes and fecal calprotectin came back. The remicade did away with all but one area. It was then we decided on surgery.
Have your son's FCP and scopes ever disagreed with each other?
 
No they have reflected what the other tests(except blood work since its has stayed in the normal range) have shown, to the best of my memory. He was extremely symptomatic as well with flares before remicade. Later we relied on his fc to give us insight since he was asymptomatic.
 
No hair loss here.

I hope your son decides to try Remicade. Like someone else said... it gave our son his life back.
 
I made the appointment for Wednesday and my son seems to be going along with it. We're being told that we need authorization from the insurance company, but the dr says everything is all set and authorization has been given. Um??

The GI gave me paper work that states:

"Special Considerations:
There have been some reports of serious infections associated with infliximab use, including tuberculosis and sepsis, a life-threatening blood infection. You should always have a TB skin test before you use infliximab as the drug can increase the risk of active TB for those who have been exposed. It's not that you will "catch" TB when taking infliximab, but if you have latent TB, the drug can reactivate the infection. In this case, you doctor should begin TB treatment before you start infliximab. The same precaution should be taken before beginning treatment with corticosteroids."

Does this mean my son should not start Remicade while on steroids? (or that it is more dangerous) Or, does this mean that my son should have been tested for TB before he was put on steroids?

THANKS!
 
He should have a TB test done before starting Remicade. I've never heard of that for steroids.

Lots of folks start Remicade while on steroids. The steroids, if working, help bridge any gap between not feeling well and when the Remicade starts working.

Someone correct me if I'm wrong, but I believe the overall concern with steroids, biologics... any IBD med really, is potential immune suppression, with Imuran/6MP/Aza being the worst. So, a combo of multiple medicines increases immune suppression, hence some of the pre testing for TB, etc.

Right?
 
Yep, what mehita said. The concern is TB testing before starting the biologic. I've never heard of TB testing before pred but maybe large doses or IV steroid is what the pamphlet is talking about.

Being on pred while starting remicade is common. It works as a bridge until the remicade can take over. My son was put on pred to bridge us to switching from adult GI(who dx'ed C) to a ped GI I had chosen. Even though by the time we saw the ped GI we were certain pred did not work for C the GI wanted to maintain a small dose until remicade was underway.

I've never been so glad to leave a med behind than with pred. No matter the dose C had all the side effects with none of the benefit. So he was dealing with side effects and symptoms of CD. Remicade stopped all the CD symptoms in their track. Awesome med!
 

Maya142

Moderator
Staff member
My daughter stayed on steroids (Entocort, not Prednisone) for about 3 months while Remicade took effect. She had no side effects with Entocort and it worked well for her. On the other hand, she had several side effects with Prednisone but that also worked well for her.

We have never tested for TB with steroids but definitely have before biologics. I'm sure there is a greater risk for immunosuppression with steroids + Remicade but your doctor must have decided the benefits outweigh the risks. Being on steroids while starting Remicade is really quite standard. I wouldn't worry too much - I know, much easier said than done!
 

crohnsinct

Well-known member
yep! Remicade plus steroids here also. Also the TB test was only done after the decision to add Remicade and oddly enough the TB test was done on Thursday after her scope so afternoon and her first Remicade was the following day so I don't even think there was enough time to get a true reading...maybe there was. Which reminds me, I have to get O's yearly TB test this week. Thanks!
 
I thought it was normal to start Remicade while on steroids..just wanted to make sure. I'm still confused about what that one sentence means, though.

My son had the TB test last week when he was in the hospital.

As far as the possible side effects of Remicade. Trouble breathing. Is that referring to during the infusion or hours or days later???

I'm not going to suddenly see my son gasping for air, right?! :(
 
Trouble breathing? Maybe with the very rare anaphylactic reaction - which usually happen right away. He'll be monitored closely for his first infusion. At DS's the nurse stayed in the room the entire time. At a minimum they'll check on him every 15 minutes.

You can have trouble breathing with just about any med, even Tylenol.

Im trying to find the website that breaks down side effects into percentages, but need to run right now. Will try to look it up later... unless someone else knows which one I'm talking about and can share it.
 

my little penguin

Moderator
Staff member
Any drug - check them all or food or insect sting etc has the potential for anaphylaxis
There is a check list for the signs of anaphylaxis
Anaphylaxis to drugs tends to occur while you at the infusion center
The nurses monitor every vital sign so they can typically tell before it progresses
Add in anaphylaxis is rare for everyone
But like perfect pitch or labor once your body has done it once
It knows how to proceed again quickly .
DS had anaphylaxis to food once an epi pen did what it was suppose to and stopped the reaction.
DS also had two reactions to remicade - both where minor but it was decided to stop before they became anaphylaxis .

Anaphylaxis Symptoms & Diagnosis
Symptoms
Symptoms of anaphylaxis typically start within 5 to 30 minutes of coming into contact with the allergen to which you are allergic. In some cases it may take more than an hour for you to notice anaphylactic symptoms.
Warning signs typically affect more than one part of the body and may include:
• Red rash, with hives/welts, that is usually itchy
• Swollen throat or swollen areas of the body
• Wheezing
• Passing out
• Chest tightness
• Trouble breathing
• Hoarse voice
• Trouble swallowing
• Vomiting
• Diarrhea
• Stomach cramping
• Pale or red color to the face and body
• Feeling of impending doom
Diagnosis
To diagnose your risk of anaphylaxis or to determine whether previous symptoms were anaphylaxis-related, your allergist / immunologist will conduct a thorough investigation of all potential causes. Your allergist will ask for specific details regarding all past allergic reactions
From
http://www.aaaai.org/conditions-and-treatments/allergies/anaphylaxis.aspx
 

CarolinAlaska

Holding It Together
I think that sentence is saying that people on chronic steroids should also be screened for TB as it also can suppress the immune system.
 
My son's first infusiion had to be delayed because his TB blood test came back inconclusive. He had the skin test on Tuesday and will have it checked this morning.
 
It's high on the ladder for a bottoms up approach which a lot of GI's follow. Start with mildest med and work your way up until you find one that works. Hubby has been great on Imuran for the last 13 years so no reason to move him up to remicade. Although there are quite a few studies coming out especially in pediatric portion that a top down approach is better start with biologic/remicade and get them in good remission fast.
But I so wish we would have started remicade sooner...
 
Lenny,
Remember, sadly this forum is sought out by people that have hard to treat Crohn's.
The average IBD'er is out living their lives and most don't think about coming to a forum and seeking help and support.

We all hope/wish/pray that someday that will be our children.
Out living life with no worries of IBD
I dream of that day.:confused2:

Remicade has made a huge difference for my Grace.
I never would have guess at only 6 I would be excited about taking my kid to get infusions, but I am.

Hugs
 
It's high on the ladder for a bottoms up approach which a lot of GI's follow. Start with mildest med and work your way up until you find one that works. Hubby has been great on Imuran for the last 13 years so no reason to move him up to remicade. Although there are quite a few studies coming out especially in pediatric portion that a top down approach is better start with biologic/remicade and get them in good remission fast.
But I so wish we would have started remicade sooner...
When my son was diagnosed 2 years ago, I remember MLP recommended Remicade and Top Down. When I told my son's doctors that, they told me that they did step up and not to read nonsense on the internet, basically.
 

Maya142

Moderator
Staff member
Honestly, the "Top Down" approach is quite new but it catching on fast at most hospitals. With my daughter's arthritis we did the step up method and are now paying the price. When she was then diagnosed with Crohn's, we were determined not to make the same mistake again and treated it as aggressively as possible - Remicade + methotrexate + steroids. 8 months later, her scopes looked pretty great! Her joints, on the other, hand are not so great.

Try not to worry too much about the past - we all try to make the best decisions for our kids.

I vaguely remember you saying months ago that you wanted a second opinion for your son -- did you ever get one? It sounds like you're not very comfortable with his GI.

Really hope Remicade is his miracle so he can get on with his life.
 

crohnsinct

Well-known member
I love remicade and am a top down believer as well

However, with my second daughterd her disease wasn't as extensive as o's and doc suggested trying mtx as mono therapy first. So while we didn't start at the bottom and it seems we are doing middle up, it is working. I think bottom or middle works for a lot of people. Docs make their decisions based on years of experience with the decease and their best guess at how it is going to progress. Also don't forget many of their hands are also forced by parents not wanting to go with the big guns.

Either way it is important for both the docs and parents to monitor the disease closely and not be so attached to their chosen course that they recognize the need to step things up.

So yes remicade is great but it isn't the only thing. Heck! We bash pentasa to no end here but o has a friend with crohn's who has been on nothing but pentasa since dx five years ago and her scopes and mre are perfect. Same doc as o! At first I thought he was a remi hog or just going with easiest solution with o but now that I see her friend and sister and his different approaches I feel better that he really must have thought it was necessary. Vice versa, remi would have been an easy sell to me for t but he went conservative with mtx (did I just say that).

So different presentations, parental risk tolerance and best guess at disease course. Just don't get stuck!
 
If I'm understanding that ^ study, Remicade alone is effective at 16 weeks in only 22% of patients, but if they are on imuran and Remicade, it goes up to 44%. And the imuran keeps you from developing antibodies against the Remicade..

Is that right?
 
There is a thread link below that has some good info from each of the major trials that occurred with biologics for CD

http://www.crohnsforum.com/showthread.php?t=41874

It's from a scientific book that provides a lot of info about CD, treatments and the studies. One of our members posted info different chapters/articles but you can find the results of theses studies, such as COMMIT and SONIC as well as the other major trials on PubMed.

Here is a snippet from the link I posted

In the COMMIT trial patients were given Remicade alone or Remicade with Methotrexate. At 14 and 52 weeks, there was no difference in how many patients were off steroids.
- In the SONIC trial patients received azathioprine alone, Remicade and Azathioprine, or just Remicade. Patients had Crohn's for an average of two years. 31% of patients just on azathioprine achieved steroid free remission at 26 weeks versus 57% of the patients on azathioprine AND Remicade and 44% of patients just on Remicade. The groups on Remicade showed rates of mucosal healing at 44% and 30% respectively versus 17% of those only taking Azathioprine. There is an important editors note however that states that azathioprine and 6-MP have much higher rates of remission in other trials as all patients in the SONIC trial were rapid metabolizers.
 
Mucosal healing is now the the ultimate goal since it has been determined those that achieve mucosal healing remain in deep stable remission for much longer and therefore less progression which could lead to surgery. For many years GIs chose to treat toward clinical remission or absence of symptoms.
 
It's the craziest thing, but the above link, is not what I have on my computer screen. The link changed when I posted it here!
 
My son ate Blue Bell ice cream early this morning. If you haven't heard, it's all been recalled do to a listeria outbreak. It has killed 5 people in Texas.

It's especially bad for people with compromised immune systems.

I have a call into his doctor to see if we should delay the Remicade again. So far, I haven't been able to find out anything on when symptoms start..
 
We are in Texas and have struggled with a stomach bug after eating bluebell. GI did not think it was listeria but did take him long time to recover. There is a specific code on the bottom of the container to tell you if it is part of the recall or not. We have switched to haagen daz :)
 
And...I wouldn't hold off on the Remicade. The sooner you start the better he will feel and the less anxiety you will have.
 

my little penguin

Moderator
Staff member
But is he sick???
Did he he eat the contaminated lots or just the brand blue bell?
Lots of plants lots of stock and frozen food tend to hang around longer
The recall tends to be very specific and sites the states where it's distributed to ....
And he hasn't been on immunosuppresants for a long time correct?
 

Maya142

Moderator
Staff member
I would definitely check with the doctor - if he isn't sick and doesn't have fever they probably will want to go ahead with the infusion.

For what it's worth my girls have been on biologics (+MTX/Imuran) for years and have never had an increase in infections or anything like that. Remicade sounds a lot scarier than it is. Once you actually go through with it, you never look back!

Good luck!
 
The news said that they are recalling ALL Bluebell products. The ice cream had sat in our freezer for about 4 days and he ate it about 3 hours before finding out about the recall..

He's not showing any symptoms so far, but the nurse said it might take a while and "we're all different".

I'm just nervous about the Remicade as it is and didn't want to have done anything to increase him having trouble. Just waiting to hear from the GI nurse that we can go ahead on Thursday.

Thank you all for making me feel not so alone with this whole process!! :)
 
It is a voluntary recall of ALL, but certain lots are affected. 'round these parts lots with a "S" are the bad ones. My research (because of kid's stomach bug) says symptoms show between 3 days and 2 weeks.

This is a super anxious time for you, I really think that once the first infusion is complete, you will feel so much better.

Don't wait for what might happen, just go for it.
 
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