# Success stories with Remicade?



## lenny (Mar 24, 2015)

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.


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## Cat-a-Tonic (Mar 24, 2015)

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!


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## Tesscorm (Mar 24, 2015)

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...


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## Clash (Mar 24, 2015)

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.


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## my little penguin (Mar 24, 2015)

> 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.
> ...


From:
http://www.medscape.com/viewarticle/739551


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## my little penguin (Mar 24, 2015)

http://www.hindawi.com/journals/grp/2011/287574/


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## crohnsinct (Mar 24, 2015)

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.


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## my little penguin (Mar 24, 2015)

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 )


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## Rose (Mar 24, 2015)

Has Humira helped your son just as well as the Remicade?


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## my little penguin (Mar 24, 2015)

DS has done well in Humira


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## Rose (Mar 24, 2015)

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.


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## Jmrogers4 (Mar 24, 2015)

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.


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## Maya142 (Mar 24, 2015)

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.


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## Rose (Mar 24, 2015)

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.


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## crohnsinct (Mar 24, 2015)

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!


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## Rose (Mar 24, 2015)

He has been on Remicade since May 2014.


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## hedge (Mar 24, 2015)

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.


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## my little penguin (Mar 24, 2015)

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 ...


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## lenny (Mar 24, 2015)

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!


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## Rose (Mar 24, 2015)

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.


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## crohnsinct (Mar 24, 2015)

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.


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## my little penguin (Mar 24, 2015)

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


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## Rose (Mar 24, 2015)

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?


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## Rose (Mar 24, 2015)

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.


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## Maya142 (Mar 24, 2015)

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.


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## Rose (Mar 25, 2015)

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.


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## crohnsinct (Mar 25, 2015)

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?


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## Mehita (Mar 25, 2015)

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.


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## lenny (Mar 25, 2015)

My son gave an FCP sample earlier in the week and we shold have the results soon.


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## araceli (Mar 26, 2015)

Another success story with remicade here. 2 years plus and daughter doing great.


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## Clash (Mar 26, 2015)

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.


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## lenny (Apr 3, 2015)

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??


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## my little penguin (Apr 3, 2015)

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 ?


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## lenny (Apr 3, 2015)

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.


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## pdx (Apr 3, 2015)

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.


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## crohnsinct (Apr 3, 2015)

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!


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## Tesscorm (Apr 3, 2015)

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:


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## Mehita (Apr 3, 2015)

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.


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## Maya142 (Apr 3, 2015)

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!


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## lenny (Apr 4, 2015)

*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.


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## lenny (Apr 4, 2015)

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?"


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## Tesscorm (Apr 4, 2015)

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??


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## crohnsinct (Apr 4, 2015)

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.


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## Rose (Apr 4, 2015)

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.


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## Rose (Apr 4, 2015)

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.


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## Clash (Apr 4, 2015)

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.


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## lenny (Apr 4, 2015)

I was terrified of Remicade, but now I just want to get it started.  I hope my son will come around soon.

Thanks everybody!!!


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## Maya142 (Apr 4, 2015)

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!


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## lenny (Apr 7, 2015)

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!


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## my little penguin (Apr 7, 2015)

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


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## malorymug (Apr 7, 2015)

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.


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## crohnsinct (Apr 7, 2015)

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!


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## Rose (Apr 7, 2015)

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.


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## lenny (Apr 7, 2015)

my little penguin said:


> Lenny
> Focus on the word Possible side effects
> Or potential meaning they may never happen
> 
> ...


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.


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## Clash (Apr 7, 2015)

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.


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## Tesscorm (Apr 7, 2015)

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.


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## Maya142 (Apr 7, 2015)

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.


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## crohnsinct (Apr 7, 2015)

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


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## positivemum (Apr 7, 2015)

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/


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## lenny (Apr 8, 2015)

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!!!


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## lenny (Apr 11, 2015)

Clash said:


> 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?


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## Clash (Apr 11, 2015)

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.


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## Mehita (Apr 11, 2015)

No hair loss here. 

I hope your son decides to try Remicade. Like someone else said... it gave our son his life back.


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## lenny (Apr 12, 2015)

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!


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## Mehita (Apr 12, 2015)

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?


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## Clash (Apr 12, 2015)

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!


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## Maya142 (Apr 12, 2015)

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!


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## crohnsinct (Apr 12, 2015)

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!


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## lenny (Apr 13, 2015)

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?!


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## Mehita (Apr 13, 2015)

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.


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## Mehita (Apr 13, 2015)

I can't find the article I'm thinking of, but maybe this will be of interest....

http://reference.medscape.com/drug/remicade-infliximab-343202#4


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## my little penguin (Apr 13, 2015)

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:
> ...


From
http://www.aaaai.org/conditions-and-treatments/allergies/anaphylaxis.aspx


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## CarolinAlaska (Apr 14, 2015)

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.


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## lenny (Apr 16, 2015)

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.


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## CarolinAlaska (Apr 16, 2015)

I hope that doesn't amount to anything, Lenny.


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## positivemum (Apr 16, 2015)

Good luck with it! I hope it's the answer


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## my little penguin (Apr 16, 2015)

That tends to happen a lot with the blood test.
Our Gi only does the skin test


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## crohnsinct (Apr 16, 2015)

^same here. Going for o's yearly check tomorrow


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## lenny (Apr 16, 2015)

Negative results, so I guess we're moving ahead with the Remicade, first of next week.


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## lenny (Apr 16, 2015)

Why are so many people suffering so terribly with Crohn's if Remicade is so great?


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## Jmrogers4 (Apr 16, 2015)

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...


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## Maya142 (Apr 16, 2015)

Good luck with Remicade!! Hope his first infusion goes smoothly!


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## Farmwife (Apr 16, 2015)

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


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## lenny (Apr 17, 2015)

Jmrogers4 said:


> 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.


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## Maya142 (Apr 17, 2015)

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.


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## crohnsinct (Apr 17, 2015)

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!


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## lenny (Apr 17, 2015)

http://thegreatbowelmovement.org/remicade-azathioprine-superior-either-one-alone/


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## lenny (Apr 17, 2015)

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?


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## Clash (Apr 17, 2015)

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.


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## Clash (Apr 17, 2015)

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.


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## lenny (Apr 17, 2015)

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!


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## lenny (Apr 20, 2015)

New Remicade apt set for Thursday at 1:30.


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## lenny (Apr 21, 2015)

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..


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## malorymug (Apr 21, 2015)

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


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## malorymug (Apr 21, 2015)

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.


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## my little penguin (Apr 21, 2015)

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?


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## Maya142 (Apr 21, 2015)

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!


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## lenny (Apr 21, 2015)

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!!


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## malorymug (Apr 21, 2015)

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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## my little penguin (Apr 21, 2015)

http://www.usatoday.com/story/money...bell-expands-recall-to-all-products/26106353/

10 people over 5 years of products


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## lenny (Apr 24, 2015)

My son had the first Remicade infusion yesterday and everything went fine. 

Curious though, he wasn't given Tylenol or Benadryl first.  I thought that was normal?


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## positivemum (Apr 24, 2015)

We are in the UK but my son wasn't given any equivalents to tylenol or benadryl. We were told if he reatced they would give him piriton( antihistamine) and carry on with remicade. He has been fine

Glad the first one is done


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## my little penguin (Apr 24, 2015)

Depends on the clinic and the Gi .
Some give both some give one and some give none.


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## Mehita (Apr 24, 2015)

DS gets both, but it even varies within our clinic. Another boy we know sees a different doctor here and he doesn't do pre-meds. Go figure.

I've never questioned it because I don't want to rock the remission boat.


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## Jmrogers4 (Apr 24, 2015)

No tylenol or benadryl here he does get methylprednisolone which has only been a recent addition and not because he reacted, his GI said he read studies that it could help prevent antibody development.


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## Sascot (Apr 24, 2015)

Glad it went well


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## lenny (Apr 24, 2015)

In layman's terms, does anyone want to explain what the Remicade is going to (hopefully) do for my son's intestines?  How does it work?


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## Mehita (Apr 24, 2015)

It's going to block the cells (?) that cause inflammation. Without inflammation, his intestines will be able to heal and act normal again in terms of absorption and digestion. Inflammation can also cause pain, so if he's experienced that before, it should subside.

Remicade is also pretty good at preventing abscesses and fistulas. I don't know the science behind this though.

Humira works the exact same way, but it's made from human protein instead of mouse protein.


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## crohnsinct (Apr 24, 2015)

early on the docs thought the Tylenol and benedryl prevented allergic reactions but our doc says now they are realizing it doesn't much help and that if you are going to have a serious reaction you will regardless.  So now at our clinic no pretreating unless there is a highly allergic kid and they get iv steroids first.


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## Maya142 (Apr 24, 2015)

M was given Tylenol and Benadryl when she was on Remicade the first two times. The third time she was given steroids because of the risk of reaction (since you're not supposed to go on and off Remicade). We did ask about Tylenol and Benadryl but her rheumatologist said they didn't do much.


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## lenny (Apr 24, 2015)

Why does Humira have to hurt so much more?


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## my little penguin (Apr 24, 2015)

Humira hurts because it is given IM and the ph of the med itself causes the burning .


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## lenny (Apr 24, 2015)

I'm just now noticing that my son's cheeks are quite rosey..should I be concerned?

They gave us no after instructions.  I asked if there was anything special we should do, should he take it easy..?  The nurse said, no, just like normal.


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## crohnsinct (Apr 24, 2015)

IDK about the rosey cheeks but yes to normal activities here.  You can call the oncall and ask about the cheeks.  It is your first time after all and you weren't given a list of what to watch for.  That is an easy call for them to answer.


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## Mehita (Apr 24, 2015)

DS gets rosy cheeks too ever since starting Remi. No idea what causes it, but no one seemed too concerned when I brought it up. DS sunburns easier now too.


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## malorymug (Apr 24, 2015)

We love our Remicade cheeks. Definitely rosey. I used to check for fever because I wasn't used to seeing color, but now it is almost normal.


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## Farmwife (Apr 25, 2015)

Yes, Grace gets the rosy cheeks. I've learned to think there cute too.


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## my little penguin (Apr 25, 2015)

DS got rosy cheeks as well
No issues there


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## araceli (Apr 27, 2015)

For more than a year and half they did not pre-medicade my daughter before remicade. She started to have signs of finger vasculitis after infusion, so she gets benadril and cortisone before infusion now. Rose checks or hot flashes are normal as long as they come and go. They will feel warm to touch. I hope remicade do wonders for your kid.


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## lenny (Apr 29, 2015)

Anyone found a diet that works particularly well with Remicade.  My daughter's friend who has Crohn's recommends the food map diet.  He is on Humira.


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## Catherine (Apr 30, 2015)

The FODMAP diet is a IBS diet out of Australia.

Its a low lactose, low gluten, and low fructose diet.


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## lenny (May 19, 2015)

So, my son has had 2 infusions now and he's almost weaned off the steroids, but he's started having pain when he poops again and is tired after.  Here we go again, or give the Remicade more time?  Ask for a FCP?  What do I do now?  

We had a nice couple weeks anyway..


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## Jmrogers4 (May 19, 2015)

Still in loading dose stage?  Give it more time.  We did not make it to the first 8 weeks time frame and had to do every 6 weeks and increased dosage.  
When is the next infusion?


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## lenny (May 19, 2015)

Son had infusion #2 on the 8th and is due 4 weeks after that for #3..early June.


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## Tesscorm (May 19, 2015)

Everyone responds differently to remicade - some quickly but some take a bit more time.  If I remember correctly, when you say two doses, those are just two of the loading doses, right?  If yes, it hasn't been very much time.

It certainly never hurts to have more info but just keep in mind that an FC test might have limited value right now right now in helping to determine treatment...  His symptoms already indicate that there is likely inflammation present so would a high FC result mean treatment isn't working or just that he's not completely healed yet??  I'm not sure if steroids can eliminate all inflammation that quickly??  However, if he's had an FC test before, it would give you a comparison to see if there has been any improvement at all from the steroids and remicade??  And, if this is his first FC test, it would give you a baseline from which to compare future tests.

I know this has been discussed but can't remember offhand - will he try exclusive EN?  Liquid diet only for a little while?  It might help alleviate his symptoms and/or push him into remission until remicade has a chance to kick in.

I would ask his GI about the Prometheus test (there's a more specific name for it - hopefully, someone can offer it??) - the test will measure the amount of remicade in his system.  If he is not at a high enough level, remicade will not be able to help.  It's done immediately before an infusion to see if the amount of remicade (both frequency and dosage) are lasting from one infusion to the next.  After my son's three loading doses, the day before his first '8 week' infusion, he was tested.  The test showed no remicade left in his system and he was changed to a 6 week cycle.  He was tested again the day before his first '6 week' infusion and this test showed adequate levels at the 6 week mark (which is where we've stayed for two years now).  

The test is quite expensive and there may or may not be issues with insurance.  Your son's GI (or clinic staff) should be able to give you some guidance with this.

I'm not sure what else to suggest...  

I hope you start seeing improvement soon. :ghug:


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## crohnsinct (May 19, 2015)

Way to early to expect Remicade to be handling all the disease and I am surprised at the early taper off prednisone.  It took my daughter 4 months before she was completely off prednisone and even then Remicade wasn't handling the whole disease and we had to add 6 weeks of EEN with a slow reintro of food. All that time lots of changes in dose and schedule.  

Give it time.  It takes a while to figure out dose and schedule but I would also be weary of the early taper.


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## my little penguin (May 19, 2015)

Same here 
A full 8 weeks from first loading dose till DS looked better 
The Med has to build up on the system and the GI tract takes a minimum of 6 weeks to heal sometimes longer 
It's not something you can rush or speed up .
Jumping meds isn't going to help either since it needs more time and neweds would just reset the clock to start over at 6-8 weeks


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## lenny (May 19, 2015)

It's just that he is having symptoms and a week ago, he was not, but I'm okay with waiting.  It's not too bad.

Yes, he has done EEN twice.  It did not work the third time.

He has been eating quite a bit of junk food.  Organic ice cream, mostly.  Hard to stop him from going overboard after going nearly 2 years without chocolate.

He's 6' and weighs 153 lbs, his highest weight yet. 

Thanks so much.  We will wait.


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## Sascot (May 19, 2015)

Fingers crossed it just needs some time.


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## my little penguin (May 19, 2015)

That would be because the Remi hasnt built up yet and he burned through it quickly


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## crohnsinct (May 19, 2015)

I would let the GI know what is going on.  The schedule isn't set in stone and they may pull him in earlier for the next infusion or increase the dose the next time. Yo shouldn't be seeing a slide in symptoms.  He is probably metabolizing the drug too quickly.


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## Maya142 (May 19, 2015)

Hope it gets better soon. It took my daughter 4 infusions, though she did see a little improvement after the 2nd one. It took even longer to find a dose/frequency that really worked for her. It's a process.

The fact that he's already had some response is really very encouraging!

Hang in there!


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## lenny (May 19, 2015)

I didn't tell the GI as he never acts as though the symptoms my son is currently having are anything to be concerned about.  When my son is suffering more mildly, I get the feeling he wants to say, "yep, that's crohn's".

I really don't like my life.


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## 24601 (May 20, 2015)

lenny, I had GIs early on who actually said to me "yep, that's crohn's" when I said I still had symptoms. I think here on the forum we're all clear on what we're aiming for these days - deep clinical, biochemical and endoscopic remission - and if your GI isn't on the same page then that's not okay. :ghug:


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## lenny (May 23, 2015)

Son had 2 painful poops last night.  He said he felt his stomach cramp, then had to go twice, in a short period of time, and when he did it burned really bad, but, there was no blood.  I called the dr. and they increased the Pred, but he doesn't want to take more of it and so far is not cooperating.  Wee!  More fun with Crohn's. (He's 18).


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## Mr chicken (May 23, 2015)

Since he is eighteen did you tell him since he isn't following the doctors advice he needs to call the doc and let the doc know and the reason why....
 I have done this many times with my kiddos.

Even If he still isn't taking the meds
 He needs to be the one to tell the Gi 
If he is old enough to make the decision then he is old enough to tell the Gi


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## crohnsinct (May 25, 2015)

Has he started taking the Prednisone?  How is he feeling?  

Second the turning matter over to him for him to talk to GI. At 18 he should probably be taking a more active role anyway but especially when deciding to act AMA.  That is fine and totally in his power but he needs to have that conversation with the GI so they can come up with another plan and the GI is well aware of what is going on. Otherwise it isn't fair to the doc who is kept in the dark, or your son who is left to suffer.  

Sounds like there are issues between you guys and the GI and maybe looking for a new doc is in order.


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## lenny (May 26, 2015)

My son did not agree to the increase in Prednisone and continued the taper, as previously planned.
Despite that, he had a much less painful poop today and seems to be feeling PRETTY good overall..more energy.

We get along quite well, in general, it's just certain aspects of the disease and treatment that cause friction.  He hates talking to his doctor!  And we will be switching to an adult GI soon.

Thanks!!!


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## lenny (May 26, 2015)

I just asked my husband if he'd done the Remistart and he said, no that it won't help us, as we were hitting our deductable anyway and after that everything is free.

But, he said he read it's only good for a year or two.  Is that correct?

My husband is retiring in 2.5 years and I'm concerned about our son getting Remicade after that.  We're planning to purchase health insurance for him at that time (he'll be 20) but I don't know what it will be, exactly and I'm kinda worried.

How's Obamacare?  Is it helpful?


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## crohnsinct (May 26, 2015)

Remistart pays for the drug portion of the infusion.  When we started on the program they paid for everything over the first $50 per infusion up to so many infusions or a total dollar amount.  As long as you had an infusion before you reached your out of pocket max they will pay.  We just got a letter stating they will pay for all of my personal drug costs over $5.  Not sure if that is a change across the whole program or because we are so many years in. 

We are in our third year of Remistart and they just keep offering it to us so I don't think the program stops after a year.  It is also not income based.  They offer it to everyone.   

From what I understand Remicade is coming to the end of their patent.  They applied for an extension but I haven't followed what happened there.  Biosimilars and generics will be hitting the market so I guess we have to wait and see what the insurance companies decide about that...fail biosimilar or generic first before going to Remi?  But again, I haven't been following this news to closely...been obsessing over fecal calprotectin and the prospect of an at home test:ylol:


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## Maya142 (May 26, 2015)

Glad you're switching doctors - it's really important he has a GI he trusts. 
It's great that he is still feeling ok despite the taper - hopefully the next infusion will make a big difference!


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## lenny (May 26, 2015)

You know everyone jokes about attorneys, but we've never had a bit of trouble with an attorney.  Everyone of them has done exactly what they said they were going to do for us.  For our family, the trouble has been with doctors and I'm not sure my son will ever trust one, completely.  If I told some of the stories, I don't think you'd believe me!  I had a doctor lie to me and then assault me right after I'd given birth.  No, I didn't press charges, it was the kind of pain that goes away in a few minutes and leaves no evidence but omg what a psycho..we found out later, he disappeared in the hospital when he was supposed to be delivering another woman's baby and none of the staff could find him for over an hour!  Yeah, very difficult (stupid, even) for us to totally trust doctors..

The father of that baby screamed at him, asking "Where were you?!"  and the doctor said, "I have no explanation." Then the father said, "If either my wife or baby die, I will kill you.  If they live, I am going to sue you!"


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## lenny (May 27, 2015)

Our son has started a vegetable garden in the backyard, which shows that he has energy to burn, which has not been the case since before he was diagnosed in March of 13!  He just a hit a new high for weight at 155 lbs.  (He had gone from 121 to 104 in September).  It has to be the Remicade..

Hopefully a small issue, he has a lot of very sore pimples on his hairline and in his scalp.  He's gotten pimples from the steroids, but not so many or so painful.  He's going to see a dermatologist next week..could this also be the Remicade?  I noticed him breaking out a week or 2 after he recieved his first infusion in April. 

He's been slim his whole life, but now he has a bit of a belly and his arms look puffy.  Steroids?  He's still slightly underweight for his height..


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## Mr chicken (May 27, 2015)

If your prone to skin issues remicade doesn't cause them but will bring them to the surface .  Sounds like folliculitis 
Glad your seeing dermo next week


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## lenny (May 27, 2015)

He was able to see the dermatologist today and she thinks that's what it is.  She prescribed some creams, but said he could try soaking his head in vinegar/water first and see if that clears it up.

He ended his Prednisone today.


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## 24601 (May 28, 2015)

That's great that he's feeling energetic! I'm sure the activity will help redistribute any steroid weight gain in no time and the puffiness from any steroid-related fluid retention should go fairly quickly too.

So good to hear that the Remicade is helping!


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## crohnsinct (May 28, 2015)

We get folliculitis a lot around here also.  Instead of drugs our first line defense is a strong anti bacterial soap...we use Hibiclens.  That is what they use in our hospital prior to surgery and such. You can get it OTC anywhere. Luckily we are able to control it with just Hibiclens.  You also have to wash his towels etc daily as it is pretty contagious.


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## lenny (May 31, 2015)

They didn't tell us it was contagious.  My son does his own laundry and I use vinegar instead of fabric softener..hopefully, that will be good enough.  One of the creams they prescribed for his head (or his face) was over $200..

Yesterday, noon:  My son is in his garden, mostly covered, except his FACE.  Beautiful, sunny day.  I ask, "Did you put sunscreen on, yet?"  "No."  "Please do."  "I will in a bit.."

The biggest news of all though is my son had a "GOOD sh*t" yesterday.  I don't think I've EVER heard his say that!!! 

Next infusion 6/4.


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## lenny (Jun 9, 2015)

My son had a tiny bit of blood when he pooped yesterday and his pooping is generally not completely pain free, but other than that he feels great.


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## Mehita (Jun 10, 2015)

Maybe a fissure? When my son started to have more regular and more formed BM's his bum was not happy. He had become so used to mushy, soft BM's, having normal ones put pressure on the skin down there and he had a small tear. It cleared up ont it's own in a week.

So glad to hear he's feeling well!


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## Maya142 (Jun 10, 2015)

Great to hear he is feeling better!!


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## lenny (Jun 17, 2015)

Met my son's new GI yesterday and it didn't go super great. 

He starts taking the history, and I could tell right off that he wasn't the most sensitive individual, but that's not super important.  My daughter (the RN) tells me a lot of popular doctors are actually the worst doctors (their patients tend to have long recoveries or die).  So a great personality doesn't mean a great doctor..

But, he said a few things that didn't sit right with me.  He asked why we'd gone with Remicade instead of Humira and I told him because my son was so weak and depressed at the time, that I knew he wouldn't be able to give himself the injections consistently, on time..especially since I'd read everywhere how painful they are.  (It was a struggle  to get him to take his vitamins and Prednisone at the time).  He said, "He would have done it, if he had to!"  And we actually argued about this for several minutes!  I finally said, "I don't know why we are arguing about this.  I saw my son, you did not.  I was  worried that he might KILL HIMSELF if he had one more painful thing to deal with.."  He said, "When people get diabetes, they think they can't give themselves injections, but they ALL do it!"  "Idiot" popped into my head. 
Is he totally unaware of the teen, male suicide rate?

He also said that Humira is not painful.  "That's what my patients report."

He brought up possibly adding the other drug with Remicade..the one that takes remission rates from 44% to 58%.  (He said his experience was more like 55% to 70%)
Yet this drug doubles AGAIN your chance of getting an incurable cancer, which they see almost entirely in young men.  I'm bad at remembering names of drugs.  Does anyone know which one I'm talking about?

Then I brought up deep mucosal healing and he said, "If we decide that's our goal.."

So, according to him deep mucosal healing is optional.

He recommended doing an FCP and scoping my son in 6 months to a year.

All thoughts appreciated!


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## malorymug (Jun 17, 2015)

Is it methotrexate? That's what my son takes with Remicade.


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## lenny (Jun 17, 2015)

No..I thought it had "pan" or "een" in it. ??


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## Maya142 (Jun 17, 2015)

Azathioprine? It's often used with biologics.

Sorry to hear you had such a bad appt. You shouldn't have had to justify Remicade over Humira - that's just silly. Will your son stay with this GI or find another?


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## crohnsinct (Jun 17, 2015)

Anti tnf is anti tnf.  I agree with Maya, method of delivery, what does it matter to him? 

I also think he is talking about azathioprine.  Now while it does increase chances of cancer keep in mind the absolute numbers are still only 6 in 10,000.  It does have a good track record of lengthening the time you can stay on a biologic and also keeping antibodies at bay.  There is some research back lash against the thioprines and papers coming out in support of Methotrexate to also lengthen time you could stay on the anti tnf's, keep antibodies at bay and with less risk of the cancer so you may want to research that and ask the doc about that. 

Sounds like this doc may not be on the same page as you guys and I would be looking for another doc that you feel a better connection with in regards to treatments etc.  I am wondering what this doc's take on testing levels is given all the recent research we have been posting here.


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## lenny (Jun 17, 2015)

Maya142 said:


> Azathioprine? It's often used with biologics.
> 
> Sorry to hear you had such a bad appt. You shouldn't have had to justify Remicade over Humira - that's just silly. Will your son stay with this GI or find another?


Thank you, yes, I believe that was it!  Any advice on whether to add it?  I could tell he didn't think Remicade would work alone for more than a few years. 

Since we got off on the wrong foot, I may try another doctor in the same group.  It's 7 minutes from our house.  And my son hates going to the doctor and the longer it takes, the more he hates it.  So, finding a nearby doctor is how I got him to not stop going to the doctor!


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## Maya142 (Jun 17, 2015)

M is on Imuran (Azathioprine). She's had no side effects besides nausea when increasing the dose. We added it when she was on Remicade, both to prevent antibodies and to give Remicade a "boost". M had a bad reaction with MTX but really no issues with Azathioprine. We did do weekly bloodwork in the beginning to make sure her liver tolerated it and her WBC was ok, and everything was fine. No increase in infections or anything like that.

Many doctors like to use drugs like Imuran and MTX to prevent antibodies so that biologics last longer, particularly since there are limited biologics.

I agonized and agonized about adding MTX/Imuran to anti-TNFs but honestly it made a big difference to both my girls. The risk is still small and for us the benefits were huge.

Hope you can find him a good doc!!


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## AJC - Australia (Jun 17, 2015)

I was 50kg and had 3 resections of the gut by the time i was 27 years old….i started remicade and it got me well again. I am still on it now, ten years later!


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## lenny (Jun 18, 2015)

Realistically, if Remicade stops working for my son, he's going to end up dying over time, piece by piece, no?  What other options are there?

Humira.  Then what?  I'm not trying to be morbid, I am asking because I need to know how important it is that he not build antibodies.

Would you risk adding it with an 18 year old male?


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## Mr chicken (Jun 18, 2015)

I did add it to an 8 year old male who is now 11.
There is way more risk of dying just riding in a car.
If he is driving and age 18 the numbers go through the roof
Crohns is the least likely thing to cause death for a teenager in terms of statistics


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## crohnsinct (Jun 18, 2015)

Yeah sorry but I feel the need to set the record straight here.  The mortality rate from Crohn's alone is extremely, extremely low.  The biggest risk is complication from under or untreated disease.  So if the doc is telling you to treat the disease the best way possible they would add this or that, then you have to weigh that with the risks of the drug. 

I can totally understand your hesitation to add Aza so why not have a discussion with the doc about alternatives?  As has been said on here many times, many patients choose to add Mtx and like I said before recent research supports it's use to keep antibodies at bay and extend the life of Remicade.  Pretty sure I posted a link to a video on the topic.


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## crohnsinct (Jun 18, 2015)

Here is a link to the thread where I posted the Aza/Mtx video.  http://www.crohnsforum.com/showthread.php?p=869906#post869906


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## Maya142 (Jun 18, 2015)

There are still options after Humira - Cimzia, Entyvio, Stelara, Simponi. There are more in trials. That's not to say you shouldn't add an immunomodulator like Imuran or MTX if you decide to, but just that you should stay positive - there is a lot of research happening, very promising research.


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## theresad (Jun 24, 2015)

@lenny you sound alot like me when I get going with myself in my head . And your son also sounds alot like mine (he was DX'd at 17 and is now 21). He is a smart, willful kid, and it is hard to balance letting them begin to control their own care, while also making sure they don't do anything stupid. It is a partnership, and an interesting process to be sure....

We're about to start Remicade as soon as insurance clears. He has been on Imuran and it is no longer working. For what it's worth, GI plans to keep him on Imuran (AZA) to give Remicade the best chance of working). He says we can drop it off, once he gets to remission. He is slightly dismissive of the risks, which bugs me a bit for obvious reasons, though in his defense, he knows the stats and he is speaking pragmatically vs. emotionally. Our GI's goal is 100% remission or else, so he is aggressive.

Anyway, the reason I was writing was because you raise the question about options for when Remicade fails. What do we do next. I think the same way alot - one of the most awful things about this disease is that even when things are calm, you're just waiting on pins and needles for the other shoe to drop. It is really awful - the disease just sucks. Period.

But then I have to get myself under control and remember to go one step at a time. I also try to reassure myself that the research being done right now is incredible, and there are new treatments on the horizon. But most importantly, we should try our hardest to take the next problem when it comes, and not before. There is too much to deal with as it is, without trying to forecast the future. I fight with myself every day about this and I feel for you going through the same inner monologue.

So best of luck to you and your son, and I wish you BOTH a long success on Remicade, and strength to manage whatever comes next, if and when it does.


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## CrohnsKidMom (Jun 27, 2015)

Theresad, I am having that same inner monologue!  My 10 yr old son is switching from MTX injections to Remicade with a lower dose, oral MTX.  We are doing the preliminary tests-chest X-ray, TB, etc., and hopefully it will be underway in no more than a couple weeks.  
Crohnsinct, this is what our GI does-Remicade plus MTX for boys, Remicade plus Aza for girls.  And our GI reminded me we have to deal with the devil we know, not worry about the "what ifs". That's hard.
And Lenny, I share those same worries, but our GI said to think in terms of a 5 yr plan.  He said there is a lot of promising research on the horizon, and who knows what the next few years will bring. 

It's great to have the support I find here, and to know I am not alone on this crazy ride.  I hope I can share a Remicade success story soon!


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## Mehita (Jun 27, 2015)

Thanks, theresad! I needed to hear that as well. My DS is building antibodies which has sent me into a bit of a panic and wondering what he'll do next. You're right, though... I need to focus on the short term and not borrow trouble. He's doing fine right now. He'll be fine awhile longer. We need to enjoy this as long as we can.


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