New Member - concern about Remicade

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Shansmom

Shansmom

Joined
Feb 9, 2012
Messages
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My 12 year old daughter was diagnosed with Crohn's March 2011. She has been on Asacol since then and did courses of Prednisone and Entacort. I thought she was doing so much better. However around Christmas she started having symptoms again and she gained only 1 pound over the past year. Her labwork shows her inflamatory markers are still elevated -- but not as bad as they were in March. An ultrasound last week showed inflamation still in her ileum. I know we have very experienced doctors -- but I need to know we are making the best decisions for her. Her doctors want her to go on Remicade and it breaks my heart to think of her having to take IV meds. Plus her doctors say the Remicade would be forever -- or at least until a cure is found! I'm worried about complications and long term side effects. I'm concerned that there is something in between Asacol and Remicade that we could try first. I hate knowing this is her future. I know you are all in the same boat and would appreciate any and all advice!
 
I took Remicade as my first biologic. I have a severe fear of needles, ESPECIALLY IVs, but I knew that if it would help me I would be able to do it. On my third infusion I had the anaphalactic reaction. I am forever grateful to the nurse that noticed the warning sign cough and was able to stop the reaction before it really did damage. It was however the most fightening experience of my life.

Unfortunately for this disease it requires life-long medication. Even with surgery medication is almost always essential to maintain a good quality of life. It is depressing to say the least and I deal with the fact I will have to be poked by needles for the rest of my life, but to live pain free is even MORE important to me and that is why when I get sad about having to do ANOTHER injection, I have to think about how it is really helping me. I surround myself with caring loving people and it helps to be more positive about the fact of 'forever' medicine and care.

I wish her all the best of luck, and to enter remission quickly and hopefully remain in for a long time.
 
Wow, Bri, thank you for such a quick reply! So I'm not sure from your post, but did you stay on Remicade or move to a different med? And are you doing well? I can't imagine going through that myself let alone my daughter. Thank you for the good wishes and, again, the quick reply.
 
Shansmom said:
Wow, Bri, thank you for such a quick reply! So I'm not sure from your post, but did you stay on Remicade or move to a different med? And are you doing well? I can't imagine going through that myself let alone my daughter. Thank you for the good wishes and, again, the quick reply.
Click to expand...

Oh I apologize, I should have clarified all the injection talk! After the reaction I no longer continued with the Remicade. The reason why I felt compelled to share my side of the story with the Remicade is because no one told me just how bad the reactions could be, so I just wanted you to have all the information!

I did switch to Humira after the Remicade and was on that for about a year and a half (up until the last month when it was evident it was no longer working). However, if I was 12 and this was going on I would MUCH rather have an IV every so many weeks than an injection in my stomach/leg every other week. I really became severely stressed around the time it came to get my Humira shot and am *almost* relieved I do not have to get it anymore. I am now looking forward to my next biologic.

However, I can atest to the fact that during my first two Remicade infusions, I felt SO much better and would have stayed on the medicine if not for the reaction. Also, I work with a teenager who is on Remicade and he says it is his miracle drug (which I am sure others could also agree with).

I have gone through a LOT of medicine in a short period of time, and the injectables are the only ones that have significantly improved my symptoms.
 
My daughter is about to start Humira TOMORROW morning at 9am and I too am terrified of this class of drugs.
It wasn't comforting when a longtime friend who is also a physician of 30+ years said, when told V was to start Humira, "wow, that could really f**k up her immune system".
So I totally understand your reluctance, I held off on any drugs for 3.5 years for V.

I'd suggest you research formula feeds; I just joined this forum today and have found threads on this. V. has had much success with it, and has been on it since dx. She also has ileal disease and that is a location that typically reacts well to formula feeds; you may want to try this for your daughter as a precursor or adjunct to drug therapy.
 
Remicade worries

Shansmom,

I know exactly how you feel. My 14 year old daughter was diagnosed at 8years old. She started out on Asacol. After a bad flare she was put on 6mp (a pill). This too they say can have bad side effects.Jess was in remission for 2 years while on 6mp. Jessica ended up having surgery in March, 2011. After that they put on Remicade. Jessica was in remission before they put her on Remicade, so I'm not sure if the Remicade is actually helping her or if it is strictly from surgery. Each time we have to go for an infusion I feel sick. The one thing that I noticed is that Jess has been extremly thirsty after starting Remicade. Her GI says it's not a side effect, but I think it could be. Her GI said they want her to stay on it until she goes to college. We don't plan on her staying on it that long. For now we are just going one infusion at a time.

Maybe you could ask your doctor about the 6mp. It's still a terrible drug, but it is not an IV. I hope your daughter feels better soon.
 
imaboveitall,

Sorry to hear that your daughter will be starting Humira. I feel there has got to be a better way. I keep praying. We may be switching from remicade to Humira soon.
When you say formula feeds are you talking about the eternal nutrition?
 
Hi Shansmom and :welcome:

I'm sorry to hear that your daughter is having problems...:hug:

I agree that Enteral Nutrition may be worth looking it and discussing with your docs. We have a sub forum you may like to look through...

http://www.crohnsforum.com/forumdisplay.php?f=161

There are also other alternatives that you may want to research like Low Dose Naltrexone (LDN)...

http://www.crohnsforum.com/forumdisplay.php?f=32

Doctors do have varying views on what approach to take, some take the step up approach and others the top down, which is starting with the big guns straight up. In view of the fact that your daughter has already tried Asacol, with what would appear to be limited effect, I wonder why they have skipped a whole class of drugs between the 5ASA's (Asacol) and the biologics (Remicade/Humira). I am referring to the immunosuppressants (Imuran/6MP).

As scary and heartbreaking as it is just know that there are many people here, both adults and children, that have had great success with immunosuppressants and biologics with no side effects.

Good luck and welcome aboard!

Dusty. xxx
 
My daughter just finished remi...unfortunately it didn't work for her...she was on it about 6 mos. We went from pentasa to remi...although she doesn't yet swallow pills either. We had no issues with remi other than the fact that it didn't work lol. Izz actually enjoyed going to the infusion unit...the staff was wonderful. Good luck with whatever you decide, and hang in there,mama!
 
Hopefulmom, yes, enteral. Formula feeds via NG tube/feeding pump at night while she sleeps.
NOT exclusive enteral, as she has always eaten whatever she wants, even at the start. It's my understanding that this is the less common way, that most are restricted to formula ONLY for varying degrees of time.
V. went from 59lbs,55in at dx to 99lbs FOUR months later. Now she is 63 in and 128lbs. I wouldn't change the formula feeds for anything.
 
Welcome Shansmom! I know exactly how you feel! My son has been on Humira for almost a year now w/o problems. He was on 6mp prior to that. We still have him taking a half-dose of Asacol daily as well. Compared to the other meds, that stuff seems like he's eating M and M's:)! Every move you make will bring its doubts with it! Just remember, any time she is starting something new, they will keep an extremely close eye on her bloodwork to be sure all is going as planned. Good luck, whatever you decide:)
 
imaboveitall

Ok, I know about the ng tube. My daughter had it in the hospital, but it was for draining her stomach. I wonder if the ng tube your daughter uses it smaller than the one Jess had in the hospital. Jess would have a hard time with that. I give your daughter a lot of credit. That's great that she has gained weight and inches. Jess is at 61. The doc say she is done growing.
 
Hopefulmom, yes, the tube size makes a BIG difference.
V uses a small infant sized tube. It's maybe slightly larger than a piece of cooked spaghetti in diameter.
 
Hi Hopefulmom,

I agree and wish that soon there will be less risky medications! But, in the meantime, I suppose we make the best decisions we can to give our children every opportunity to live healthy and actively.

My son, 17, is also on enteral nutrition. He was diagnosed in May, did six weeks of exclusive (no food other than clear fluids - broth, pop, jello, etc.), 7 nights per week and then his dosage was cut to 1/2 the amount, 5 nights per week. As imaboveitall has said, the nutritional benefits are awesome! My son was always a picky eater and I always worried about his nutrition - without a doubt, he's getting better nutrition now than ever before! He had lost approx. 20 pounds before being diagnosed and regained that weight plus more! He went from approx 150, down to 127 and, by Aug/Sept, was up to 160 - he was even beginning to worry about the weight gain! LOL But, he has stabilized at 155-160.

As far as the tube size, I believe his is 6-FR (I can check at home if you'd like) and, if size does indeed create difficulties for some, this size has not been an problem for him.

His only medication so far has been Nexium, an antacid.

I don't expect (but can hope :)) that EN will be able to maintain permanent remission but it's a treatment I can certainly accept.

Good luck!
 
Thank you Tesscorm and imaboveitall,

The tube Jess had in the hospital was very fat. It was a tough time for her. She did have one put down her nose once checking for something a long time ago. It was much smaller than the one in the hospital. It's a good thing to keep in mind in case her meds stop working. If it were up to me I would have her start tomorrow, but I'm not sure how Jess will feel. When the time is right I will mention it to her. I would have a tough time putting her on Remicade (which she is on now) along with 6mp. Jess was on TPN for several weeks before her surgery. Your right at least I knew she was getting all of her nutrition. In the meantime I am thankful for all the good days.
 
Hi Shansmom - My daughter is 15 years old and was diagnosed just over 1 year ago. She has been on Remicade for 1 year now and is doing well. Her daily medication is Pentasa and she goes for her Remicade every 6 weeks. I know that 8 weeks is the norm, but she was starting to show symptoms at 6 weeks, so instead of increasing her dose, they shortened the length. She has been doing incredibly well this past year. Living a normal teenage life right now. Good luck with whatever direction you decide. It was a difficult choice for us, but I believe in her case it is working miracles.
 
Welcome to the forum! I totally understand how you feel. These drugs are scary, but are also amazing. The current theory is the top-down approach, especially for kids and for puberty, so they don't miss their growth spurts. Totally worth researching all your options and discussing it with your doctor.

Remicade was not all that bad, really, inserting the IV was the hardest part. We would use numbing cream beforehand to help. Benadryl and tylenol were given before each dose and then it's the long wait - a couple of hours to infuse. The nurses were all nearby during the dose, but we never had any complications. And it worked great! My son, 10, had energy and gained weight for the first time in a year. But he developed antibodies after 8 months, which is really common, so we just switched to Humira. Good luck to you and your daughter.
 
Hi Shansmom,
I have a 14 yr old who was diagnosed at age 11yo. She also had an allergic reaction to remicade. We are now trying a new treatment called Low Dose Naltrexone or LDN. I am going to be keeping everyone posted on how it is going. I highly recommend trying the enteral nutrition if your daughter will cooperate with it. My daughter did not.
 
Kimmidwife

I read about LDN a while ago. It looks promising. Did your GI prescribe it? We are going to the GI soon to discuss other options.
 
Last edited:
Thank you to everyone! I couldn't believe it when I logged on tonight and saw all the messages. After reading so many of your stories, I feel like I'm not alone. I love seeing the pictures of your beautiful children on your posts. You guys give me hope.

In terms of meds -- one of the meds we are going to tak to the doctors about on Tuesday is the 6mp. I will ask about the other suggetions as well. Thank you all!
 
Shansmom, ask your doc about using formula feeds even if you also use drugs. The guaranteed nutrition is such a relief, and according to Violet's doc, the formula actually "blunts" (his word) the systemic effect of cytokines. He says the formula feeds are why Violet has had no growth/ development issues and has great global health DESPITE active Crohn's in her TI.
She managed to go 3.5 years on just formula feeds though she has now just begun Humira as her labs have worsened and her energy is nil.

In V's case, we opted to go straight to Humira, the "top down" approach, rather than try 6mp. She did try a month of Pentasa in Oct when first her fatigue became bad, which did absolutely nothing for her.
 
Hi ShansMom,

It's great to know you're not alone and other people understand, doesn't it? I felt the same way when I found this group. My son was diagnosed at the age of 13 (2 years ago). We did a short cycle of predisone and he was started on Pentasa & Prevasaid. His doctor has raised his Pentasa twice he's now up to 5,000 mg a day (2500 in the am and 1500 in the pm) - it's made a world of difference for him.

IF you have time, do your research and talk with your daughter about what's available. Sounds like you have a good relationship with you doctor, and I'm nNot sure if you're near a Children's Hospital - but if you are, they *really* know about working with Kids with IBDs (and other diseases). They'd be a GREAT resource to tap into (even if it's for testing purposes while sticking with your GI.

Good luck and God Bless...

Shell
 
ChampsMom said:
Hi ShansMom,

It's great to know you're not alone and other people understand, doesn't it? I felt the same way when I found this group. My son was diagnosed at the age of 13 (2 years ago). We did a short cycle of predisone and he was started on Pentasa & Prevasaid. His doctor has raised his Pentasa twice he's now up to 5,000 mg a day (2500 in the am and 1500 in the pm) - it's made a world of difference for him.

IF you have time, do your research and talk with your daughter about what's available. Sounds like you have a good relationship with you doctor, and I'm nNot sure if you're near a Children's Hospital - but if you are, they *really* know about working with Kids with IBDs (and other diseases). They'd be a GREAT resource to tap into (even if it's for testing purposes while sticking with your GI.

Good luck and God Bless...

Shell
Click to expand...

Hey ChampsMom -- actually we are at CHOP Philadelphia. I agree that the childrens hospitals do seem to know what they are doing. It's nice to hear a success story and that your son is doing well.
 
imaboveitall said:
Shansmom, ask your doc about using formula feeds even if you also use drugs. The guaranteed nutrition is such a relief, and according to Violet's doc, the formula actually "blunts" (his word) the systemic effect of cytokines. He says the formula feeds are why Violet has had no growth/ development issues and has great global health DESPITE active Crohn's in her TI.
She managed to go 3.5 years on just formula feeds though she has now just begun Humira as her labs have worsened and her energy is nil.

In V's case, we opted to go straight to Humira, the "top down" approach, rather than try 6mp. She did try a month of Pentasa in Oct when first her fatigue became bad, which did absolutely nothing for her.
Click to expand...

Hello Imaboveitall -- sorry for asking what is probably a dumb question, but does a formula feed involve the tube feeding? I am concerned about Shannon's development at this stage. Thank you for the suggestion. I'm hoping V finds some relief with the Humira.
 
Shansmom, Yep, via NG. Violet places the tube each night at bedtime and removes it as soon as she wakes up in the morning. It takes literally ten seconds to do this.

I cannot emphasize enough my belief in these feeds, and her doc is a BIG advocate of them. Her growth and development and global health are excellent, and she was at death's door when diagnosed. Even if one uses drugs, the feeds are still good; her doc and I both agree that she'll stay on them until her growth is complete even while using meds.
The formula feeds don't just provide nutrition, they have an anticytokinergic role. They actually reduce the systemic effect of inflammation.

Believe me, I know how you're feeling re:drugs. I kept V off all drugs for 3.5 years.

Julie
 
So we had the doctors visit on Tuesday. After a very long discussion we agreed to try Remicade. I was so stressed out about how Shan was going to take the news. Her response was: "IV? That's not so bad." And now she's planning all the things we are going to do while she is "hooked up." Such a great attitude. I'm actually now looking forward to getting started and praying it works. Shan's been declining -- every day she seems a little worse and she is starting to miss school again. She hasn't been to gymnastics in weeks. In her words, she "feels like poo"!
 
Good luck! I hope all goes well... I believe Remicade is the miracle drug for my daughter, she is 1 year in remission and counting....hping it lasts a lifetime! Or until a cure is found! Best wishes!
 
I was just writing about their great attitudes towards their illness/treatments in another thread!
It's a heartbreaking relief when they just... calmly accept what they must endure. Always humbles me.

I hope it works FAST. Do continue to update, please!
 
Thanks all. Shan was home from school again today -- along with her big sister (she has mono). All of a sudden it hit me -- what if Shan's tiredness and fever are from mono and not just Crohn's! OMG -- it's enough to make you scream. Plus they both had me running all day. I went to the office for a few hours just to get some rest! Now we are all hanging out on the couchs -- they have their ice water and I've got my glass of wine and we are going to watch the new Twilight movie -- Breaking Dawn part 1 :)
 
Ugh!! What is it with all you women and your vampires??? I've got to get to the bottom of that mystery!! I've got two teen girls and a wife who are all obsessed with %*&(ing vampires!!!

I hope Shan doesn't have mono but I assume you're going to check. Good luck!!
 
Hope you enjoyed your wine and movie, and that *both* girls are feeling better...what a fantastic attitude Shan has and hoping Remi is the answer for her!!
Dex...I don't get the vampire thing either...but its a mystery you should leave unsolved ;)
 
Oh geeze - mono! I had that while in high school (had Crohns at the time too).....kept me out of school for about a week - of course during exams!.....hope she doesn't have it too.....

Anyway - hope the remi helps quickly and well - it really has been a saver for me!
 
Loved the movie. Shan and I are "Team Jacob", my oldest is "Team Edward". Not that I'd wish Mono on anyone, but it was nice to sit in an entire Friday night with both Shan and her 16 year sister. We go Monday for the TB test at Shan's pediatrician. I am definately going to bring up the Mono possibility (though that means the poor kid will need another round of blood work). There was a terrible school bus accident in our area the other day - one 11 year old girl (part of triplets) was killed and both her triplet sisters were in ciritical condition (they just upgraded 1 to "good") along with another 11 year old boy. 17 kids in all injured. Hug your kids and never miss an opportunity to tell them you love them! (Not that any of you do miss that opportunity!)
 
How horrible.
Having a sick kid does make you shower them more with love. I'm always mauling Violet.

Re: the mono, do check it out. It may mean she has to wait to have the Remicade until it's gone.
 
Oh my, what an awful accident. Those poor parent's...:(

I hope all goes well Shan's testing, everything crossed!...:goodluck:

You betcha! Loads of I love you's and hugs here! :)

Dusty. xxx
 
Hello all. I posted on the Remicade thread too. No TB and no mono. So we have scheduled Shannon for her first infusion next Tuesday (the 28th). She went in late to school again today and slept for a couple of hours once she got home. She seems to be getting weaker so I'm really hoping Remicade is the miracle drug for her too. It is deja vu all over again! Just a year ago we were doing everything we could to get her through cheerleading season and her we are again (they had their season farewell pizza party yesterday).
 
Hi Julie! I just posted on one of your threads too. Thinking of you and V and hoping you get this fatigue thing figured out soon. Hang in there.
 
Kids are so tech savvy! I'm testing to see if the new photo Shan uploaded comes up now when I post . . .
 
Hey guys. Shannon's infusion went real well. So proud of the way she handled it. No side effects that I could see. She was wiped out last night but that could be just because of the stress of the day. She had belly pain but that is not unusual for her. She went to school today. I got to go to work today. Crossing my fingers we are on the road to remission. It's great to have this support system. Thank you all again!
 
Thanks for the fab update!!! :panda::panda::panda:

It's wonderful to hear that all went well and what a champion Shannon is! I so hope all continues to go well. :)

Dusty. xxx
 
I know that's a load off your mind mom! I hope Shannon can get back to life now!
 
*So* glad to hear it went well - I hope her energy picks up and her belly stops aching! Stress is such a trigger for the disease - so I pray with everything going well, that yah'll will be able to get into a routine with out it! (Is that even possible?! oh I pray!!!)

Btw - I *LOVE* the name Shannon... if I would have had a girl - I would have named her Shannon :eek:)
 
Great to hear how well it went ! :rosette1::rosette1:

just a thought: My daughter takes Cimzia and is aways wiped out for for first 1-3 days after her injections, so maybe that is going to be a "norm" for her after her Remicade infusions ?:heart:
 
My daughter was also always wiped out after the remicade and for the next day also. Glad to hear it went well!
 
just another plug for Remicade

I had never heard of it before my husband was practically near death almost eight years ago. He was in the hospital twice and no one could figure out what was wrong, and it took four very loooong months before a rheumatologist discovered that he had ankylosing spondylitis (hey, at least it's fun to say). After his first Remicade treatment, he was back to himself almost immediately. I really thought he was faking it because it was a complete 180 degrees from where he had been only hours before.

He still does the treatments today, every six weeks. He had a moment about six years ago where he decided he wasn't really sick so he skipped his appointment. About a week later, it was like a deja vu. Then got his treatment and bam! Happy boy again. While I'm quite sure he'd appreciate not having to do the treatments, the fact that the time spent means he can have his life back again completely outweighs the inconveniences.

They've now mentioned Remicade for our daughter and neither of us even blink at the thought. She's so miserable now that the thought of her being herself again makes it worth it. What scares me more is that it won't work.
 

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