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07-22-2014, 03:13 PM   #1
crohns_disease
 
Join Date: Jul 2014
Remicade growth

Starting remicade soon and hoping for some growth

Has anyone got any experiences/ideas how long it took to get into remission and then start gaining weight and then growing taller? Bone age suggests there's still time to grow. Thanks in advance for any answers.
07-22-2014, 03:26 PM   #2
Maya142
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I think it would depend - some people feel better immediately after Remicade, and others take 3-4 infusions. It may take a while to get into deep remission so that you grow.

It took my daughter 2 or 3 infusions before she felt better and about 6 months in we realized she had grown a little (she's 17 and we thought she was done growing, so it was quite a surprise!).

There are several members here with teenagers who have started growing after being on Remicade - Jmrogers4, Clash and Mehita come to mind.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
07-22-2014, 03:39 PM   #3
crohns_disease
 
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How often are infusions typically given? Thanks for the reply
07-22-2014, 03:42 PM   #4
Maya142
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You would have infusions at 0, 2 and 6 weeks (those are the loading doses) and then usually every 8 weeks after that, provided you don't need them sooner.
My daughter does need Remicade more frequently and has infusions every 4 weeks. Some kids will have them every 5 or 6 weeks.
07-22-2014, 03:45 PM   #5
crohns_disease
 
Join Date: Jul 2014
Thanks. Been a great help.
07-22-2014, 06:44 PM   #6
Jmrogers4
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Thanks for the tag Maya. My son is 14 will be 15 on the 31st. He started remicade on Jan. 9th and immediately gained weight. Nothing for the first 4 months as far as height but he has grown 3 + inches since April and continues to grow. He is actually hungry now days and eats like a regular teenage boy. We still have a bit of catch up growth but I think that is really happening over the next year.
We did the 0, 2, 6 weeks but did not make it all the way through the first 8 week stretch. We actually figured it was because he had gained enough weight that the dosage was not enough. We doubled the dose on his 5th and 6th infusion and did them every 6 weeks so we are trying for 8 week this time.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
07-22-2014, 06:56 PM   #7
crohns_disease
 
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Promising information, thanks for your help
07-23-2014, 04:26 AM   #8
Sascot
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No experience with Remicade. Just wanted to wish you luck, hope it works well
07-23-2014, 04:37 AM   #9
my little penguin
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It took DS three infusions to gain weight .
About 6 months later growth started back but he was only 8 at the time so normal growth .
His infusions were at a higher dose every 6 weeks until he had an allergic reaction
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07-23-2014, 07:29 AM   #10
crohns_disease
 
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Thank you, looking forward to getting started now!
07-23-2014, 08:59 AM   #11
kiny
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On my first time I took remicade the pain was gone within 30 minutes, before I left the hospital all my pain was gone. The pain we feel comes in big part from the inflammation, not just the tissue damage, infliximab will lower inflammation within minutes in the body, the actual tissue healing comes later, 2 or 3 weeks is when they can see tissue that is healed in patients.
I gained weight right after the first time I got remicade, simply because I was no longer in pain and started eating again.
07-23-2014, 11:38 AM   #12
crohns_disease
 
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How long to people typically stay on remicade for?
07-23-2014, 11:56 AM   #13
kiny
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It used to be once each time you got sick. Now it is every 8 weeks standard. There is currently no more effective treatment than remicade. There is no good answer, because there is nothing more effective than remicade and there isn't an alternative right now.

For some people infliximab becomes ineffective, and there are biologics like humira which you can switch to. But if remicade is effective...stopping with remicade is a decision you would have to make with your doctor and a personal decision. You have the chance of a relapse and the chance remicade won't work a second time.
07-23-2014, 12:00 PM   #14
crohns_disease
 
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So remicade is something that you'd be on permanently if it works properly?
07-23-2014, 12:03 PM   #15
kiny
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Well, remicade is relatively new, when I got remicade for the first time as a child, it was brand new. It was given each time you got sick. Giving remicade every 8 weeks is an even newer procedure.

But to answer your question more directly, there are people who have been on remicade for years. There will be better medication in the future, so permanent is probably relative.
07-23-2014, 02:41 PM   #16
awmom
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My son started remicade a couple of years ago. He did the loading dosage as described and then every 8 weeks. His WBC count was dipping and his inflammation was under control so now it is spaced every 10 weeks (for the past year). He is noticing a worsening of symptoms toward the end of the cycle so he may go back to every 8 weeks. The plan is for him to stay on it indefinitely unless it stops working. Remi is used as a maintenance med to keep inflammation under control. Wishing you best of luck.
07-23-2014, 04:51 PM   #17
Mehita
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My son was like Kiny and responded right away too. He was in patient at the time with a fistula, abscess, and fever. About 30 minutes after starting the fever broke, the pain went away and he wanted to go home and eat.

In terms of growth, within a month we noticed a difference. He's been on Remi eight months now and he's gained 15 lbs and 4 inches. At 14 1/2 years he's 5'2 and 100lbs.

He's been in remission for seven months and is on an eight week schedule (due for infusion #7 this Friday).
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
07-23-2014, 05:07 PM   #18
Patricia56
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At this time standard care in the US seems to be to stay on remicade (or the other biologics) indefinitely or until the drug loses effectiveness, there is a severe adverse reaction or the person simply decides to stop.

The somewhat limited research shows that most people will relapse within a year of stopping.

Remicade in particular is known for provoking severe adverse reactions in people who have gone more than 16 weeks between infusions. That's why it's not done singly or in loading doses anymore (as it was when it was first being used). So once you stop remicade you would generally not atttempt to go back on it. Instead you would move to one of the other biologics or LDN, etc.
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Badger, 18, CD, overall great guy
Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
07-23-2014, 05:09 PM   #19
crohns_disease
 
Join Date: Jul 2014
Does anyone know the success rates of remicade actually working? For all the excitement of trying it i'm still somewhat nervous about it not working.
07-23-2014, 08:29 PM   #20
Patricia56
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Here's a very new study that followed pediatric patients for 5 years. It found that 81% had a "complete response" judged based on clinician opinion and a symptom check list. They did not say what percent achieved partial or no response to treatment but I am certain some of the other 19% received some benefit - you just don't know how much.

CONCLUSIONS:

These data demonstrate sustained effectiveness of infliximab in children and adolescents with luminal CD. Durability of response is increased by concomitant immunomodulation. Clinical response is associated with enhanced linear growth, particularly when therapy is initiated early.

http://www.ncbi.nlm.nih.gov/pubmed/24865777
07-25-2014, 11:37 AM   #21
momoftwinboys
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My son felt better the day after his first infusion. Like the others mentioned he was hungry again after starting the remicade as started gaining weight. Height gain was slower. He has an identical twin and before remicade there was a 30 lb and approx 1 1/2 inch diff. Now there is less than 10 lb and 1/2 inch diff. His weight really started to increase when he added 3 boosts a day for about a month.

Good luck!
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Son (age 13) dx Crohn's October 2011 (age 10)
Azathioprine 10/2011-11/2012
Remicade October 2012
krill oil, multivitamin, liquid Vitamin D/Calcium/Magnesium, zinc, pro-thera complete probiotic.

"The decision to have a child is to accept that your heart will forever walk about outside of your body" Katherine Hadley
07-25-2014, 02:35 PM   #22
griffin123
 
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My 14 year old son started remicade in January this year and his story is very similar to Jmrogers4 son's story. He started gaining weight and growing after the loading doses, after that he only made it 6 weeks before he needed his next dose. His GI thought since he gained weight and grew that the medicine didn't stay in his body long so we doubled the dose and he now is going 8 weeks out. My son started at 76 lbs and he's now 98 lbs. I'm hoping he will be over 100 lbs before school starts. He has also grown about 2 1/2 inches since march.
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Son, Nathan 14, diagnosed in January 2013

prednisone: 01/13-03/13, 04/13-05/13
pentasa: 03/13- 11/13
6MP: 06/13- 01/14
Mtx: 01/14- still taking
Remicade:01/14- still on it!
07-27-2014, 04:04 PM   #23
Cat1653
 
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I am 54 years old and will be taking Remicade for the first time this Wednesday. Is there anybody that started taking Remicade at an older age?
07-27-2014, 05:35 PM   #24
Jmrogers4
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Cat1653, there are a bunch of "older" adults that have started on remicade. You can check out the remicade support group here http://www.crohnsforum.com/showthread.php?t=4544. My son has had tremendous results while on remicade as has many adults. I hope you find relief and remission on it.
07-28-2014, 10:57 PM   #25
lad473
 
Join Date: Jun 2012
Location: Maryland
My son started Remicade 2 years ago, when he was 10. The first year, he regained the weight he had lost and grew a little, and seemed "better." His scans showed a lot of improvement, but not fully clear. The second half of the second year has been amazing. In the 2 years, he has gained 35 lbs and about 5 inches. We don't think about it every day.

I hope the same for you.
07-31-2014, 11:09 AM   #26
vermontborn
 
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My son was diagnosed about 4 months ago after a couple of years of no growth and me constently telling the doctors something was wrong. we tried methrotrexate for a couple of months and that didn't seem to help we are on our 3rd Remicade treatment and still no growth or appetite change. I quess the way the doctor had explained it I was expected a mircle change after the first treatment. He hasn't gained wieght since starting any treatment 4 months ago. He is 14 and 96 lbs and 5'2. after reading some of the responses I am hoping we just need to give it more time and something will happen :-)
07-31-2014, 11:12 AM   #27
my little penguin
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Also make sure to add supplemental nutrition
DS drinks 2-3 peptamen jr a day
Since most kids have absorption issues and need way more calories than they can consume .
This helped DS a lot .
07-31-2014, 11:38 AM   #28
Jmrogers4
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My son was the same size and weighed 89 pounds at first infusion in January. He is now 5'4.5" and growing, weight is holding pretty steady at 106. He has couple of supplemental nutrition shakes every day. As long as the remicade is keeping the disease under control and there is no simmering inflammation going on and he is getting enough calories growth will happen. We thought Imuran was keeping my son's disease under control but growth never really happened on it. We figured out that he had inflammation going on in his small intestine that was not showing up in his labs. Once we got that under control and the remicade really kicked in growth started happening. He is 15 today is finally taller then me and you can tell he is really growing. I have no doubt it is due to the remicade and supplemental nutrition without that I don't think he would be getting enough calories as he needs way more then the standard amount.
07-31-2014, 01:46 PM   #29
lad473
 
Join Date: Jun 2012
Location: Maryland
When my son was diagnosed, he was 10.5 and had started losing weight. He was 5'0" and fell to 72 lbs. after the first 3 loading doses, he started to gain weight, but no height growth. He started to slowly grow after 6 months, but no miracle growth (as I was also hoping for). At 1 year, all the labs looked good, he had regained all of his weight plus about 10 lbs and 2 inches. Scopes shoe there was still inflammation. At about 1.5 yrs on Remicade, everything took off. He is now almost 13' 5'7" and 107 lbs. I now believe that the growth will come when the inflammation is gone and the body is getting everything it needs. I think my son's inflammation just took a long time to heal (at diagnosis, he had ulcers throughout his entire digestive tract, mouth on out, so it probably shouldn't have surprised me.).

So don't give up hope. The dramatic growth can still happen.
07-31-2014, 07:42 PM   #30
Cat1653
 
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I asked my doctor how long I need to do this and she said forever. Forever seems like a long time. How are the side effects?
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