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11-14-2015, 10:17 PM   #1
laura98
 
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My Story and Treatment Options

Hi everyone! My name is Laura and I'm 17 years old. I was diagnosed with Crohn's disease in March of 2014. When I was diagnosed, I started off with just Pentasa which didn't help much, then added 6 MP, then Remicade this past February. This past July, I was really sick for a week with high fevers. My remicade was delayed and I haven't had an infusion since then. After a month, the fever came back again and just wasn't going away. I switched doctors and the new doctor immediately made me stay in the hospital. This past September/October, I was in the hospital for two weeks trying to figure out where these fevers were coming from. My symptoms included: fevers, abdominal pain, night sweats, losing 20 pounds in about a month, fatigue. All the blood tests for infections came back negative, so the reason for my fevers was unknown. They just thought it was a symptom from my Crohn's. The MRE/CT scans I had done showed severe inflammation in different parts such as my terminal ileum and part of my colon. As a result of the hospital visit, my doctor decided to have me start on Prednisone, zinc/vitamin D supplements, and Nexium. Along with this, I am on a EEN nutrition diet (drinking 5 Boost plus supplements a day) and allowing approximately 200 calories of real food. I have currently been on this for 6 and a half weeks. My last doctors appointment was on Tuesday, and I am currently tapering down on the steroids and continuing the EEN diet for another month. In 3 weeks, I will visiting the doctor again for a follow up to see if the Crohn's is better so I can start up on Remicade again. The diet has been really tough, I MISS FOOD! I was wondering if there is anyone here currently on this EEN diet or have been on it and could let me know how effective it was for them. There's so much more I could say, but if you guys have any questions about my story, I'd be happy to share. Thanks for reading and I hope to get some comments back

Last edited by laura98; 11-14-2015 at 10:40 PM.
11-14-2015, 10:30 PM   #2
ronroush7
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Welcome to the group. I don't know anything about the EEN diet. You mentioned about starting up on Remicade again. I have heard from others about maybe if you stop Remicade and then start it up again there is the possibility of building up antibodies. Please ask your doctor about this. Best to you.
11-14-2015, 10:36 PM   #3
laura98
 
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Welcome to the group. I don't know anything about the EEN diet. You mentioned about starting up on Remicade again. I have heard from others about maybe if you stop Remicade and then start it up again there is the possibility of building up antibodies. Please ask your doctor about this. Best to you.
My doctor didn't want me to start up on Remicade yet because of the risk of developing an abscess that could lead to surgery. I'm not sure what will determine whether it's "safe" to start again. When I was previously on it, it worked really well. There was a possibility that my body wasn't getting enough of it because after getting a blood test, it showed that there was actually no Remicade in my body (my infusions became every 8 weeks). So the doctor is also considering getting more frequent infusions or increasing the dosage.
11-14-2015, 10:39 PM   #4
ronroush7
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I think it is odd that no Remicade showed up in your blood but I don't know much about if.

11-14-2015, 10:47 PM   #5
Justanothercp
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Laura98, sorry for all out are going thru. Hopefully things will stabilize soon. What other symptoms do you have? Pain, structures, diarrhea, night sweats, loud rumbles.
11-14-2015, 10:54 PM   #6
Clash
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If you were on 8 week cycle it is common that pediatric CD patients can burn through the remicade faster. So when they're tested for trough levels it can be zero. When this happens they do generally shorten the schedule or up the dose. Also, when they ran the levels test did they also run an antibodies test?

It can be that when you start back on Remicade your body will have built up antibodies to it which makes it no longer effective for you. Most often you have to move on to another med because having antibodies can cause severe reactions.

My son, age 19, was on Remicade for over 2 years. He came off to have surgery and when he started back after surgery he had a reaction at the 2nd infusion. At the 3rd infusion, starting back, he had yet another reaction. We stopped and the GI ran an antibodies test. He had built up really high antibodies so we had to switch to humira.

Before dx and at other times when he was symptomatic he has run fevers as well but generally not high fevers.

I hope things get better for you quickly.
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
11-14-2015, 10:56 PM   #7
dave13
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Welcome laura 98.The Promethius test is the standard,to my knoweldge,for anti-bodies for Remicade. It is a simple blood test that gets sent off to California labs. It detects anti-bodies. Infusions every eight weeks are the standard.Loading doses are more frequent,as you experienced.I have had infusions for sixteen months.Just had lucky 13,recently...or the next one? Hmmm.
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11-14-2015, 11:30 PM   #8
laura98
 
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If you were on 8 week cycle it is common that pediatric CD patients can burn through the remicade faster. So when they're tested for trough levels it can be zero. When this happens they do generally shorten the schedule or up the dose. Also, when they ran the levels test did they also run an antibodies test?

It can be that when you start back on Remicade your body will have built up antibodies to it which makes it no longer effective for you. Most often you have to move on to another med because having antibodies can cause severe reactions.

My son, age 19, was on Remicade for over 2 years. He came off to have surgery and when he started back after surgery he had a reaction at the 2nd infusion. At the 3rd infusion, starting back, he had yet another reaction. We stopped and the GI ran an antibodies test. He had built up really high antibodies so we had to switch to humira.

Before dx and at other times when he was symptomatic he has run fevers as well but generally not high fevers.

I hope things get better for you quickly.
When taking Remicade, I got an antibodies test and none were ever detected. So I'm guessing that my body reacted well with it. Do you think it's possible that it can form antibodies when I restart it?

What type of reaction did your son have?

Thanks for the help!
11-14-2015, 11:32 PM   #9
laura98
 
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Laura98, sorry for all out are going thru. Hopefully things will stabilize soon. What other symptoms do you have? Pain, structures, diarrhea, night sweats, loud rumbles.
Thanks for the support! Currently, my stools have been more formed but not perfect of course. I know there is still inflammation due to some recent blood tests/MRE, but I feel much better than months ago.
11-14-2015, 11:34 PM   #10
laura98
 
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Welcome laura 98.The Promethius test is the standard,to my knoweldge,for anti-bodies for Remicade. It is a simple blood test that gets sent off to California labs. It detects anti-bodies. Infusions every eight weeks are the standard.Loading doses are more frequent,as you experienced.I have had infusions for sixteen months.Just had lucky 13,recently...or the next one? Hmmm.
If I start up on Remicade again, my doctor will be doing this test every time to check the levels in my body to make sure I'm getting enough. How have you been on Remicade?
11-15-2015, 12:56 AM   #11
Clash
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It can happen. My son was tested for antibodies before he had to come off Remicade for surgery. He didn't have antibodies at that time. When he started back and reacted the test was done and it was really high.

His reaction was tightness in his chest, flushing, short of breath. Of course his nurses were on top of it and on the look out because they said when starting back the reaction generally happens on the second dose.

Edit to add:

If you're having trough level tests when you start back then I'm sure they'll be testing for antibodies. You can speak to your GI about it if you have concerns. My son's reaction wasn't severe, it just something to be aware of.

Last edited by Clash; 11-15-2015 at 01:21 AM.
11-15-2015, 07:29 AM   #12
my little penguin
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Agree with above
DS reacted twice to remicade ( he didn't stop the meds and had no antibodies per the test)
Both reactions were mild but ended up having to stop remicade and switch to humira .

He is also on partial enteral nutrition with the crohns exclusive diet.
He drinks 8 Peptamen jr a day with a piece of fruit for lunch and a small dinner.
Per the diet he is allowed up to 50% of his calories from food but it is a very specific list of foods .
No sugar ( just 2 tsp), no processed foods , fillers, additives, emulsifiers, dairy,canned goods sweets(cake cookies etc)

http://www.crohnsforum.com/showthread.php?t=71686

Good luck
DS has been on the diet since April
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11-15-2015, 10:23 AM   #13
laura98
 
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Agree with above
DS reacted twice to remicade ( he didn't stop the meds and had no antibodies per the test)
Both reactions were mild but ended up having to stop remicade and switch to humira .

He is also on partial enteral nutrition with the crohns exclusive diet.
He drinks 8 Peptamen jr a day with a piece of fruit for lunch and a small dinner.
Per the diet he is allowed up to 50% of his calories from food but it is a very specific list of foods .
No sugar ( just 2 tsp), no processed foods , fillers, additives, emulsifiers, dairy,canned goods sweets(cake cookies etc)

http://www.crohnsforum.com/showthread.php?t=71686

Good luck
DS has been on the diet since April
How's he with Humira? Is it also an infusion?

And do they know how long he will have to be on the partial enteral nutrition diet for?

Thanks!
11-15-2015, 11:33 AM   #14
my little penguin
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Humira is an injection
He has been on it for 2.5 years without issues
The partial en with crohns exclusive diet is for life as far as i know
But DS possible has other issues in the Gi tract ( gastroparesis)
He gets Ill when he tries to eat large amounts of food ( even allowed foods only ) can't even get to the 50% allowed
Either way he is growing and gaining weight and doing what he needs to do
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