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05-11-2017, 02:45 PM   #1
Lizette
 
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Levels are back

WE did michaels levels on Monday after 4weeks 2days of his Remicade. Results show 0 levels of Remicade in his body and he developed antibodies.. Any thoughts? Dr wants to scoop and see what's next. We have appt with his GI next Thursday.
Lizette
05-11-2017, 03:18 PM   #2
malorymug
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Remind us of his dose and is he on MTX too?

My kiddos levels were 0 with antibodies in January 2016. The doc was able to increase dose and frequency and a retest several months later showed levels without antibodies.

Also when there is active inflammation the body runs through remicade faster than when in remission so he may need a bump up for a bit and then he can go back down.

Don't give up hope for Remicade just yet.

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Mom to: 15 year old boy
Crohn's in stomach, small intestine, large intestine, and perianal disease
Diagnosed April 2014, at age 13

Currently taking:
Remicade 10mg/kg every 6 wks
Methotrexate 7.5 mg/wk
Cipro
Augmentin
Miralax

previous meds:
6mp 50mg
Flagyl
Cipro
Prednisone 30 mg
05-11-2017, 04:25 PM   #3
Maya142
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He may just need a higher dose/frequency. Some kids metabolize it very quickly. Adding MTX may also help increase his levels. You can go up to 10 mg/kg of Remicade every 4 weeks. Some doctors will go even higher - my kiddo was on 20 mg/kg every 4 weeks for her arthritis.

If his antibody level is really high, then they might want to stop Remicade and put him on something else - Humira, Stelara or Entyvio usually. You would also want to add MTX so he does not develop antibodies to the new drug.
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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
05-11-2017, 06:56 PM   #4
Lizette
 
Join Date: Mar 2016
Location: Michigan

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Remind us of his dose and is he on MTX too?

My kiddos levels were 0 with antibodies in January 2016. The doc was able to increase dose and frequency and a retest several months later showed levels without antibodies.

Also when there is active inflammation the body runs through remicade faster than when in remission so he may need a bump up for a bit and then he can go back down.

Don't give up hope for Remicade just yet.
Hi, he goes every 8 weeks 10mg/kg. His labs were excellent , everything normal even CRP were very normal. I don't think will continue with Remicade because he gets fever every 10-20 days after plus after 2nd Remicade he startedshaking his head to the front. And just last week his jaw is Shaking. Fissures and abscesses in ano still coming. So he might change to a diff. Will see.
Thank you.
I don't think they can go more in dosis he in only 45 lb. for a 18 yr old. And to move it frequently we already saw that at week 5 no levels.. the dr call today so we are seeing him next Thursday.
Thank yoy
05-11-2017, 07:05 PM   #5
my little penguin
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He only weighs 45 lbs ??
Not 145lbs right?
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DS - -Crohn's -Stelara -mtx-IVIG
05-11-2017, 07:17 PM   #6
Maya142
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Or 45 kg??

How tall is he?
05-12-2017, 05:07 AM   #7
Lizette
 
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I'm sorry is 45 kilos... 96 pounds... he is 5.4 . Sorry I was thinking in Spanish lol.
05-12-2017, 05:27 AM   #8
Lizette
 
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Location: Michigan

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He may just need a higher dose/frequency. Some kids metabolize it very quickly. Adding MTX may also help increase his levels. You can go up to 10 mg/kg of Remicade every 4 weeks. Some doctors will go even higher - my kiddo was on 20 mg/kg every 4 weeks for her arthritis.

If his antibody level is really high, then they might want to stop Remicade and put him on something else - Humira, Stelara or Entyvio usually. You would also want to add MTX so he does not develop antibodies to the new drug.
The dr faxed the results yesterday yo my husbands office so he will get it home today, so I will tell you what it says. Sorry he 96 lb. 45 kilos and 5'4. When we ask the dr at the big inning of treatment if he was adding MtX he said no, he did not wanted to suppress his imune system more. maybe because his Crohns is mild compare to others. So I don't think tat will be an option. When he called my husband yesterday I think he mentioned he had a lot of antibodies. But I could be wrong.
My question is? If in this time that he has had Remicade and was not working properly, was my son healing on his own? Gaining more weight because we add neocate jr? I knew since infusion #3 it was not working the way it should have, since he was having the same issues. I remember talking to my cousin who is a GI asking her how long it would take Remicade to do effect and she told me in adults if by 4infusions they're is not improvement they switch medications. I reaserched on Remicade and said the same. Plus I ask my Gi to do antibodies test and every time he had appointment he will say no, he does not need it, he does not show syntoms of not working because he was gaining weight. But I think since infusion 1 he wasn't having allergic reaction. With the fevers.. so I did research and it did say late actions fever 10-20 days after Remicade.. so that's why I decided to to the test.?
Well I guess he s going to do colonoscopy and we go from there.? I have another appt and Henry ford hospital with another GI adult since Michael is turning 18 the last The of month. Just to anoter opinion specially now that we have his levels back..
I will keep all of you posted
Thank you for reading me..
Lizette
Michael dx in 2006 age 6 now age 17 almost 18
Past medications 6mp, asacol, Flagyl, cipro, vitamin D, iron infisuions,
Current. Remicade, Pentasa , vitamin D, iron, probiotics.
05-12-2017, 05:27 AM   #9
Lizette
 
Join Date: Mar 2016
Location: Michigan

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He may just need a higher dose/frequency. Some kids metabolize it very quickly. Adding MTX may also help increase his levels. You can go up to 10 mg/kg of Remicade every 4 weeks. Some doctors will go even higher - my kiddo was on 20 mg/kg every 4 weeks for her arthritis.

If his antibody level is really high, then they might want to stop Remicade and put him on something else - Humira, Stelara or Entyvio usually. You would also want to add MTX so he does not develop antibodies to the new drug.
The dr faxed the results yesterday yo my husbands office so he will get it home today, so I will tell you what it says. Sorry he 96 lb. 45 kilos and 5'4. When we ask the dr at the big inning of treatment if he was adding MtX he said no, he did not wanted to suppress his imune system more. maybe because his Crohns is mild compare to others. So I don't think tat will be an option. When he called my husband yesterday I think he mentioned he had a lot of antibodies. But I could be wrong.
My question is? If in this time that he has had Remicade and was not working properly, was my son healing on his own? Gaining more weight because we add neocate jr? I knew since infusion #3 it was not working the way it should have, since he was having the same issues. I remember talking to my cousin who is a GI asking her how long it would take Remicade to do effect and she told me in adults if by 4infusions they're is not improvement they switch medications. I reaserched on Remicade and said the same. Plus I ask my Gi to do antibodies test and every time he had appointment he will say no, he does not need it, he does not show syntoms of not working because he was gaining weight. But I think since infusion 1 he wasn't having allergic reaction. With the fevers.. so I did research and it did say late actions fever 10-20 days after Remicade.. so that's why I decided to to the test.?
Well I guess he s going to do colonoscopy and we go from there.? I have another appt and Henry ford hospital with another GI adult since Michael is turning 18 the last The of month. Just to anoter opinion specially now that we have his levels back..
I will keep all of you posted
Thank you for reading me..
Lizette
Michael dx in 2006 age 6 now age 17 almost 18
Past medications 6mp, asacol, Flagyl, cipro, vitamin D, iron infisuions,
Current. Remicade, Pentasa , vitamin D, iron, probiotics.
05-12-2017, 12:46 PM   #10
Maya142
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I would suggest a second opinion. A small dose of MTX will not suppress his immune system much and it will prevent antibodies. For a child who has already built up antibodies to one drug, it is standard.

I think it is hard to know how much Remicade is doing without scopes. If he is gaining weight and his labs are better, I think it is definitely doing something. That said, I am sure the Neocate has helped with the weight gain.

The dose is done by weight, so you could still increase the frequency. It doesn't matter that he is only 45 kg because it is based on weight - it would still be 10 mg/kg, but he could have the infusions every 4 weeks (since he has 0 Remicade in his body at 4 weeks).

It is safe and it is done quite often. The fevers are more likely disease activity - he is probably just not getting enough Remicade and it's wearing off early.

If he has fistulas and abscesses, I would not call his Crohn's mild. It also sounds like he has trouble with weight and growth, which automatically makes his Crohn's moderate to severe.

How much Neocate is he getting? Is he seeing a nutritionist?

It may be that he needs a different medication, but I think you need scopes before you can decide that and it may very well be that he just needs more Remicade. I would not give up on Remicade yet.
05-12-2017, 03:20 PM   #11
Lizette
 
Join Date: Mar 2016
Location: Michigan

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I would suggest a second opinion. A small dose of MTX will not suppress his immune system much and it will prevent antibodies. For a child who has already built up antibodies to one drug, it is standard.

I think it is hard to know how much Remicade is doing without scopes. If he is gaining weight and his labs are better, I think it is definitely doing something. That said, I am sure the Neocate has helped with the weight gain.

The dose is done by weight, so you could still increase the frequency. It doesn't matter that he is only 45 kg because it is based on weight - it would still be 10 mg/kg, but he could have the infusions every 4 weeks (since he has 0 Remicade in his body at 4 weeks).

It is safe and it is done quite often. The fevers are more likely disease activity - he is probably just not getting enough Remicade and it's wearing off early.

If he has fistulas and abscesses, I would not call his Crohn's mild. It also sounds like he has trouble with weight and growth, which automatically makes his Crohn's moderate to severe.

How much Neocate is he getting? Is he seeing a nutritionist?

It may be that he needs a different medication, but I think you need scopes before you can decide that and it may very well be that he just needs more Remicade. I would not give up on Remicade yet.
he takes 16oz a day, the nutritionist send it to him. He has only one superficial fistula. my kids have always beenunder de 50 percentile of the curve. They are small me and my husband are small. His weight went down because of Cdiff. The fevers were due to Remicade because even with Cdiff he never got fever before, so I don't think is related to his crohns. The antibodies are higher that 200. So we will wait for colonoscopy and see what's going there. Thanks for your I
Input.
Lizette
05-12-2017, 03:31 PM   #12
Maya142
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If his antibody level is that high, then it sounds like he's going to need another biologic.

A 17 year old boy who is 5'4 and 96 lbs is under the 1st percentile and very underweight.

I have a small kid too, who became very underweight because of Crohn's and Gastroparesis. She became so malnourished that she developed Refeeding syndrome, when we put her on formula (via tube). Refeeding Syndrome was first discovered in concentration camp victims during the Holocaust, so you can imagine how malnourished she was.

Her electrolytes were all over the place and she developed heart problems - an arrhythmia, which could have been fatal. She was hospitalized and monitored very carefully.

I say this not to scare but because I honestly did not know how bad being underweight was. It finally got through to us when the doctors started telling us they were seriously worried about her organs shutting down.

Kids need calories to grow and develop and kids with Crohn's often need more because they do not absorb them properly.

I wish that we had started tube feeding much sooner. She has now gained about 30 lbs and has much more energy and just feels SO much better.
05-12-2017, 04:09 PM   #13
malorymug
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My kiddo had regular fevers too when his Remicade was every 8 weeks. We figured out that his fevers were because of his abscess and fistulas. Once the abscess was drained the fevers went away.

07-13-2017, 08:30 AM   #14
Lizette
 
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Hello, Michael had a colonoscopy last week, the rectum had inflammation, the biopsies show inflammation in ileum colitis with no activity, cecum colitis mild activity, ascending good, trasversal, good descending and sigmoid colitis mild and rectum mild to severe, his Gi pediatric said to consider inmuran or humira . He developed Cdiff again he finished his anthibiotics treatment one week before colonoscopy when he had negative Results. We saw a new Adult Gi that specialize in IBD she knows absolutely michaels condition she said his Crohns is in small and large. But she gave us 2 solutions. Remicade he can not ame because levels were above 200 humors and cimiza are next but more likely he will failed those so it would be e ti yo or stellar or put a stoma for 4 years and let the colon rest and reconnect later.( this was michaels option) he does not want to take those medications and the dry said is fine. His lab came very good they did a allergy test came negative to food but the allergist dr said to avoid milk and derivates. He is doing hyperbaric oxygen hebis in number 28 as of today has help a lot, fissures and abscess closing, his stools are more formed he goes maybe 3 times a day with form stool, and 4 with only gasses he has not had the urgencies like before, and because he was in the oxígeno when he got cliff , it was very mild it help to kill the bacteria, we did not spect him with Cdiff when they did the test. So we are not doing nothing now until he finishes 30 more sessions of oxygen, so the dr wants to see him middle of aug. when I said stigma she said they will connect the ileum to it and put the bag the colon will stay to let it rest specially the rectum.
My brother has the bag for the past 10 years so Michael knows what it it he has him as an example and he sees his uncle happy and enjoying life
Thank you
Lizette ( Michael 18 ) he was 17 last time a post
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