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Crohn's Disease Forum » Parents of Kids with IBD » Undetectable Remicade levels after 4 weeks?


 
03-11-2015, 02:26 PM   #1
pdx
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Undetectable Remicade levels after 4 weeks?

Hi all,

My 12-year-old daughter E was diagnosed with Crohn's 3 months ago in Dec. 2014. In hindsight, she has had symptoms for at least 5 years, but the symptoms were always attributed to something else until she finally got very ill last fall.

I've been spending countless hours on this forum since then. Thanks so much to everyone for sharing their experiences here--it's honestly been a lifeline to me during the past few months.

Our GI recommended a top-down approach, so E started Remicade on Dec. 24 (no steroids). She continued to be very ill and lose weight, so we tried SCD for 3 weeks. That took away her abdominal symptoms, but she continued to lose weight--she hit 70 pounds at 5'1"--so we started 90% EN via NG-tube. That helped her gain some weight back, but 2 weeks ago she started feeling very sick again, with high fever, and she ended up back in the hospital.

A CAT scan showed leakage from her small intestine, which had led to an abdominal infection. She was treated with IV antibiotics, and she finally also started steroids--IV in the hospital, and Entocort now that she's home again. With the steroids, she's feeling better for the first time since diagnosis, and it's been so wonderful to see her smile again.

My husband and I have been concerned that the Remicade hasn't seemed to help at all yet (she finished induction 5 weeks ago), and so were were glad when her GI had her Remicade levels tested during her hospital stay last week. The test showed no detectable Remicade at 4 weeks from the last infusion. So E will be going back for her next infusion as soon as we can get into the infusion center, hopefully this week. She's also going to start oral MTX and folic acid this week.

Have any of you dealt with a similar situation? I'm so worried that the test results might mean that Remicade won't work for her. Should we push to increase the dose, along with increasing the frequency? So far, she's been at 5mg/kg. And how often should we ask for remicade levels to be checked? I know it's an expensive test, but it's so hard to know what's going on without testing.

I've seen that a lot of your kids have had to increase the dose or frequency of Remicade. How was the decision made to change the dosing, and how long did it take to figure out the optimal dosing?

Thanks so much for your advice.
03-11-2015, 02:51 PM   #2
Clash
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I'm sorry she has been struggling, I know it can be hard to watch as well.

My son had to have his dose adjusted, increased and had to add mtx.

I think initially we shortened the schedule then after an infusion or two with a fecal calprotectin result being high we upped the dose to 10mg/kg then next we added mtx. In the end my son's dose was high dose either 12mg/kg or 15mg/kg I can't remember now.

The remicade initially took all of C's symptoms away and then there were a couple blips that had us tweaking schedule and upping dose. In the end, C was asymptomatic but imaging/scopes showed that there was still stubborn inflammation and we opted for surgery.

He went back to remicade after surgery but developed antibodies so we've moved on to humira.

I wouldn't adjust both schedule and dose at once because you will have no way to know which is working. I hope things keep improving.
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Clash
Mom to
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
03-11-2015, 03:22 PM   #3
crohnsinct
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I am so sorry she has had a rough go of it.

5mg/kg is the adult dose and the kids tend to metabolize the drug a lot faster. My daughter was shortened to 4 weeks and 11 or 12 mg/kg for awhile. Then we settled at 5 weeks and 10 mg/kg for a long time. Our GI checked the levels frequently at the beginning to make sure the symptoms appearing was because she was burning through the drug too quickly and not that she just wasn't responding. After that he made the decisions based on symptoms ad checked levels about every 6 months to a year. You can't determine the drug is not working for her until you get her to a good trough level.

Also, at the beginning inflammation causes them to use up a lot more of the drug and as the inflammation settles you can tend to decrease dose and move out frequency. For example, my daughter is now that my daughter is in good solid remission she is at 7 weeks and 6 mg/kg.

It also isn't uncommon to add a treatment (Imuran, Mtx or EEN) to the Remicade to give it a little boost until it can handle things on it's own. But docs will typically do that once the levels have been firmly established.

It sounds like your doc has a good handle on things. hang in there. Things do get better. We didn't hit our stride until 6 months in.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
03-11-2015, 03:39 PM   #4
Maya142
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My daughter is on an experimental dose of Remicade - 20mg/kg every 4 weeks -- it's called high dose Remicade. It was prescribed for her arthritis though, not IBD.
If she's at 5mg/kg right now you have a lot of room to play with the dose. We went from 5mg/kg to 7.5mg/kg and then 10mg/kg every 4 weeks. That took care of the Crohn's but not the arthritis.

Adding MTX also really helped my daughter.
We only checked levels twice and it was mostly to check if she had antibodies (she didn't). However, if your insurance is cooperative and your doctor agrees it is necessary he/she may want to check more often given her history.

Hang in there! It takes a while to find the right dose/frequency.
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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
03-11-2015, 04:20 PM   #5
Momtotwo
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was she also tested for antibodies?
03-11-2015, 04:23 PM   #6
Farmwife
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I'm so sorry to hear about the struggles.
My Grace has been moved up to 4 weeks.
She also takes Mtx and sulfasalazine.
It takes awhile to even things out.
Hugs
__________________
I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
03-11-2015, 06:21 PM   #7
pdx
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Thanks so much to all of you--it's so helpful (and reassuring) to hear about all your experiences.

Momtotwo: I forgot to ask our GI whether she also tested for antibodies. I'm hoping that she did, but that she didn't mention it because it came back negative. I'll ask her when I see her next week.
03-11-2015, 06:35 PM   #8
my little penguin
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DS is also on Humira plus Mtx
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DS - -Crohn's -Stelara
03-11-2015, 11:01 PM   #9
FrozenGirl
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I had the same issue. After my induction did nothing we got my levels tested and almost nothing. I moved to 10mg/kg every 4 weeks and now I have more than adaquate levels.
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Dx: Ulcerative Colitis, Nov 2013
Currently on:
Mezavant 4.8g
Vitamin D 1000iu
Calcium
Tecta 40mg
Remicade: 600mg, every 4 weeks
Methotrexate: 15 mg (injection)
03-12-2015, 03:46 AM   #10
Sascot
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No experience with Remicade, just hoping you manage to get a schedule worked out that makes a difference. Good luck
03-21-2015, 08:50 AM   #11
pdx
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Thanks to everyone for your reassurances and advice. My daughter's GI doctor wants to up the remicade frequency to every 6 weeks for the next 2 infusions, and then she'll make a decision about whether we need to change dose and/or frequency. That seems reasonable to us, especially given that we've just added MTX, which seems to be helping a lot.

E is feeling so much better these past two weeks that she wants to apply to go to Camp Oasis in Washington. I would love it if she were well enough to go by this summer--I think it would help her so much to meet other kids who know what she's going through.
03-21-2015, 11:04 AM   #12
CarolinAlaska
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I'm so glad she is feeling better! That is wonderful! Thanks for the update.
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
03-21-2015, 04:02 PM   #13
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That's great she is feeling better, hope she can get to camp
03-21-2015, 04:58 PM   #14
Maya142
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Really hope she gets to camp!! Hope Remicade and MTX work like magic!
03-21-2015, 05:32 PM   #15
CarolinAlaska
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By the way, Jaedyn went to the Washington Camp Oasis twice, and loved it.
04-23-2015, 11:53 AM   #16
pdx
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I need some more advice. E has been off her NG-tube since Saturday, and it's been downhill since then. She's had lots of cramping, nausea, and diarrhea. We've been conservative with her diet, too--sticking with foods that she was tolerating during the weeks we were just doing night tube feeding. We tried doing some oral EN with Peptamen and Ensure, but she just can't make herself drink them. (She actually said she'd rather go back on the feeding tube than try to drink them.) She's down 2 pounds already, from the diarrhea.

She's scheduled for her next Remicade infusion tomorrow morning, and I'd really like to get her trough levels checked again, given that her levels were undetectable last time they were checked, and since it seems like the Remicade still hasn't kicked in. I also want to ask her doctor to up her Remicade dose to reflect her new higher weight, since she gained so much weight on the feeding tube.

So the problem is that I can't get hold of her GI doctor to ask about these two things. I e-mailed her Tuesday morning, and then left a couple of phone message with her advice nurse Weds. She's usually very good about getting back to us on the same day, so I think she's either sick or on vacation. She's a Kaiser doctor, so there's no group practice to call--she's the only Kaiser pediatric GI. Our infusions are done at the local children's hospital, not at Kaiser, so no one there can order the test for us.

I'm wondering if we should delay the infusion if we can't get hold of the doctor. If we go ahead with it, we'll have to wait 6 more weeks until we can check levels, and that's a long time to deal with all these symptoms. I'm afraid that we might not be able to get in again soon, though, if we delay--the infusion center is often completely booked up. Ugh--I hate uncertainty! I'm going to try to get hold her E's pediatrician today, to see if she can help, and I'll call the children's hospital too, to see if they have any advice.

What would you do?
04-23-2015, 11:57 AM   #17
Momtotwo
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i would ask the pediatrician. I would not delay the infusion since it sounds like she needs her REmicade. I would, however, call that nurse and insist that someone review her dose before tomorrow- does it need to be increased now?
The dr can increase the remicade frequency and/or dose based on symptoms. Levels are not necessary to increase that. We see a very reputable GI at what many consider the best kids' hospital for IBD and he does not use levels to adjust meds. ( I prefer levels. i like numbers. But I am not a pediatric GI at a great hospital, so I defer to him!!)
04-23-2015, 12:02 PM   #18
pdx
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Thanks, momtotwo--that makes a lot of sense, and makes me feel much better. I'm going to focus my efforts today on making sure that tomorrow's dose is correct.
04-23-2015, 12:13 PM   #19
Jmrogers4
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^^ Wouldn't delay and we have never had levels drawn but have increased based on symptom and weight gain. We needed insurance approval to go above the initial 5ml/kg to 7.5ml/kg and drop to 6 weeks then approval again to bump to 10ml/kg we did that every 6 weeks for a few infusions and have stuck with that dosage but bumped out to 8 weeks and he has been good we have been able to adjust dosage based on weight, the insurance approval is for 10ml/kg so we don't have to get insurance approval to bump up if he's gained. So 8 weeks ago he got 580ml based on 130 pounds last week he got 570 ml as he had dropped 5 pounds and they couldn't go any higher based on his weight without preapproval.
So we were able to go in for regular dosage at first and they sent for insurance approval for shortened time and increase in dosage so maybe you can go get what you can now and maybe get dosage increased and time shortened so go back in 4 weeks at higher dosage and see if you make 6 weeks
Hope it all gets sorted out.
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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
04-23-2015, 12:34 PM   #20
Momtotwo
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I just reread your post and noted the weight gain. This is how our infusion center works- they weigh my son right before Remicade. His Remicade orders are 10 mg/kg. However, the pharamacy does not adjust based on the weight that day. They do dosage based on orders, which are based on last weight at last appt. So...if my son doesn't see his GI for 4 months and gains 10 pounds (that would be a dream come true) he would still receive the dose for the weight 10 pounds lighter. If your center works the same way, your daughter will receive the wrong dose tomorrow if she has gained weight.
04-23-2015, 12:46 PM   #21
Maya142
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Our infusion center works the same way - they do dose based on the last weight. However, once I noticed M had dropped 7 lbs and was on too high a dose (10mg/kg for the higher weight) and informed the nurse. The nurse was able to contact her GI and get a new order put in. It meant we were at the infusion center longer but I didn't want her to get too much Remicade.

Can you ask your pediatrician to call your daughter's GI? Sometimes doctors can get through more easily to other doctors.

If your daughter is 12, she could learn to insert her own NG tube. It looks and seems way harder than it actually is - my daughter was dreading it and actually found that after 2 days she was quite good at it. She much preferred having the NG tube in only at night to having it in all day (of course, if your daughter doesn't mind having it in all day, then that's easier!). She also hated drinking Peptamen at first though she did get used to it (but still thought the NG tube was MUCH easier than drinking it).
04-23-2015, 12:57 PM   #22
pdx
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How frustrating, Momtotwo. I guess I can understand that if the infusion center is ordering the Remicade from a pharmacy somewhere else, but I'm pretty sure that at our center, the pharmacy doesn't mix up the IV bag until we arrive (because we've had to wait for the remicade several times when the pharmacy is busy). Even if it is premixed, it wouldn't be that hard for the pharmacy to mix up a little more and send it up during the infusion. In my daughter's case, if they use her last weight, she'll be getting just 4.4 mg/kg, instead of 5.

Our GI's advice nurse just called me back. She let me know that our doctor is out of the country until next week. We'll be seeing a nurse practitioner from the hospital tomorrow before the infusion, and our doctor's advice nurse sent over a note to the NP describing our concerns. So we'll see what happens tomorrow.
04-23-2015, 12:59 PM   #23
Momtotwo
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pdx-
we are at at a hospital infusion center. It is mixed after our arrival and after the vital signs are taken and it is STILL based on orders which are based on the last GI appt. the GI is in the same building. I know it doesn't make sense, but that is how it is done. My son was underdosed, in my opinion, because of this and rounding down on dose.
04-23-2015, 01:02 PM   #24
Momtotwo
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I share that to let other parents know because if I had not questioned it and calculated his dose based on kg weight, I would not have known! I assumed they weighed him, entered the weight and the pharmacy provided a bag based on that weight. My son was getting 100 mg when he should have been getting 115.
04-23-2015, 01:08 PM   #25
pdx
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Yes, Maya, we're thinking about having E try to put in the tube at night. Three months ago, I would have thought it would be impossible for her to do, but she was such a champ through the whole tube process these last few months, that I think she might be able to do it. We showed her some of the youtube videos done by kids, and she didn't think it looked too hard. (I'm so grateful to those kids who made the videos!)

While she didn't mind having the tube in all day around the house, she refused to go out of the house with it in, so I'd rather not go back to having it in all the time. (During the first week she had it in, a little kid made a big fuss about it at the doctor's office, and she was too embarrassed to go out after that.) It wasn't a big deal to stay in while she was so sick, but now that she's feeling better, I hate to have her stuck in the house!

We'll talk to her doctor about it next week, when she gets back into town.
04-23-2015, 01:13 PM   #26
pdx
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Momtotwo--that is so strange! It doesn't make sense to me at all! Why even make the dosing in mg/kg if you're going to ignore the kid's current weight?!
04-23-2015, 01:34 PM   #27
Jmrogers4
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We're lucky he has infusion done at his GI's office so they don't even call it down until after weigh-in so it's easily adjusted for weight.
04-23-2015, 02:25 PM   #28
Mehita
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I was just talking to out GI nurse about this last week. I didn't understand it fully, but there is some weird way they mix the Remicade. My son has been on the same dose for a year and a half and tomorrow at his next infusion if he weighs in at 110 lbs they will bump up his dose. If not, he'll get the same dose as usual. It has something to do with the vials that the Remicade comes in too... they can't be partially mixed???

I'll ask lots of questions tomorrow and report back.

On a side note, he gets Benedryl and Tylenol as pre-meds. Now that he's on Zyrtec for seasonal allergies, do y'all think he should skip his Zyrtec tomorrow? It'd be a double dose of antihistamines otherwise.
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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
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- Small bowel resection, Jan 2013
04-23-2015, 02:45 PM   #29
crohnsinct
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Same here. Dosed based on previous weight BUT if the nurses weigh the patient and they have gained a significant amount they will call the GI and ask if they want to bump up. It does have to do with the vials and not overdosing by using a whole additional vial.

Our doc also doses based on symptoms and again nurses ask prior to infusion how things are going. If the patient tells them things are going south, they will call GI for orders on how to proceed. Only after repeated problems will they order a levels test and that is because it isn't covered by most insurance companies and the high cost of the test.

I hope this infusion is the magical one that starts to help her feel better.
04-23-2015, 02:47 PM   #30
Jmrogers4
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I know with Jack they have tossed 20-30ml I guess it came as 600 and since he is only approved at the 10ml/kg it amounted to 570-580ml. I know his GI wished he could just give him the extra figuring he was going to gain weight in between the infusion.
I personally would skip the Zyrtec, how fast can you get a call back?
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