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Crohn's Disease Forum » Parents of Kids with IBD » Calling all Remicade experts advise needed please.


04-10-2017, 09:01 PM   #1
Jane and Nick
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Calling all Remicade experts advise needed please.

Good morning,
It's been a while, since I posted. I have been updating my self regularly on the forum, we have been quite well recently and didn't want to awake the rath of the crohns gods by posting. Unfortunately they woke up any way.
We are on our 4th day of a 5 day hospital stay 😒 Nick developed 5 fissures that were not healing or improving, so after a flexi sigmoidoscopy and MRI they discovered his disease has moved to his rectum and he had a very small abscess just above his coxsycs. The decision was made to have a surgeon try and drain it and then once infection free we would start Remicade. He is now on two different antibiotics 3 doses of each via his IV daily. They may repeat the MRI before beginning Remicadee which they plan on starting on the 22nd.
I have always been prepared to fire the big guns and use biologics but now I am getting cold feet, although I know it's the right thing to do.
Nick has grown taller but has not gained weight, he is in agony after bowel movements and has to sit on a hot pack all evening, he's constantly exhausted, so I know we have to try and fix this.
We are still living in Malaysia and our gastro only has one other adult patient who uses Remicadee, is there anything I should be asking them to do differently for Nick compared to the other adult patient ?
This forum is and always has been a life saver for me and my sanity.

Last edited by Jane and Nick; 04-10-2017 at 11:40 PM.
04-10-2017, 09:44 PM   #2
Maya142
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Hmmmm...let me tag some parents who have (or had) kids on Remicade:
my little penguin
Mehita
Tesscorm
pdx
Farmwife
Jmrogers4
Clash

I would make sure they are doing the dose by weight - for example, if they choose 5 mg/kg, make sure they change the dose as he gains weight and grows.

Will he also be on something like Methotrexate or Imuran to prevent antibodies? Most GIs like to have kids on combination therapy, so that they can prevent antibodies if possible and prolong the amount of time the kiddo is on Remicade.

I would also make sure the infusion is done at a hospital, with trained nurses watching for a reaction (I'm sure they would do it in a hospital or infusion center anyway - just wouldn't do a home infusion if it were my kiddo - I know in some areas home infusions are offered).

Poor little guy, he sounds miserable .

Remember that while Remicade kicks in immediately for some kids, for others, it can take a while. It took 2 infusions before my daughter felt even a little better and 4 infusions before she actually felt much better. Some kids take as long as 6 months.

The good part about Remicade is that you have some flexibility with the dosage and the frequency. The loading doses will be at 0,2 and 6 weeks. After that, maintainance doses are 4-8 weeks apart, depending on what he needs.

My girls quite liked the infusions. It was definitely harder on me the first time, than on them! They loved watching TV, missing school and napping. We went to a children's hospital, so the nurses made a big fuss of them. I'd just make sure you take some sort of entertainment for him. Since it won't be a children's hospital (right?), they probably will not have video games, or books and toys for kids. I'd take an ipad or book or something like that.

After the IV is in, the infusion is a breeze. Just long and boring. Expect to be there 3-4 hours.


Good luck!!
__________________
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
04-10-2017, 09:52 PM   #3
Jane and Nick
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Thank you Maya,
I will check all of those things. We are going to have the infusion in the endoscopy ward and I will take him some entertainment, good idea ! He is already taking Imuran 100mg daily with Salofalk. I will update his signature as it's very old.
Thank you again for your advice.
Jane
04-11-2017, 10:17 AM   #4
Farmwife
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Bless his heart.
Maya already have the run down on what I would ask for.
Grace had a minor anaphylaxis episode (if you can call anaphylaxis minor? ) on her last infusion.
She's had two years of Remicade with no issue or side effects.
I would just ask what there protocol is for emergency would be.

Remicade has done wonders for Grace.
I'm hoping it was a fluke last time because I'd hate to lose the drug.
__________________
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
04-11-2017, 10:28 AM   #5
GI Jane
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I had to take Benadryl while taking Remicade so expect very tired reactions all day. It was a miracle drug for me for awhile it even took care of my joint pain. On Envivio now which is working on inflammation in intestines but not on joints. A new movie for a DVD player like the new Harry Potter one terrible beasts it was so cute and not terrible. I love cartoons so Monsters vs Aliens if you don't have it already is awesome.
04-11-2017, 10:35 AM   #6
pdx
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So sorry to hear about your son's current condition, and I hope that Remicade works really well for him. Remicade has worked well for my daughter, but it did take about 6 months until she really started responding to it, and we had to increase the dose several times. What really helped her while we were waiting was a course of EEN; that's something else you might consider in the short term. Good luck with everything.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
04-11-2017, 11:30 AM   #7
Jane and Nick
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THANK YOU for all the very informative replies, it is priceless to be able to hear real advice based on experience.
I will ask about the protocol, they are suggesting he has his infusion on the day case endoscopy ward, and although we know it rather well, it isn't in my mind set up to deal with anything out of the realm of scopes and routine procedures.
My husband has unfortunately been fighting stage four cancer for almost five years and we visit oncology bi weekly, part of me is wondering if that would be the best place to have the infusion, we know the nurses and they are set up for all and every scenario. I bet that there will be an issue between departments about payment. I will ask, although I have a hard time rocking the boat with doctors but I may have to just man up and be Nicks advocate.
Thank you once again.
Jane
04-11-2017, 11:50 AM   #8
pdx
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So sorry to hear about your husband. Wishing for good health for all of your family.
04-11-2017, 10:09 PM   #9
Jmrogers4
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Sorry just saw the tag, Jack has been on remicade for a little over 3 years now with now issues, he gets his infusions done at an infusion center where it is mostly cancer patients so just make sure they follow the doctors orders and you know what they are as well. We had a few hiccups when we had to switch from GI office to infusion center and there was confusion about when and how to give solumedrol and speed of infusion. It all worked out fine and luckily I had a copy of orders from GI office.
Jack is weighed each time before infusion and Remicade is ordered after he arrives but I'm not sure how it would work there, I know others have remicade pre-ordered and it is based on whatever their weight was at the previous appointment and if it works as well for your son as mine that could be a big difference in dosing.
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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
04-14-2017, 10:09 AM   #10
Mehita
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We're going on 3 1/2 years of Remicade now. Crazy! Like others have suggested, be sure the dose is adjusted by weight as he grows. I guess I would lean towards the infusion center that you spoke of. The nurses their will be experts at pokes and understanding the IV directions. Beyond that, Remi isn't hard to manage really and my son says going in every 6-8 weeks is better than tons of pills daily. Good luck!!
__________________
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
04-18-2017, 04:15 AM   #11
Jane and Nick
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Thank you for all the replies. We are having a meeting with his gastro doctor tomorrow, Wednesday with a view to starting Remicadee on Saturday. What are everyone's thoughts on Benadryl ? I have only been able to find the one a day non drowsy tablets available here in Kuala Lumpur. I will ask that question tomorrow along with the weight and adjustable dosing option. Both terrified about potential reactions and excited that Nick may get some relief from all his symptoms. Does anyone else still question if the symptoms are bad enough for this type of intervention ? I think I'm going slightly mad.
My husbands oncologist suggested that Nick and Colin had the treatment on the same day as they have a room with two beds, he thought it would be a fabulous idea. He was being very kind but I just thought how awful, but now I am trying to look at it glass half full, we are lucky to have the options and the treatments that could potentially make a positive difference.
04-18-2017, 09:50 AM   #12
Maya142
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Honestly, not all infusion centers give Benadryl now. It used to be pretty standard but then they figured out it really doesn't do much to prevent a reaction.

So I wouldn't worry too much about getting the tablets.

Sending hugs - the first infusion is tough. Once you see him start to get better, you'll stop questioning whether it is right.
04-18-2017, 10:04 AM   #13
Lisa
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Good luck with everything. You could see if they can give Benadryl IV prior to the infusion - that is what I get, I actually bounce back quicker from that than if I were to take pills....plus I don't have to worry about timing as I am usually at work before my infusion and depending on what is going on I may not have a chance to take it.
__________________

30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
04-18-2017, 10:50 AM   #14
my little penguin
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When Ds was startedon remicade
I felt physically ill that I was giving my child this Dd
And wondered like you washe really sick enough
Then after three infusions I saw the med work
I never realized how sick he really was
Until I saw him better
It was like a new kid
Anytime he has had to stop biologics
I am always grateful to have himstart back up

Good luck
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04-18-2017, 11:31 AM   #15
Maya142
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I was a disaster when we gave the first shot (we started with Humira, not Remicade) - I think I was up all night worrying about it. In fact, I had many sleepless nights worrying about whether we were doing the right thing.

But within a couple months, I was SO SO SO glad Humira existed.

Hang in there and good luck!!
04-18-2017, 01:05 PM   #16
aypues
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umm anything requiring a hospital stay is 100% severe enough to warrant going on a biologic IMO. I started Remicade (in combination with Cellcept) in September 2016 and I haven't had one side effect. Now my disease is under control and I can lead a somewhat normal life again. Definitely do it. It's time.

p.s., I premedicate with Tylenol and Zyrtec. I opted out of Benadryl since didn't want to be too sleepy. I still end up sleepy the rest of the day but not as much. Been thinking to move my infusions later in the day for this reason but then I'd hit major traffic coming home. I also opted out of Solumedrol as a premed. My bones were not the best after years of uncontrolled disease and Entocort use, so my Endocrinologist advised not to do it unless really necessary. I haven't had any infusion reaction since going off it, and still no antibodies to Remicade.
04-19-2017, 05:20 PM   #17
Mehita
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My son is given a Benedryl tablet at the infusion center (along with Tylenol and Solumedrol) and is usually pretty tired after. He's always been the type of person who gets sleepy from it, but on the other hand my other son and myself get hyped up on Benedryl, so you never know!

As for questioning the symptoms... I regret not starting sooner. DS had an abscess and fistula combo and that is what prompted the start of Remicade for him. I've told this story before, and I know this is not typical, but one hour into his infusion he was feeling spectacular. Two weeks later his labs were normal and two weeks after that his GI declared clinical remission (I should add he was on abx this whole time to help clear the infected abscess so that may have helped things along as well). He's been in remission every since.

I think it's hard as parents to see how sick our children are sometimes. We see them every day so changes aren't always apparent us. When DS was at his worst, I caught a friend of mine looking at him with a very sad face. She saw what I wasn't seeing. I went back and looked at some old photos of him and was shocked. Then to see the huge improvement after starting Remicade and all the growth and color and energy... it was kind of crazy. If you're able to take a step back and see the bigger picture, Remicade might not seem so bad, or at least worth a try, compared to how Nick is living now... in pain, exhausted, and sitting on hot packs.

Best of luck to you!! I hope it works wonders for him. Please let us know how it goes. Hugs to you all.
04-25-2017, 11:32 PM   #18
Jane and Nick
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Everything went SO well for our first infusion 😀 We ended up having to do it in the endoscopy day case unit, not ideal, however the nurses were very compertant and kind, I think they enjoyed the novelty of looking after Nick. He didn't have any reactions and announced half way through that he felt "different" I immediately was on high alert, different how ? Short of breath, itchy, sick, ??? "No mum, different, different in a good way"! I was sure it was more a product of wishful thinking but he has continued to feel better each day, he has more energy, more color and he went to the bathroom last night without pain for the first time in months and months. We are all incredibly excited and grateful that he is feeling better. We have our second dose on the 6th May.
Thank you all for the encouragement and support, it made everything so much easier to deal with. I felt informed and confident having your support, I was still a nervous wreck and will I'm sure be the same next time, but the first step has been taken and it all seems to be going well.
Should a blood test be done before each infusion ?
04-26-2017, 08:32 AM   #19
Jmrogers4
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Yeah! Glad he is already feeling better that is the way it was with Jack although not everyone has immediate relief. About 1/2 way through our first infusion he looked at me and said he was starving, went out for lunch after and he just devoured more food than I had seen him eat in years and it hasn't stopped. Hope this brings many years of relief.
We do have a blood draw before each infusion but I know his doctor keeps talking about dropping that to every other one at least since he has been so stable.
04-26-2017, 08:48 AM   #20
pdx
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Glad to hear that everything went well! We have blood tests with every infusion; a basic set every time and then a more in depth "nutrition panel" every 6 months.
04-26-2017, 04:04 PM   #21
Maya142
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We had basic blood work at each infusion and more extensive blood work done two or three times a year. M's GI did a CBC, CRP, ESR and a metabolic panel at each infusion.

SO glad he is feeling better!! What wonderful news!!
04-28-2017, 11:20 PM   #22
Mehita
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DS has labs drawn before every infusion as well. Hep panel, CBC, ESR and CRP. Quite honestly, DS is doing so well on Remicade that I feel like even skipping labs would rock the boat!
05-03-2017, 08:45 AM   #23
Jane and Nick
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Well it seems I may of counted my chickens before they hatched. After a week of no symptoms we are back to frequent toilet episodes around 6 per night, although he is in far less pain and hardly any blood, so that is still a positive. We have the second infusion on Saturday and are hoping that we will see some improvement again. It was tantalizing to have a taste of how well he felt even if it was for only a week. Fingers crossed.
05-03-2017, 08:48 AM   #24
Jmrogers4
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chickens haven't hatched yet We messed with dosages and timing that whole first year until we found what worked.
05-03-2017, 10:47 AM   #25
Maya142
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Hang in there!!

For what it's worth, we had NO improvement at all till after the second infusion. And then it took 3-4 infusions before my kiddo felt good.

So you're already ahead . It might take some playing with the dose and frequency once you get to maintenance dosing. I know it's very hard to be patient, but the fact that he is responding already is VERY good news .
05-03-2017, 11:35 AM   #26
my little penguin
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No improvement here for 7-8 weeks
So well after the third infusion
Good luck
05-03-2017, 04:50 PM   #27
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I had to wait a whole year to see big improvement but we were also dealing with her arthritis.
Still it was worth the wait!
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