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Crohn's Disease Forum » Parents of Kids with IBD » Another kid switching to Remicade


01-07-2015, 02:45 PM   #1
malorymug
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Another kid switching to Remicade

My boy is switching from 6mp to remicade, with mixed emotions. We went into the appointment knowing that his health wasn't great and that we didn't want this to be the new normal (lost weight, fatigued with lots of joint pain). Reading so many success stories about remicade, I really wanted it for my son. But ugh, it was so hard to hear the GI say remicade.

Actually I'm fairly certain nothing the doctor said today would have made me happy. I guess I'm glad he agrees with me that the 6mp isn't strong enough. I guess I would have been angry if he sent us home and said, "yup, this is the best we can hope for".

I hope we aren't given up too early (7 months). I'm lamenting losing the 1 pill a day regime. But still super hopeful to get a healthy kid.

It is sad when the doctor asked a 14 year old how he is feeling and he says "good", and the truth is he hadn't slept in two nights, takes tylenol for joint pain 3-4 times a day, and rarely eat 3 meals in a row. This is not "good"! My kid has adapted to feeling crappy and has no idea how other kids feel.

Thanks for letting me ramble. Thanks for posting the good stuff about remicade, it made hearing the news much better.
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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
01-07-2015, 02:54 PM   #2
crohnsinct
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I hope it is magic for him! Works great for my older daughter. My younger one was just dx'd Friday and a piece of me wants to hear Remicade because we have had such a good run with it.

One every 4 to 8 weeks is great. The rest of the time you forget you have Crohns.. well except for supplements and such. I especially like no chance at forgetting a dose because the infusion nurses are on it!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
01-07-2015, 03:02 PM   #3
Worried mama
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Yup, just got off the phone with the hospital to set up our first appointment. 2 weeks til we go for the first infusion. There is a part of me that is excited and hopeful that it will work wonders and the other part that is just terrified. My son always says he feels fine. But I do wonder at times what 'fine' really means to him.
01-07-2015, 03:24 PM   #4
malorymug
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Worried mama, did you have any troubles with insurance? My GI office says they are seeing denials all over the place. Insurance is wanting everyone to try Humira first. Is this political/marketing or just their protocol? I'm not sure, but I'm not emotionally ready for Humira.

We aren't scheduling until we hear from insurance.

Best of luck with your son's infusion. Looking forward to hearing good stories.
01-07-2015, 03:32 PM   #5
DanceMom
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We've done daily pills, weekly injections, and now infusions every 4 weeks. My daughter much prefers the infusions. She has the option of doing weekly subQ at home but just isn't interested. She doesn't mind going to the hospital for treatment (and getting spoiled) and prefers to keep "medical things" out of our home as much as possible.

Change is always scary at first, but hopefully this will be that magic medicine that your son needs to thrive!
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
01-07-2015, 03:46 PM   #6
Jenn
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Yep, we've all felt the same way, it's so hard, but can be so worth it. And better sooner than later, we waited until a new fistula and abscess formed. Hope it works great for your son!
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Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (20mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections
01-07-2015, 04:00 PM   #7
Worried mama
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I believe the GI called first to verify insurance, but maybe I should double check on that. I didn't think it would be an issue, but you never know.
01-07-2015, 04:34 PM   #8
Maya142
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My daughters both loved Remicade, they thought it was much easier (and much less painful) than Humira.

The one pill a day does seem convenient at first, but when Remicade does its magic, the inconvenience of the infusions seems minor in comparison to having your happy, healthy kid back. Some kids feel better immediately, but others take longer-- it did take my daughter 3 infusions or so before we saw a real improvement.

Good luck!!
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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
01-07-2015, 11:48 PM   #9
Jmrogers4
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So understand that feeling. I hope it works wonders for him. My son says he didn't realize what he was feeling wasn't normal before remicade as that was normal for him
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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
01-08-2015, 07:23 AM   #10
Pilgrim
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What I also found amazing as a parent was what I had gotten used to.

Your kid gets used to pain, exhaustion, and so on... and we get used to underlying anxiety about each meal, each bowel movement. And greeting our child with, "How are you feeling honey?" or "how was your poop?"

We didn't do Remicade, but opted for Humira. Honestly, I couldn't believe the difference and still can't and it's only been a few weeks. It started to work immediately for her. I'm so pleased with the results, that I sometimes forget to worry about side effects. Now I can actually think of my child starting school next year without dread.

So, I hope Remicade does the same thing for you and your son. Allows some anxiety and pain to go away and some other aspects of life to fill the void.
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Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
01-08-2015, 10:20 AM   #11
Farmwife
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I use to worry about these new drugs and then she started them.
Now I worry about them wearing off to soon.
Next I'll worry about them stop working all together.
Yup, I worry a lot. Lol
Remicade has been a huge blessing.
Grace likes going to the infusion center and getting spoiled. She's a princess so it comes naturally.
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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
01-09-2015, 05:14 AM   #12
DustyKat
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Sending much luck and well wishes that Remicade weaves its magic for your lad!

Good luck!

Dusty.
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Mum of 2 kids with Crohn's.
01-09-2015, 09:40 AM   #13
Mehita
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We did six months on Aza before switching to Remicade, but DS had gotten progressively worse on Aza so it was an obvious next step for him. He loves Remicade and it's worked very well - life changing, even. Growth started almost immediately and hasn't atopped. I hope it works as well for your son!
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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
01-09-2015, 10:23 AM   #14
malorymug
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You all give me so much hope!! Thank you for all your kind words and success stories. And, Pilgrim, your post made me cry. Yes, I guess we parents have adapted too. LOVE the understanding on this board!
01-09-2015, 10:58 AM   #15
araceli
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I hope remicade does wonders for your son. It has been the ONE for my daughter.
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Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
01-09-2015, 08:24 PM   #16
myboy12
 
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We have had great results thus far with Remicade. Taking the step is hard, but the results are worth it! Good luck!
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Son diagnosed at age 12, December 2014

Current meds: Remicade every 8 weeks (May 2014)
Past meds: Prednisone, 6MP and 3000 mg Pentasa
01-13-2015, 06:07 PM   #17
malorymug
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Argh! Xray and tb quanferron blood test came back indeterminate. Off to pulmonologist. Did we ready need another doc in the mix?
01-13-2015, 06:31 PM   #18
crohnsinct
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Oh no! Sorry to hear about the delay but better safe than sorry eh?
01-13-2015, 06:37 PM   #19
Maya142
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My daughter's TB test (the skin test) came back indeterminate too, but her quanteferon and chest x-ray were negative. We were sent to two infectious disease doctors who couldn't figure out why the skin test had been positibe but said since the others were negative we could start her on Humira.

It was a very frustrating process. Hang in there! It really is better to be safe but of course you want him to feel better as soon as possible. Sending hugs.
01-13-2015, 06:54 PM   #20
my little penguin
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Paging Dusty
I know she had some weird tb results before
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01-13-2015, 07:13 PM   #21
malorymug
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I definitely want to be safe. It's just, ugh, you guys know.
01-14-2015, 05:46 AM   #22
DustyKat
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Matt had Quantiferon Gold done about 6 months ago and I read up on it a bit at that time.

IIRC an indeterminate result can be caused by things such as: improper collection, elevated CRP, a malfunctioning immune system including immune suppression.

As to me? My experience was a bit different to what you are going through. Well back in the day when I started nursing there was only the skin test to determine exposure, plus chest X-Ray, and we had to have a BCG immunisation done as there was a large infectious diseases unit at the hospital. So I had the mantoux skin test done and it was negative and I was then given the BCG. I had no reaction to it whatsoever, you are supposed to get something akin to smaller smallpox immunisation type lesion. So another mantoux was done, negative again so given another BCG that again resulted in no reaction. Another mantoux was done and still negative. They gave me a third and final BCG to which I had the teeniest reaction but a failure by anyone’s measure. They wouldn’t do another mantoux and rolled their eyes saying…You must be immune by now! Off you go!

Good luck hun and I hope the wait for solid answers isn’t too long!

Dusty. xxx
01-14-2015, 08:07 AM   #23
crohnsinct
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Well back in the day when I started nursing
Dusty. xxx
Oh man! Really?! Can I leave this one alone?
01-14-2015, 08:59 AM   #24
my little penguin
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So many comments so little time
Must not hijack thread ......
01-14-2015, 09:42 AM   #25
malorymug
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Thanks for the explanation Dusty. It makes me feel better about the quantiferon. I wonder why they perform that test on kids that have high CRP.

Still a little freaked out about "nodular density in the lower left lung" on the xray. I'm sure we will get that cleared up soon. And had the skin test done last night.

I'm all about the humor, hijack away MLP
01-14-2015, 09:45 AM   #26
Farmwife
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I knew you would want it hijacked.
01-15-2015, 08:48 PM   #27
DustyKat
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Go on then you lot! Do your best!

@malorymug. Unfortunately when biologics are being considered there is a very high likelihood you are flaring and hence a high CRP is also likely.

Pulmonary EIM’s, although on the rarer side, do exist. We have members pop up occasionally that have chest X-Ray findings of lung nodules that are result of EIM inflammation.

Dusty. xxx
01-19-2015, 06:36 PM   #28
malorymug
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I thought I'd post an update. I know a lot of us are just starting this journey and the unknown is so scary.

We had our first remicade infusion on Friday and all in all it went well.

We had the TB fire drill earlier in the week. Quantiferon blood test was indeterminate and xray showed dense nodules. So we ran around to get a last minute skin (PPD) test and a CT scan of the lung. Both showed no TB. So Friday morning we were clear to start the infusion.

It took three times to start the IV (he drank 18 ounces of water on the drive, even), but the IV specialty team was amazing.

They premedicated with tylenol, benedryl, solumedrol. He slept through a lot of it. When he wasn't sleeping he was eating and eating and eating.

We had singing cowboys come through and sing a few songs and gave all the kids cowboy hats. My boy slept through it, but it was a nice distraction for me.

It took a total of 7 hours (iv troubles took 1). And we bravely left and drove 3 hours north to go fly fishing for the long weekend. He has been great. Appetite and go going all weekend. I hadn't realized he would get steroids. We love steroids.
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