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Crohn's Disease Forum » Parents of Kids with IBD » Humira doing its job


11-15-2011, 12:15 PM   #1
Brian'sMom
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Humira doing its job

Just wanted to post for parents who might be contimplating and maybe fretting about Humira. We just did another round of labs for my son...its been 10 months on Humira. His SED rate is at 12, CRP at -.05 and White blood count 8.2 (so his immune system is strong even so) and liver tests all good too. (A reminder, in Feb. his SED rate was 70, CRP 3.6.)

I just hate that he has to endure that shot every other week, but when we got these results yesterday, my son jumped up and fist pumped.
"YEEESSSS!" he exclaimed. I think that says it all.
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
11-15-2011, 12:19 PM   #2
Crohn's Mom
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Yeah !! I am so happy to hear this news for you and your son!!
I hope it continues for a very, very long time !!

~T~
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~T~
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and Austin (18)
DX: Crohn's 7/2013
11-15-2011, 12:38 PM   #3
beth
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That's fantastic news!
Long may it continue working without any problems.
11-15-2011, 12:49 PM   #4
izzi'smom
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I am SOOOO happy for you guys...hopes for continuing progress!!
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Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
11-15-2011, 01:16 PM   #5
DustyKat
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What a positive and inspiring update Kathy! Thank you so much for posting!......



May it last a lifetime hun...


Dusty. xxx
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11-15-2011, 05:07 PM   #6
Brian'sMom
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I was a 'number one skeptic' and 'pessimist' and 'worrywart' etc etc etc, not too long ago...so I wanted to spread the word for any other moms and dads out there that are on the fence about this medication. I'm not cured of the worrying, but I'll have to admit that Humira is helping my child.
I thank you all for your well wishes, I too hope it continues for a long while. My son thanks God for the 'scientists' in his prayers at night.
11-15-2011, 06:26 PM   #7
DustyKat
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Ooooooo, love the new avatar too!

Please tell me it hasn't been up for ages and I have been missing it!!!

Dusty.
11-15-2011, 07:13 PM   #8
Tesscorm
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Thanks so much for posting! Love to hear good news! Hope it continues forever!
11-15-2011, 09:18 PM   #9
Dexky
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I'll second you on that Kathy!!
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11-16-2011, 05:14 PM   #10
Brian'sMom
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Dusty, Just put up the new avatar! Brian's back to his old self in soccer. He scored 3 to 5 goals each game. Was on an undefeated team! It gave him some respect from all his friends that are twice and three times his size! He's fast and also has some skill...but never stops running, (and burning those calories-downside!)

Had his dr visit today...He's still one ounce from 60 lbs. (We have never broken past the 59 mark!!) I've read all these stories on here where the kids are gaining weight by leaps and bounds...we get 3 pounds...then lose 2! He's soooo active! When he gets into the 60's I'm throwing a party and you're all invited

Last edited by Brian'sMom; 11-16-2011 at 06:19 PM. Reason: added pic
11-16-2011, 07:55 PM   #11
dannysmom
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Great news! Thanks for sharing.
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11-16-2011, 10:56 PM   #12
DustyKat
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Phew!

Wow! Way to go Brian!...

I hear ya about the weight but while ever he has that much energy things are going fab! Matt's a soccer player too and he is built like a greyhound, I think you have to be to have the stamina to play the game!

Now all am waiting for is my invitation!

Dusty,
12-22-2011, 04:48 PM   #13
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That is great news! My son started this back in May and has been doing great too. Does he take 20mg or 40mg every 2 weeks? My son weighs 63 lbs and takes 40mg.
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Previous meds: Prednisone, Remicade
Current meds: Started Methotrexate 15 mg 4/27/11 then went down to 7.5 mg 9/21/11; insurance company rejected Cimzia; Humira approved 5/20 - first 2 injections 5/25
12-22-2011, 11:23 PM   #14
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Great to hear it is working well! Hope it continues all good things for everyone in the new year!
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
12-22-2011, 11:46 PM   #15
DustyKat
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Thanks for the update scrapper! This is so great to hear!

May it keep on keeping on...

Dusty. xxx
12-23-2011, 07:24 PM   #16
Brian'sMom
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Scrapper,
He takes the 40 mg. The pen doesn't come in the 20mg...our gi doctor said they have had a few doing the 20mg syringe, but the kiddos don't really get into remission unless they go to the 40 mg. (She explained it to me like this: Once you've graduated to the biologics your crohn's isn't 'mild' anymore). I'm just glad its working!! Glad to hear you are having the same good results!
12-24-2011, 10:27 AM   #17
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Thanks Brian'sMom! I like the explanation that your GI doctor gave you. I thought my kid was the only one taking 40mg. I asked our GI if we could give the dosage every 3 wks instead of 2 since he is doing so well, but he said taking it every 2 wks is like taking Remicade every 8 wks. A lot of his med leaked out last week, and I can definitely tell by one of his poops that he had yesterday. The doc knows what he is talking about!
12-26-2011, 06:37 PM   #18
Brian'sMom
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Scrapper, We sound similiar! I asked the same question of our GI doc...to spread out to every 3 weeks! At least we are asking questions!! It helps when you realize the doc "knows what he/she's is talking about"!
12-29-2011, 07:50 PM   #19
Zoodles
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I'm going to add to this. It took me almost 6 months to decide to go with Humira. At this point, Brendan weighed 43 # and hadn't grown for almost two years. A little over year and a half later he has grown 6" and gained 60#. We're still not at normal blood work but pretty darn close. But, our life is a close to normal as it's going to get thanks to Humira.

Yeah the black box warnings are hard to get used to ( but please read the statistics and compare to other life probabilities). Semiweekly shots get easier to give as time goes by and eventually they learn to accept that the shot is what is making the difference.

I have to watch coming to the forum. It's a great source of knowledge and experience. But I noticed that I was starting to obsess over what was going to go wrong next. After seeing how sick my son was I'm afraid it is going to happen again and my protective bubble is pretty darn thin. I hope that 2012 is a great year for all of us!
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12-29-2011, 08:23 PM   #20
Brian'sMom
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Linda, I totally agree with you! Also, your advise to try the EMLA cream was a great tip. Thank you! It has made the injections much easier for Brian. That's when this forum comes in handy
12-29-2011, 08:26 PM   #21
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That numbing cream makes a world of difference! When we accidentally left it on for an hour my son barely felt the injection!
12-30-2011, 06:10 AM   #22
DustyKat
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Hey Zoodles,

Good to see you! Thanks so much for dropping by. I hear you hun and know what you mean...

It's so great to hear that Brendan is doing so well. I hope it lasts a lifetime! Good luck!

Thinking of you,
Dusty. xxx
12-30-2011, 06:12 AM   #23
DustyKat
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Hey Kathy,

Love the new avatar! I must say, Brian is such a handsome young man!

Dusty. xxx
01-01-2012, 11:59 PM   #24
Brian'sMom
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Dusty,
Loving your new avatar of Matt! And ditto to you on your handsome young man!!
01-02-2012, 12:09 AM   #25
Tesscorm
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Dusty and Kathy - love both your avatars! What good looking boys!!!
01-02-2012, 10:40 AM   #26
lancek
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Yes, both very good looking boys!!
01-03-2012, 01:13 AM   #27
LilyRose
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Thank you for your post. It was lovely to read your good news and it certainly helped me to read it. I am so pleased for your and Brian. And i loved that he thanks scientists in his prayer - what a gorgous boy! And I think the scientits have brought us more treatment options and they keep going with more reseach all the time.

Take care,
LilyRose
01-03-2012, 07:50 AM   #28
lancek
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Yes, hoping and praying for more breakthroughs in research this year for all of those suffering from CD. Did you all know that you can contribute directly to the research through CCFA? I've done that!
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