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02-17-2015, 09:44 PM   #61
Pilgrim
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Yes, that roller coaster of hope is exhausting.

I second what Maya said. Loading doses seemed really exhausting and stressful. But I was surprised at how easy it was when we got to maintenance.

Hope you end up wondering why you were worried!
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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
02-17-2015, 09:46 PM   #62
Maya142
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Soon it'll be as easy as Remicade! Easier, in some ways! Hope it's his miracle 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
02-17-2015, 10:05 PM   #63
Clash
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He is working every evening after school except Tuesday and never works on Sunday. He is doing mtx injections on Tuesdays so we chose Sunday for Humira.

I be tried to inform him he may be tired but you know teens!
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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
02-17-2015, 10:11 PM   #64
my little penguin
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Good luck
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DS - -Crohn's -Stelara -mtx-IVIG
02-17-2015, 10:40 PM   #65
kimmidwife
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Glad he will finally get it on Sunday. Hopefully all goes smoothly and it will be his miracle. I know exactly what you mean about the hope being exhausting!
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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.
02-18-2015, 06:05 AM   #66
DustyKat
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Sending much luck and fingers crossed that all goes well on Sunday!

Onwards and Upwards!

Dusty. xxx
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Mum of 2 kids with Crohn's.
02-18-2015, 08:30 AM   #67
crohnsinct
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Oh man Clash! Who could blame you for feeling this way. Look at all you have been through and every time all the hope and waiting etc.

Praying this is it for him!
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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
02-18-2015, 12:17 PM   #68
Tesscorm
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Yes, can certainly understand. It is wearing when there's a constant worry/question... even when it's not a 'major' worry, just constantly having that nagging worry wears you down. I hope this is the last time you have to go through the 'new med' for a long, long time!

And that you're soon enjoying a cool glass of wine, on a sunny, warm patio (the thing of my dreams!!) without a single worry!!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
02-22-2015, 04:31 AM   #69
Chester31
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Hope all goes well today.
02-22-2015, 01:26 PM   #70
Clash
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Well that was kinda horrible to watch!

The nurse did the first shot, I could tell it was painful. He gave him self the other three.

He did well but I'm glad that is over with, now to two Sunday after next then on to one every other Sunday.
02-22-2015, 02:32 PM   #71
DustyKat
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*Hugs* Clash.

Well done C for pushing through the pain and doing the shots yourself!

I hope Humira works wonderfully well for your lad Clash and roll on every other Sunday!

Dusty. xxx
02-22-2015, 02:57 PM   #72
Maya142
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Way to go C! Hopefully, it'll get easier. The first loading dose was by far the hardest for M (she said after that, just injecting one shot was not so bad).
02-22-2015, 03:03 PM   #73
Clash
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He didn't have much to say about it and I didn't push.

The nurse said she covered the northern half of our state as the pediatric humira training nurse. When we explained the drive we were making for remicade she was surprised. She said she had several pediatric remicade home health nurses in her office and wondered why we weren't offered at home infusions.
02-22-2015, 04:06 PM   #74
Jmrogers4
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Glad it's over today. I was thinking of you guys this morning. Hope it works wonders
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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
02-22-2015, 07:32 PM   #75
lenny
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I really hope it works!
02-23-2015, 09:40 AM   #76
Tesscorm
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Glad it went relatively well but hugs to you... heartbreaking to see your child go through something tough/painful. Am hoping this works for him and that future shots get easier.

Did you ever ask about having lidocaine added? Just to lessen the pain?

Anyway, just glad it's over too!
02-23-2015, 09:45 AM   #77
Sascot
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Hope it works well!
02-23-2015, 09:54 AM   #78
Clash
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Tesscorm he's not having the syringe shot he is using the injector pen so can't add lidocaine. He waffles on which type but in the end chose the injector pen.

Not sure how Humira affected him since the night before he stayed over at friends and they stayed up real late. So not sure if the shots or the night before activities had him sleeping yesterday.
02-23-2015, 10:31 AM   #79
kimmidwife
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Glad to hear it went well yesterday!
They don't allow home infusions of remicade from what we were told due to the high incidence of reactions to the meds. That is probably why they weren't offered.
Will be praying that it works great for him!
02-23-2015, 11:00 AM   #80
Clash
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Kimmidwife, this home health nurse was pediatric, her co-workers too. She just does the humira training but the remicade home health nurses do the infusions for pediatric patients in their home. She said she found that most are located in the larger city. She also mentioned that they carry more equipment to appts like epi pens and such. So it is an option for pediatric patients as that is all this home healthcare agency dealt with.
02-23-2015, 01:01 PM   #81
Pilgrim
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Glad he got through it Clash. I don't know if it happens to everyone, but H has an immediate space-out after the injection. Like she got hit on the head with a hammer. We ran into her doctor and the tears were wet on her face still - he asked, "Did you just get your shot" She said, "No". It's like a little mini amnesia. One time she couldn't remember her last name right after. If that happens to your son at all it may be why he wasn't into talking right after the injections.

LOL, nothing stops the social life of a teen. I'm thinking sleeping all day could be pretty normal (we have teen boys, too).

I hope he feels progressively better and that it works for a good long while.
02-23-2015, 03:13 PM   #82
Maya142
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M wouldn't talk either but that's her reaction to pain - she goes inwards.

If we were to do Humira again, I would definitely explore the syringe and lidocaine option even though M is 18. Her rheumatologist always calls Humira "an absolutely brutal shot." The health center in most colleges will do the shots for them if they don't want to.

Hope Humira starts working its magic SOON!
02-23-2015, 03:55 PM   #83
Clash
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The thing I do like about the pens is that they are ready to go. I wonder with preparing the syringe if it might lead to less compliance away at college.

It's almost like anything that takes time or process is way more than C is willing to do on a regular basis. I think the preparation of formula/pump/refill formula bag/time consumption is why C won't go back to ng feeds. Ha if he only knew the monotonous, time consuming tasks, he will face once he out on his own in everyday life! But, honestly, its like his mentality is I don't want to slow down to do that.
02-23-2015, 04:09 PM   #84
Tesscorm
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S is EXACTLY the same way. Very frustrating sometimes! When C goes away to school, don't even waste your breath explaining about separating the colours from the whites... S just throws everything in the same load! And, then, rolls his eyes at me and says 'my laundry always turns out fine'...

---(from my other thread) I convinced S to skip that afternoon class before his scope but, I think what convinced him was that, if he attended the class, he'd have to start the prep on his own... I think it was right about then that he said, 'uh, yeah, I'll just come home and do the prep' (translation - 'I'll come home so you can just hand me the glass and tell me what, when to drink'

Oh well, I guess it's fair... I always remind myself he (all our kids) have to deal with lots of stuff others don't so... maybe they deserve the odd free card.
02-23-2015, 06:14 PM   #85
crohnsinct
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S is EXACTLY the same way. Very frustrating sometimes! When C goes away to school, don't even waste your breath explaining about separating the colours from the whites... S just throws everything in the same load! And, then, rolls his eyes at me and says 'my laundry always turns out fine'...
I have heard about people who separate their laundry...I thought they were a myth! So there is something to that rule? I honestly only do it if I am using bleach.

I am the exact same way as C and S...too many steps and I will bail!
02-23-2015, 07:02 PM   #86
Tesscorm
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Must keep things quick and easy for hubby!
02-23-2015, 07:05 PM   #87
Maya142
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Clash - a nurse at the health center would be able to mix the lidocaine and Humira. We actually explored that for my older daughter but she ultimately decided that she didn't want to see the needle and would rather deal with the pain.

At her college, if Humira is being shipped to the health center, the nurses there actually HAVE to administer the shot (I think it's a liability thing?). It took a LOT of arguing plus several notes from her rheumatologist saying that she could do it by herself. Since it has to be kept cold, we didn't want it to go to the student mailroom because who knows how long it would take them to process it.

My daughter definitely does not separate her whites and colors -- not just a boy thing !
02-24-2015, 07:19 AM   #88
Pilgrim
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Does Lidocaine have any known side effects?
02-24-2015, 07:26 AM   #89
my little penguin
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Not that I know DS has used lidocaine for over a year with humira
The difference in pain from injections was dramatic
No issues to date
02-24-2015, 08:37 AM   #90
SupportiveMom
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Onto Humira... Sorry he built up the antibodies. Good plan to have someone with him in case he had an allergic reaction. D did her Humira booster at the hospital clinic which gave us peace of mind given her reactions. I am glad the pens are working out. We went with the syringe, but after using the pens with the Simponi, I get how much easier they are if our kid is administering the drug. Crossing fingers things work well on Humira!
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Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
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