07-11-2016, 12:23 PM   #1
my little penguin
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Join Date: Apr 2012

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Humira every 5 days

So ds arthritis is worse
Issues in his fingers on both hands and hips
Rheumo wants to increase humira to every 5 days

Anyone else on humira every 5 days ???
DS - -Crohn's -Stelara -mtx
07-11-2016, 01:08 PM   #2
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Pilgrim's Avatar
Join Date: Jul 2014
Location: Ontario

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Adult dose every 5 days? I think he's the guinea pig! I sure hope it helps MLP.
07-11-2016, 01:36 PM   #3
my little penguin
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Yes adult dose every 5 days
He weighs well over the minimum kiddie dose weight ( 102 lbs /46.3 kg)
He was only ever on the kiddie dose for 2 months 4.5 years ago .
07-11-2016, 03:43 PM   #4
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Maya142's Avatar
We have done every 6 days (the adult dose). No side effects except a cranky kid because she didn't love the shots!
07-11-2016, 04:24 PM   #5
my little penguin
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On the shots Rheumo said rumor is next summer the new humira formula will be out for patients so less pain
07-11-2016, 05:28 PM   #6
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Next summer?! It's already out in Europe. My older daughter was so excited - she was hoping sooner.

She did say that switching to syringes from the pens made a HUGE difference (thank you MLP and Clash!).
07-12-2016, 06:46 AM   #7
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Join Date: Apr 2012
Location: Michigan

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Ummm.........oh think the closest Grace got was every 7 days and a lower dose but she was 5.

I hope it works.
Has damage already started to happen in any of his joints?
I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
07-17-2016, 04:04 PM   #8
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Optimistic's Avatar
Join Date: Oct 2014

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Mlp, did it work?

And yes, humira formula is available outside US. I know someone who tried to get it for themselves while vacationing in Europe but there was not enough time to get approvals and schedules. Maybe there is a market for medical tourism to get it? I'm happy to chaperone the first group of kids that go over. 😜
07-18-2016, 12:14 PM   #9
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kimmidwife's Avatar
Fingers crossed that this helps him!!!

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.
07-18-2016, 09:44 PM   #10
my little penguin
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Seeing baby step improvement
But figure it will be a while since he stopped pred and nothing to hit the inflammation with
Just have to wait on humira to beat it down which takes a lot longer than steriods
Sweets spots are back as well since he stopped pred and colchicine

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