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02-01-2015, 06:15 PM   #31
Farmwife
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Hugs, I hope Humira works for him.
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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
02-01-2015, 06:56 PM   #32
Clash
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Okay, kimmidwife, if I drive more than two hours and they don't do anything if he has a reaction, they'll be seeing me have a reaction as well! LOL!
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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
02-01-2015, 09:52 PM   #33
CarolinAlaska
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I'm going to call the GP but highly doubt they are equipped. I do remember they didn't allow C to have his allergy shots there when were considering them and the travel to the allergist was quite far, but not sure how that relates.
Probably relates a lot. 😞
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
02-10-2015, 09:28 PM   #34
Clash
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The humira should be here soon. The pharmacy should have the px tomorrow and I already have the my humira card info(the card is in the mail)

Quick question: C has woken twice in the last week and the left side of his bottom lip is swollen. He can feel that is is swollen, their are no cuts or sores in the area. He hasn't bumped it or anything. He says he can feel when the swelling goes down but even after he says that it still looks puffy to me.

Is this a thing the GI should be aware of, I mean how could it relate to something he needs to know? I'm not sure what the GP would say other than virus or uti(his answer for everything) what other doc would this fall under?
02-10-2015, 09:56 PM   #35
my little penguin
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Allergy or hereditary angiodema ???
Any extra swelling automatic call to allergist ...
Let us know what the doc says
Also call Gi as an FYI
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02-10-2015, 10:11 PM   #36
Clash
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MLP he hasn't had swelling with his allergies before. He says he has woke up with it 2 mornings out of the last week. Next time it happens I'm taking a pic and scheduling an appt.

Oh my, he just came in and said he had googled his symptoms and it may be sleep apnea according to Dr. Google. I've created a monster.
02-10-2015, 10:31 PM   #37
my little penguin
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Even if he hasn't had swelling before
Call his allergist
Same thing you would do for any Gi symptoms
Swelling of lips can go bad without warning
Good luck
02-10-2015, 10:33 PM   #38
my little penguin
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Other health conditions
Other illnesses that can cause swollen lips include:

Cold sores: the herpes simplex virus can trigger cold sores and blisters that can become red, swollen and sore. The blisters may break open, leak a clear fluid and then scab over after a few days. They usually heal after several days to 2 weeks.
Cheilitis: a rare inflammatory disorder of the lower lip.
Cheilitis granulomatosa: a rare inflammatory disorder that affects young adults.
Melkersson-Rosenthal syndrome: a rare neurological disorder.
Lip cancer associated with excess exposure to sunlight.
Inflammatory bowel disease (Crohn’s disease, ulcerative colitis) can cause swelling of the lips.
From
http://www.m.webmd.boots.com/a-to-z-...en-lips?page=3

So definitely allergy and Gi
02-10-2015, 10:33 PM   #39
Maya142
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don't trust Dr Google! Hope the Humira goes well.
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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
02-10-2015, 10:52 PM   #40
Pilgrim
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MLP he hasn't had swelling with his allergies before. He says he has woke up with it 2 mornings out of the last week. Next time it happens I'm taking a pic and scheduling an appt.

Oh my, he just came in and said he had googled his symptoms and it may be sleep apnea according to Dr. Google. I've created a monster.
It's probably the cup he's using! He needs more cups.
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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
02-10-2015, 11:03 PM   #41
Clash
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Bwahahaha!
02-11-2015, 01:19 PM   #42
Tesscorm
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Just catching up on this

Good luck with the shot! I hope all goes smoothly!

I would have all on hand for an allergy reaction - benedryl, epi-pen, anything else... It certainly won't hurt to have it on hand.

With humira, is it likely that if a reaction is to happen, it will be during the loading doses?
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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
02-11-2015, 01:21 PM   #43
Sascot
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Good luck for the Humira!
02-11-2015, 01:24 PM   #44
Pilgrim
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Just catching up on this

Good luck with the shot! I hope all goes smoothly!

I would have all on hand for an allergy reaction - benedryl, epi-pen, anything else... It certainly won't hurt to have it on hand.

With humira, is it likely that if a reaction is to happen, it will be during the loading doses?
What I was told by the specialty pharmacy was that you would usually see a reaction within 24-48 hours after the first or even the second set of loading doses. She told me that if you can get through those - you are usually in the clear. I assume this means "in the clear" for the shorter term possible effects.
02-11-2015, 01:25 PM   #45
crohnsinct
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Heck! I say call the fire department and National Guard to! Can't be too careful...safety first

Tell that lip to fall into step! No glitches days before first shot!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
02-12-2015, 07:51 PM   #46
Clash
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Ok, I'm fairly close to complete explosion...

The GI office uses a certain specialty pharmacy. I explained that it wouldn't be the one my insurance uses since ours is just one. Still everything got sent to their pharmacy.

So, GI pharmacy calls two days ago and says we had to transfer everything to the specialty pharmacy your insurance uses...um duh. They told me to call that pharmacy.
For two days they didn't have the transfer on file. It came in today. The rep was freaking awesome and was determined to get this expedited but it turns out the px sent from GI office didn't come with refills and the specialty pharmacy needs to have at least one refill to get the meds out to us on time after loading dose.

So, it has been 4 weeks since we first discovered C was moving to Humira, 1 week delay due to my own idiocy of forgetting to send C to get his tb test, another week delay because the GI never got the results from GP for tb. And overall delay because they went through the wrong pharmacy.

Maybe the cups, plates and bowls were to throw at the wall to release stress?!

C didn't not have a swollen this morning. He was to start the benedryl when he got off work. I left it out for him and texted him and left a not on the counter(I was asleep when he got in) yet he didn't take it.

Yeah it may take more than throwing dinnerware to work out the stress.
02-13-2015, 01:16 PM   #47
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For two days they didn't have the transfer on file. It came in today. The rep was freaking awesome and was determined to get this expedited but it turns out the px sent from GI office didn't come with refills and the specialty pharmacy needs to have at least one refill to get the meds out to us on time after loading dose.
Typically, for a patient starting Humira/Cimizia, the doctor has to write two prescriptions. One is for the loading dose, as it needs to be dispensed all at once. The second is for the refills at the maintenance dose. I'm pretty sure the doctor can't write both of these on one script. Sounds like they only received the first prescription.
02-13-2015, 01:35 PM   #48
Tesscorm
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Ugghh, Clash!!! That is so frustrating! You'd think these people deal with these issues all the time and would know how to best resolve them! Really hope it gets worked out soon!

And C forgetting the benedryl... So nice to know S is not the only one who forgets any and everything (and then conveniently forgets that he forgot and happily gets on with life)!!! (But, glad he didn't have a swollen lip!)

Perhaps a steady supply of plates, bowls and cups is not a bad idea!

Hugs... hope you can get all resolved by today or Tuesday!
02-13-2015, 03:18 PM   #49
Clash
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Hopefully, it will be straightened out by Monday. I just wish it would've all gone sooner because I know in C's head it is just this ongoing hassle that adds to the teen mentality of whatev, w or w/o I'm great. Teenage invincibility...ahhh the joy.
02-14-2015, 04:23 AM   #50
DustyKat
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They say life wasn’t meant to be easy but sheesh it shouldn’t be so fecking hard either!

I hope it will be all straightened out by Monday too Clash! And all goes wonderfully well with the Humira. Sending tons of luck your way…

Dusty. xxx
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02-14-2015, 04:43 AM   #51
Chester31
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So frustrating! Really hope it gets sorted soon. I will be following your updates as J is moving from 6mp (only managed 3 weeks!) to Humira in the next couple of weeks.
02-16-2015, 04:15 PM   #52
kimmidwife
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Is he getting the humira today?
Good luck!
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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.
02-16-2015, 04:43 PM   #53
Clash
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No, today was the day I was thinking they would call with shipment date but no phone call.
02-16-2015, 06:26 PM   #54
kimmidwife
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Oh we had a hard time with the specialty pharmacy as well.
02-16-2015, 06:35 PM   #55
Clash
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The pharmacy called and said the starter kit was sent to the GI office per GI. This is odd because I asked the GI nurse about doing it there due to C's reaction(although it was probably due to antibodies) and the GI said there shouldn't be an issue, now this. I have a call into GI now.
02-17-2015, 08:20 PM   #56
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I hope it was settled today!
02-17-2015, 08:28 PM   #57
Clash
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Yep, it's settled. Starter kit hadn't been sent to GI, GI nurse straightened it out and kit is on its way. Nurse is coming Sunday to do the first loading doses.
02-17-2015, 08:30 PM   #58
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Great to hear! Bet you can't wait for Sunday and actually see it done and over!

Lots of wishes that all goes well!
02-17-2015, 08:33 PM   #59
Maya142
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Fingers crossed that it will all go smoothly

Just a head's up, M was very tired the day after the loading dose (4 shots for her too). I think she missed school. She wasn't tired at all once we got to the maintenance dose, I think it was just the four shots at the same time.
02-17-2015, 09:13 PM   #60
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Its weird, I'm ready and not so ready. I know once things are established I'll be fine but just the thought of here we go again, "let this be the one" blah blah blah wears me down.
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