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07-13-2017, 09:51 AM   #1
my little penguin
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Ivig tips

So Ds is starting ivig
Any tips ?
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DS - -Crohn's -Stelara -mtx-IVIG
07-13-2017, 02:33 PM   #2
pdx
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No experience here--sorry--but I hope it goes well.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
07-13-2017, 02:56 PM   #3
Maya142
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I'll tag DanceMom.

Sending lots of 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
07-13-2017, 03:30 PM   #4
Farmwife
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Can I ask out of curiosity as to why?
Grace's nurse brought this up but I forgot why she thought it would help?.
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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
07-13-2017, 06:03 PM   #5
my little penguin
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Ivig For autoimmune disease (not just Crohns )
07-13-2017, 06:19 PM   #6
Maya142
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It can be used for a number of autoimmune diseases - from JIA to Lupus. We know a couple kids with JIA who have been on it and have done well.
07-14-2017, 12:47 PM   #7
DanceMom
Senior Member
A has done IVIG (Privigen) for years. Almost all docs pre-treat with Tylenol and Benadryl. Some also use Prednisone or Solu-Cortef (A gets this). Fluids are usually given before and after. Because it's made from human plasma there is an increased risk for reactions, particularly if the individual is IgA deficient.

Vitals are checked frequently and the rate is usually kept very slow to minimize risk. A's infusions usually take 5-6 hours. It is important to hydrate well 2 days before and after infusing. This is to prevent aseptic meningitis. The most common side effects are headache, diarrhea and fatigue. Side effects are best treated with fluids and Benadryl.

A felt better immediately after her first infusion. I hope it works well for your son as well. Many kids switch to SubQ after a few months but A is a creature of habit. Just know that there are options.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
07-14-2017, 01:10 PM   #8
my little penguin
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Thanks -Dancemom
His will be inpatient
We were told 8 hours for the infusion and plan on spending the night
No immunodeficiency-or no igA deficient
Just autoimmune disease
07-14-2017, 01:26 PM   #9
DanceMom
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Are you doing high dose IVIG? I've never heard of anyone being admitted overnight for standard dose IVIG.
07-14-2017, 01:57 PM   #10
my little penguin
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They didn't say
Ds is extremely complicated so that may be why
07-14-2017, 02:18 PM   #11
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Praying for your son that everything goes well!
07-14-2017, 02:21 PM   #12
DanceMom
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They didn't say
Ds is extremely complicated so that may be why
Most kids that receive IVIG are extremely complicated, lol. High dose IVIG likely has different protocols than standard dose IVIG so it will be important to know which he'll be receiving. You also have a choice in which medication to use, so that may be worth researching. Gammagard and Gamunex are very popular, but A has done well on Privigen. Just know that side effects are expected, especially the first few infusions.
07-15-2017, 11:22 AM   #13
my little penguin
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Looks like 2 g/kg since they do a much higher dose for autoimmune
I think I read primary immune deficiency is much lower dose (0.5 to 0.8 g/kg)
So that would explain the inpatient part
07-15-2017, 12:54 PM   #14
Farmwife
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I hope you don't mind me asking but it's he still on humira or did I miss why they had to take him off?
Will he being doing both?
07-15-2017, 01:52 PM   #15
my little penguin
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He will stay on his other meds
Humira
Kineret
Mtx

He will add ivig and wean pred
07-15-2017, 07:34 PM   #16
DanceMom
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Dancemom
Looks like 2 g/kg since they do a much higher dose for autoimmune
I think I read primary immune deficiency is much lower dose (0.5 to 0.8 g/kg)
So that would explain the inpatient part
Makes sense. How often will he receive it? I've known a few kids that did high dose weekly until remission, then discontinued.
07-15-2017, 09:36 PM   #17
my little penguin
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Every 4 weeks is the plan
Waiting for insurance
07-16-2017, 06:34 AM   #18
DanceMom
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We had no issue with insurance approval, but it seems most companies deny until the physician appeals. I've seen it take months to a year while hoops are jumped through.
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