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07-29-2014, 09:23 AM   #1
DanceMom
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Ivig

The IVIG therapy was approved by our medical insurance company! Because we met our out-of-pocket max for the year already we won't have to pay anything for the infusions for the rest of this year. I'll worry about next year when that time comes. We may be on SCIG by then anyway. I emailed the nurse to let her know the medication should arrive at the hospital today, so hopefully she'll get back to me with appointment information soon. Both nervous and hopeful about this!!
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
07-29-2014, 03:27 PM   #2
DustyKat
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Brilliant news DanceMom!

Sending loads of luck that all goes wonderfully well with the infusions and you soon have an appointment.

Dusty. xxx
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Mum of 2 kids with Crohn's.
07-29-2014, 07:06 PM   #3
DanceMom
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We have an appointment for Tuesday morning! For now I feel relieved that things seem to be falling into place. Come Monday night I'll be a nervous wreck! lol
07-30-2014, 12:33 PM   #4
kimmidwife
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Good luck! Eager to hear how it goes!
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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.
08-02-2014, 06:47 AM   #5
Farmwife
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I'm glad things are moving forward. I hope it works well.

How has she been doing?
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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
08-02-2014, 09:56 PM   #6
DanceMom
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A has been doing fairly well lately. She has a cold and some EN lesions but nothing major. She seems to have another affected joint though - her big toe! She says the Icy Hot helps.

I'm getting nervous. Trying to focus on the positive!
08-02-2014, 10:25 PM   #7
Maya142
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Good luck!! I hope they're able to find a vein easily and everything goes smoothly!
Do you know if it's a long infusion? With Remicade, M takes a book and is able to watch TV there. She actually enjoys her infusions (after the IV is in) because it's a good chance to relax!
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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
08-02-2014, 10:31 PM   #8
kimmidwife
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Praying it all goes well and she feels fantastic after!
08-03-2014, 09:16 AM   #9
izzi'smom
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Your post caught my eye because my father in law gets IVIG for joint pain and he swears by it...lots of luck!!
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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.
08-04-2014, 06:44 AM   #10
Sascot
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Hope it goes well!
08-05-2014, 07:35 PM   #11
DanceMom
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A had her first infusion today! It started a little screwy because our not-so-fabulous nurse scheduled an appointment without actually entering it into the system (all she did was email me a time). The infusion director handled it but we got started an hour late. The center is nice and our nurse today was great.

They pre-medicated with Benadryl and Tylenol and had no trouble getting an IV started. They started the infusion extremely slow but she tolerated it well and they were able to increase the rate. They check vitals every 15 minutes. She developed a fever briefly, lasted maybe 30 minutes. The infusion lasted about 3 hours and then we were on our way.

She has a fever again this evening along with a slight headache. She keeps assuring me that she's "charged up for the month" and no need to worry, lol. We were told the headache/fever is common and expected (as long as it isn't severe). Going camping tomorrow and not worrying about a thing!
08-05-2014, 08:28 PM   #12
my little penguin
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Glad things went well
Sounds very similar to the remicade infusions DS used to get .
Good luck camping
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08-05-2014, 11:34 PM   #13
DanceMom
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Fever is gone and she's sound asleep. I pray every infusion is this easy!
08-07-2014, 09:26 AM   #14
DanceMom
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Both girls have stuffy noses and A also has a headache and fever. We are sitting in the camper pouting and drinking lots of water. Frustrating!
08-07-2014, 10:58 AM   #15
Sascot
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Glad the infusion went well. Sorry the camping isn't going great. Hope they feel better soon
08-10-2014, 07:56 PM   #16
DanceMom
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A's cold/fever are gone and all is well again! She's really doing great besides her joint pains. I mostly credit the Flagyl. That stuff works wonders for her.

We have most of her pre-infusion labs back. They look good other than IgG. Her WBC are still low, but higher than her previous draw. Could be because of the cold/fever that was brewing. Her IgG dropped from 602 in March to 503 (673-1734). I think IVIG was the right decision at this time and we'll see how things progress.
08-11-2014, 04:24 PM   #17
kimmidwife
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Awesome news! So very glad it went well. Continue to pray things go well for her!
08-19-2014, 08:54 AM   #18
Farmwife
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Can someone give some info on Ivig therapy.
Is this something that will help with auto-immune diseases?


Oh and Dancemom how is your girl doing?
08-19-2014, 09:55 AM   #19
kimmidwife
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IVIG is used for people with immunodeficiencies.
Here is a little article about it,
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1809480/
08-20-2014, 08:12 PM   #20
DanceMom
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Farmwife - Did your docs mention IVIG for Grace? I've read that it can sometimes be used in autoimmune conditions but I imagine it'd be a nightmare to get insurance approval on. IVIG is extremely expensive! Our Rheumo was very thorough with the immune testing so that process was lengthy, but the hypogammaglobulinemia and impaired antibody response couldn't really be argued and insurance approved the pre-auth pretty quickly once submitted.

A is doing fairly well. She says her back pops more now which she feels offers some relief. She is wrapping up her course of Flagyl (finishes tomorrow) and the diarrhea started coming back today....her luck. She does seem to have a white spot on her tonsil which she says hurts some but it doesn't seem to be increasing in size. Just watching it for now. Her energy is pretty good and she's happy. AND......her hair (that she lost while on Mtx) is growing back! It is fuzzy like a baby chick and sticks up all over her head, lol.
08-20-2014, 08:23 PM   #21
Farmwife
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No mention yet. I read a paper about a child that had multiple auto-immune issues and IVIg was used.

I'm glad A is doing better.
08-21-2014, 02:31 AM   #22
Sascot
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That's good she is feeling alright and happy. Hope things keep going in the right direction
08-22-2014, 07:05 PM   #23
DanceMom
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What would you call stool that comes out semi-formed but turns into a pile of flaky mush as soon as it hits the water? That's where we're at now. Saw a little blood as well. Pretty disappointed. Her energy levels have dropped as well. I can always tell by how she tumbles. At least we had a few weeks of peace.
08-22-2014, 07:22 PM   #24
Maya142
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Sorry to hear that, poor A! Did they tell you how long IVIG typically takes to kick in?
08-22-2014, 07:24 PM   #25
DanceMom
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I really don't know. It depends on how her body responds I suppose. Anxious to see where her levels are at next infusion.
08-23-2014, 03:15 AM   #26
Sascot
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Sorry to hear that. Can they bring forward the infusion, or is it really just a wait and see just now?
08-23-2014, 03:37 AM   #27
DanceMom
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It is scheduled for every 4 weeks now. Some people do need to go every 3 weeks. It is based on labs and symptoms from what I understand. I really can't imagine infusing every 3 weeks for the rest of her life. SubQ is an option but she is very against that right now.
08-23-2014, 06:31 AM   #28
my little penguin
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Big hugs... Sorry things have returned.
As far as iv vs sub q - if the meds are painfully ( not the needle stick).
Iv is easier on the kiddo since you as the caregiver do not have to inflict the pain .
Other thing to consider - it's better to think of things for this month or year vs a lifetime since things can and do change including the science /meds and kiddo .
We got caught up in the remicade for life bit when DS started that -
Turns out it was all of 8 months - wishing it was longer now .
Six years ago DS had life threatening food allergies to eight different nuts - we were told it was for life - the statistic for out growing one is 0.2%- there is no number for 8 different nuts. But today - no food allergies - yes he is an anomaly in many ways crohn's included but we have learned to try to focus in today since that is the only thing I have control over .

Hope the next infusion last longer - maybe just a tweak in dose is needed
08-24-2014, 08:49 PM   #29
DanceMom
Senior Member
Diarrhea and a low-grade fever. This is how it seems to go. Not sure if the Flagyl was the "magic pill" or the IVIG since she started the Flagyl about a week before her last infusion. Don't want to restart until we see what the next infusion does for her. A little over a week.....we can do this.....lol.

I'm wondering if we're dealing with recurring SIBO. After one set of scopes we were told A had SIBO but it hasn't been mentioned since then. I'll definitely ask the GI about this at her next appointment.
08-27-2014, 03:22 PM   #30
Malgrave
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In my son's case it kicked in in 4 weeks. Severe rectal bleeding stopped just like that (the evening before was bleeding a lot, next morning nothing!) . The good period lasted for three months, then the bleeding started again little by little. That was 1,5 years ago. Still bleeding very badly, stomach full if ulcers;-). The IVIG didn't take his Crohns away but he is still on it. His immunologist still believes that he has an immunedeficiency. Otherwise extremely healthy, never fever, running nose or stomach flu!
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*Son (9 years) with severe Crohn's diagnosed at the age of 26 months, currently UC or Crohn's colitis
*Current mediacation: IVIG, Humira, Azathpriorine, Eusaprim
(Tested but failed: Modulen IBD, Neocate advance, Budenofalk, Remicade, Azathpriorine, MTX, Jerusalem cocktail, cycklosporine, pentasa,...)
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