Immunoglobulin infusions for Crohn's (IVig)

[keithmoon]

I've been a member for a long time, but have not posted much. Have any of you ever been on Immunoglobulin infusions for Crohn's disease ? If so, do you know what the infusion dose whas/is and how often you got the infusion ?
Also, has it helped you at all. My doctor started me on the infusions back in April of this year, every four weeks. It has done nothing whatsoever. The nurse at the infusion center said I'm getting the smaller dose, and that the only other patient getting getting that small of a dose is a little old lady. I need to talk to the doc about possibly raising it, but I found out yesterday that he is off with an illness and have no idea when he'll be back. The only other med. I am taking is a fairly high dose of prednisone, for way too long, and I believe it's literally killing me. Now I feel like I've fallen through the cracks.......again. Any comments or advice would be appreciated.

 

[my little penguin]

My kiddo was on ivig in addition to Stelara/mtx .
He had three infusions that were every 4 weeks

He ended up with aspectic meningitis every single time from the infusions despite being given decadron and slow infusion rate (over 24 hours )

It did absolutely nothing for his crohns ,arthritis or auto inflammatory condition
It only made him very very sick
I don’t know the dosage it was more than a few years ago .

 

[keithmoon]

my little penguin.....
Thank you very much, and I'm so sorry to hear about your child. I hope he is doing well.
I have had six of these since April of this year. I don't think they have done any harm, but I know they are not helping at all. I'm leaning toward pulling the plug, and this helps . I'm scheduled for my next one in two weeks. I was supposed to have a video visit with my GI yesterday, but he's out with covid and unreachable until who knows when. One of his nurses tells me they have patients who are "thriving" on this stuff. I've been scouring the internet for a first person experience, and you are the first and only one I have found. Maybe the rest are in hiding.
Thank you, again.

 

[my little penguin]

What other meds have you tried for crohns ?
Ivig is used for primary immunodeficiency patients mostly
Anything else is case study
Ilaris is another drug used as one of case study
For crohns
My kiddo is fine
Takes Stelara and methotrexate for crohns /arthritis and then ilaris for Sweets syndrome
This combo keeps things stable

Always good to get a second opinion
When we though he just had “hard treat “ crohns
Turns out crohns was mild
He just also had juvenile arthritis
And had an auto inflammatory condition known as Sweets syndrome which muddied the waters


Hope you get a plan soon

 

[keithmoon]

Started on Asacol in 2005 when I was finally diagnosed, after many, many years of looking for answers. I'm 69 now.
Anyway, next was Pentasa...nothing. Then 6mp... horrible side effects then Remicade (allergic reaction) was taking prednisone with all this stuff, on and off. with the dosage creeping ever upward. Next came Cimzia ,did nothing for me except one infection after another. Went for several years on nothing but Pred. Then came Stelara ...flunked out. At this point I should point out that my body is extremely sensitive to many medications, especially autoimmune stuff. Tried Entyvio last year, every infusion produced extreme pain in my legs. Tried to suck it up but was getting worse after each one.
By then my Pred was up to 20mg a day, and barely keeping up. Right now I'm back and forth between 20 and 25.
And now the Ivig. Oh, and three bowel resections between 2007 and sept 2021. I would like to try Humira, but doc says no way.