Tell me about IVIG

amother

Thu, Feb 03 2022, 9:27 pm

How and why you got it approved?

Did you do it at home or infusion center? How often and how long each infusion?

Did it help for what you were treating? (And if you don’t mind to share what that was)

Tia!

Signed a confused mom

amother

Antiquewhite

Thu, Feb 03 2022, 9:35 pm

amother [ OP ] wrote:

I had it done for recurring pregnancy loss. A nurse came to my home, it was totally painless and took a few hours once a month. It was quite expensive though I don’t remember how much, but in the low thousands. It was not covered by insurance because the idiots in charge of deciding what is worthy to be considered rpl treatment don’t believe in reproductive immunology. I went along with that thinking for too many years (obviously all is bashert) until one dr just said, “Listen, we don’t know what will help, so let’s try everything.”
BH my baby is sleeping next to me, so yes, I would do it again in a heartbeat. And no, I could not afford it then and still couldn’t now, but my answer doesn’t change. I do know that it’s used for a whole host of issues, typically with good results.

amother

Vermilion

Thu, Feb 03 2022, 9:44 pm

Dc was on it the day he was born for suspected NAIT. It didn’t work because it wasn’t NAIT in the end. Then dc was on it monthly for a primary immune deficiency . We always had it done in hospital. It ran over 4 hours, sometimes more. At some points also more often than once a month. Once we tried 2 treatments back to back run really slowly over maybe 8 hours but that didn’t work for what we were trying to treat at that point (ITP) .It seemed to do the job of preventing serious infections but obviously that’s a little hard to measure. It also didn’t cure the immunodeficiency obviously. We always premedicated with Tylenol, Benadryl and prednisone before. It seemed to cause nausea and stomach upset after, but again hard to confirm because dc was a baby.

We looked into ivig for another child for AE but decided not to pursue it for now.

TLDR, I have a lot of experience with ivig. What would you like to know?

amother

Smokey

Thu, Feb 03 2022, 10:04 pm

I had it done monthly for a primary selective immunodeficiency. I had a nurse come to my house and pre medicated with Benadryl and Tylenol. It was a fight to get it approved and eventually appealed to the state who forced my insurance to pay for it. I’ve since switched to subcutaneous infusions which were easier for me- done more frequently but for shorter amounts of time and less side effects.

LolaGuac

Thu, Feb 03 2022, 10:59 pm

I have been getting it sub-Q IgGs at home, for 2 years now. It was started because my body stopped producing IgGs after cancer treatment (the disease itself can cause the body to stop making healthy immunoglobulins, but so can the treatments) I had several sinus and ear infections in a year that needed antibiotics and, finally got a respiratory infection that wouldn’t go away. That led to starting IVIG. I got aseptic meningitis after the first dose and my hematologist suggested sub-Q, which I self administer every two weeks. The health insurance approved it easily, in my situation and, after one year, sent me a 4 year approval letter. Some people have a harder time getting it approved. If it is for a primary or, in some cases, a secondary immunodeficiency, they approve it usually. If it is for something else, you are likely going to have to fight for it.

amother

Fri, Feb 04 2022, 12:48 am

LolaGuac wrote:

Thanks for sharing. this is very helpful. we are looking at a somewhat similar situation (though igg was adequate last time we Checked).
I might pm you- if that is ok?

amother

Fri, Feb 04 2022, 12:57 am

amother [ Vermilion ] wrote:

Thanks for sharing.
Does your child still require it?

amother

Smokey

Fri, Feb 04 2022, 11:58 am

amother [ OP ] wrote:

Thanks for sharing. this is very helpful. we are looking at a somewhat similar situation (though igg was adequate last time we Checked).
I might pm you- if that is ok?

If IGG is in the normal range be prepared to fight your insurance. After a certain number of appeals it goes to the state department that regulates insurance companies. That was when we were successful at getting the approval. It’s worth the effort though!

LolaGuac

Mon, Feb 28 2022, 1:29 pm

amother [ OP ] wrote:

Thanks for sharing. this is very helpful. we are looking at a somewhat similar situation (though igg was adequate last time we Checked).
I might pm you- if that is ok?

Of course. Sorry I did not see this sooner, but I am always happy to help.

amother

Cognac

Sun, Feb 12 2023, 6:17 pm

amother NeonGreen wrote:

My son had it for MIS-C
Bh it worked very quickly
He was approved because he was extremely sick , and showing many signs of inflammation and hospitalized.

Same. It was one of the treatments they gave him in the hospital. It wasn’t even a thought thst insurance wouldn’t cover

amother

Sun, Feb 12 2023, 7:01 pm

amother Ultramarine wrote:

if you did it for RPL and was able to get insruance cover, please share steps needed.

patient location NJ/NYC

TIA

Hi, didn’t realize I was op!
First of all, so sorry for your RPL. Just had a first trimester early loss and it’s so devastating. Can’t fathom a RPL. Crying

Hashem should help us all to deliver healthy babies in the right time but really soon and mend all broken hearts and wombs.

Re ivig- for us it was for a child with a suspected immune deficiency. In the end the team changed their mind and didn’t need think it would be beneficial and so we didn’t go through the process.

I hope you can find a way to get insurance to cover and be’H find your yeshuah b’karov.

Gerbera

Sun, Feb 12 2023, 8:38 pm

I had IVIG as a treatment for ITP. It required sitting in the hospital for 2 full days each time (6-8 hours each day). I needed Benadryl and for the drip to be slowed down because of the reaction to it. I had it during pregnancy several times. I can't help with insurance approvals as I was in Canada and was just told I needed it and showed up when my appointments were. It stopped working as a treatment - I required high doses of prednisone with it.... eventually it didn't work at all anymore.

amother

Mustard

Sun, Feb 11 2024, 3:02 am

Bump.. looking into options for this as an adult. Curious to hear the good, the bad , and how it helped.
Considering doing it because my immune system is in the dumps. Recently , I have had covid 2x, strep 3x, shigella, flu, sinus infection, and pneumonia.

amother

Vermilion

Sun, Feb 11 2024, 10:56 am

amother Mustard wrote:

You'd likely only qualify if you had a dx of immunodeficiency. Have you had an immunological workup or other reason to suspect a primary immune deficiency?

Otherwise I'd work on gut health, immune health, mineral status, nutrient status etc.

amother

Mustard

Sun, Feb 11 2024, 10:59 am

amother Vermilion wrote:

I do have a diagnosis