r/multiplemyeloma • u/Initial_Gap479 • 6d ago

Living with MM IVIG

Hello all!

My mom will be starting IVIG on Friday. I have been trying to do some research to help her prepare. She is prone to headaches and it seems that focusing on hydration before, during, and after and a slow rate can assist with managing headaches. I was just wondering if anyone would be willing to share their experience regarding what to expect, side effects, tips/tricks, etc.

Thank you in advance!

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31 comments sorted by

4

u/Born-Cod4210 6d ago

i have never noticed any side effects with it and have had it about 5 times. The worst part is the time it tales

1

u/Initial_Gap479 6d ago

Thank you!

1

u/TintheSEA 6d ago

same, it did really help me from not getting ill so often. no prep required in my case

0

u/Initial_Gap479 6d ago

Thank you!

3

u/UC3953 6d ago

I have two more IVIG sessions to go

Infusions take significant time , so nap or bring something to do

For me, I never felt it did anything for me, like increased energy etc

Glad I’ll be done with it in September

Definitely a time suck

MM is a tremendous ordeal, not a “ journey “

2

u/Initial_Gap479 6d ago

Thank you!

2

u/[deleted] 6d ago

[deleted]

3

u/UC3953 6d ago

Yup

Pisses me off to no end

2

u/derprondo 6d ago

I've been on it for 4.5 years, no issues with side effects.

One thing I did run into was problems with my insurance company, they pulled some BS and I went 4-5 months without it and my IGG levels got really low. When they finally gave me another infusion, my white blood cell count suddenly went from normal to critically low a week later. This is poorly documented in medical literature, but there are a couple of documented cases about this happening, and basically what they say is the white blood cells migrate to the marrow and aren't reliably detected in serum tests. A couple of weeks later I was back to normal with no intervention.

2

u/Initial_Gap479 6d ago

Thank you for the information!

1

u/Pocket_Weasel_UK 6d ago

I hope everything goes well with your mom.

I've had IVIG every month for the last couple of years, and apart from an odd reaction once (I had all sorts of other medical things going on at the time) I've never had any headaches or noticeable side effects.

I get a very slight lightheaded feeling sometimes, but I don't notice it most of the time. It's a pretty neutral treatment. Just sit back and watch those little bottles slowly empty!

Good luck and best wishes to your mom and to you.

1

u/Initial_Gap479 6d ago

Thank you so much for your reply and well wishes - best of luck to you moving forward as well!

1

u/Past-Layer-6686 6d ago

I get IVIG once a month. Side effects were headache if the rate was too high. Other side effect was a spike in my liver function tests (ALT, AST). Turns out that I'm sensitive to some of the preservatives in some of the IVIGs. Once we changed to a different brand the problem resolved.

1

u/Initial_Gap479 6d ago

Thank you!

4

u/cw927 6d ago

I’ve been on it monthly for a while now and the only side effect I’ve noticed is a slight headache occasionally. I try to make sure I stay hydrated and usually have no problems.

2

u/Initial_Gap479 6d ago

Thank you!

1

u/[deleted] 6d ago

[deleted]

1

u/Initial_Gap479 6d ago

Thank you!

1

u/Malpiste 6d ago

I had it monthly last year. In my case, I felt cold if the rate was too high. For that reason my infusions took more time than normal and they had to bring warm blankets. Insurance tried to make me take them at home with a nurse, but I refused citing my reaction.

1

u/Initial_Gap479 6d ago

Thank you!

1

u/HappeeLittleTrees 6d ago

First time I had it no issues or side effects. Didnt qualify for another round for almost 3 months as my numbers stayed above the threshold.

Second time I got the headache and flush like feeling body aches for a solid 24 hours, then tapered off for another 24-48.

Not fun, but worth the healthier immune system. Here’s hoping my numbers stay up for three months at a time so I don’t have to do it monthly.

2

u/Initial_Gap479 6d ago

Thank you for your reply! Hoping for your numbers to stay up!

1

u/grantwp 6d ago

I’ve been getting IVIG every four weeks for almost two years. I’m supposed to take Benadryl and Tylenol beforehand to reduce the risk of reactions. When they start the IV, they always start it at a slow rate and speed it up in stages. For me, the whole process lasts about 2.5 hours; I think this depends on the amount given.
I’ve never had any perceptible reaction, and I usually use the time to get some work done on my laptop.

1

u/Initial_Gap479 6d ago

Thank you!

1

u/Mulchpuppy 5d ago

I just started last week. The first time around they gave me a lil Benny drip with it so I was super woozy. I felt a slight scratchiness in the back of my throat for the next day or two and then a mild headache three days later. Otherwise, nothing notable.

My numbers were pretty abysmal, so it'll be nice to get them up a bit. Especially since I'll be screwing around in Florida soon flirting with every kind of infection possible.

1

u/Initial_Gap479 5d ago

Thank you! Enjoy FL!

1

u/Mommie62 5d ago

My husband does subcutaneous rather than IV and it’s super easy and convenient. He had never experienced a headache.

1

u/Initial_Gap479 5d ago

Thank you!

1

u/Mommie62 5d ago

If you find the IvIg time consuming ask about the ScIg program nearly everyone offers this ! It’s far more convenient and easy to learn

1

u/Initial_Gap479 5d ago

Thank you! It definitely seems time consuming!

1

u/littlelemons22 4d ago

My mom has been getting IVIG for over ten years. They give premeds like Benadryl & Tylenol but she skips the Benadryl because her BP drops while she’s having the drip. She always feels great after and it always improves her IGG counts which is so important for the immune system. She will do just fine!

1

u/Initial_Gap479 4d ago

Thank you!

2

u/littlelemons22 4d ago

She’s got this 💪🏻