I’m scheduled for an IVIG infusion Monday. It’s a six hour appointment. Evidently this is going to be a monthly event.
I plan to bring my fully charged Kindle. Is it rude to bring headphones to listen to music? Do I pack a lunch?
I would definitely bring headphones and listen to music. The hospital that I work at provides lunch to patients in for infusions, but I’m not sure if that’s standard. I suppose you could call and ask, but it never hurts to bring a snack.
I haven’t done a ton of IVIg infusions, but the few that I have administered were always tolerated well. It’s just a lot of waiting for the patient. Best of luck!
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Unless there are rules against it I would definitely bring snacks, headphones, and an extra battery charger to keep everything going. (I’d probably be listening to an audiobook.). Hope it goes well for you!
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I know the cancer center has free WiFi so I will have my choice of the great Courses Plus, my Amazon library or my Jane Savoie videos. The external power source is a good idea.
Hey there. I’ve been on IVIG for over 5 years now. A huge dose, twice monthly (but very recently stepped down to once a month. Yay!)
Some key stuff from my own experience:
Hydration! They should drill this into your head but it is super, awesomely, so EXTREMELY important. The worst IVIG side effects come from its dehydrating abilities (and its thickness). The typical infusion-related headache can seriously knock you on your tush for well over a day, and not drinking enough water is a big reason for its appearance. It is a migraine on steroids, and some people need to head to the hospital to abate it. You really do not want to feel this.
Start hydrating now, and continue drinking tons during and after (for at least the following week) the infusion. I drink water, but no-sugar Gatorade is a good one.
You may require saline hydration before the actual IVIG if it becomes an issue. I eventually needed this, but mouth-drinking is still important.
Be sure to take your pre-meds on time. I personally take prophylactic painkillers for the next day (be sure to discuss dosage with your doc and nurse).
I’ve always had my (5ish hour) infusion at home, thankfully. But, if you are like me, you may get peckish. Pack a lunch or at least some snacks. Listening to music isn’t rude at all. You will get super bored, definitely bring stuff to do and read.
Everyone’s experience with this stuff varies. If I’m going to get the headache, it always appears in the middle of the night around three days out from the infusion. Mega headaches are rarer for me these days, but a lower-key version is still relatively common. Not enough to make me want to sleep all day, but enough to feel like a mild flu. The night right after being infused, I will sometimes spike a mild fever and feel nauseous for an hour or so. It also tends to drain me, but my nurse says some of her patients get weird energy from it.
Keep an eye out for an allergic reaction. I had a full-body rash on my second dose and needed to switch brands. Intense itching is something to call the doc about. 
If you have any other questions, DM me any time. It’s not fun but it can really help. IVIG gave me back my life. Good luck!!
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Thank you so much for this info. In the info I was given there was not much said about hydration though they did mention headaches. I’ll go reread the handout…
It’s a six hour appointment and I suspect they will pump me full of saline. No mention of pre meds either.
The infusion will be at the cancer center. My oncologist said he wanted to be on site. To be honest, I’m glad it will be there. In the last 6 months I haven’t gone to many places other than the doctor and the supermarket.
I have CLL
Yeah, having them at home is a double edged sword. I dislike dealing with the biweekly delivery of medical supplies. And, I would much rather have more of a separation between infusions and the rest of my life, to be honest. I guess it is cheaper for insurance to not send you to a center.
Pre meds are generally something like Benadryl and Ibuprofen, but I suspect it varies between diagnoses and brands. I have an autoimmune muscular disorder.
You may eventually want to consider a port, if you don’t have one already. I’ve been lucky with my arms so far, but long term infusions will wreck your veins.
No, I don’t have a port and you aren’t kidding about veins. I spent a week in the hospital last spring with at least thrice daily blood draws and IV antibiotics. I left looking like a drug addict. Since then it’s been once or twice a month
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After doing some reading I suspect you are getting a larger dose than I will be getting.
I’m getting like, 64g per kg I believe. Even for a smaller dose, everything I said still holds true!
The GBS/CIDP forum has a lot of good info on IVIG. I don’t have either condition, but it is the best online place to ask questions and read accounts about this treatment that I’ve found.
Thanks, I’ll check it out. My goal for the day is to down the 2 liter bottle of Canada Dry “Bold” Ginger Ale which tastes ALMOST like the locally beloved Northern Neck Ginger Ale which Coke discontinued
It was a long day but I’m Ok
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Good to hear it. :))
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Overnight was rough, I was tired to the bone but the two cans of Coke I drank through the infusion and likely the prednisone kept me up but today I feel better than I have in months.
If one day in the infusion center gives me a month of feeling good BRING IT! I was impressed that my doctor popped in twice to check on me. The level of care at UVA hospital has been amazing.
And next time I will pack my own drinks.
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Ah yes, I had steroids for a bit as well. It was so difficult to sleep, those nights.
Awesome that you are feeling better!! This stuff is liquid gold (almost literally, I think it is actually more expensive than gold!) Keep drinking a ton (of water!! 
) this week!
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Those of us on long-term IVIG (or the subq version) call it liquid gold…so expensive! Hope your infusion went well…hydration is the most important. Don’t let them speed up the infusions too much (even if you think you are feeling fine!). Also, make sure they don’t switch products…that’s when the risk of reactions is the worst (unless you are not reacting well to the first product).
I was on IVIG for a year and ended up with aseptic meningitis 3 times. Not a fun experience. It would take 8 hours to infuse 30g along with a massive dose of steroid pre-meds and a dilution to a 5% solution of IVIG. After that, I switched to subq treatments and was my docs first patient to infuse subq on a daily basis in order to minimize the reactions (did a second opinion with one of the top Immunologists and she was the one to get it all sorted out). I’ve been doing daily subq for 8+ years now. But, it has improved my quality of life and reduced the number of infections I was getting…so it’s been worth it.
I premed with Allegra and sometimes Advil (since I am on it daily I’ve really tried to wean off the daily Advil dose)…but it can be batch dependent. Feel free to message me if you have any questions especially if you are thinking about switching to subq (save the veins and avoids a port, plus gives you flexibility, but you do have to deal with dosing more frequently)…I’ve been dealing with the IVIG/infusions for 9+ years for Common Variable Immune Deficiency.
Thanks. I feel so much better…haven’t gotten the bill yet though.
It took about 6 hours to infuse 20 grams Privigen. I got the itchies once and flushing once, so no real problems.
Yup, access is an issue since my best veins are in the crook of my right elbow and I’m right handed. Keeping the arm straight got old.
I have CLL, chronic lymphocytic leukemia, discovered when I got a serious bout of pneumonia this past spring. I tested neg for COVID and it responded to antibiotics but I spent a week in the hospital in isolation. My white blood cell count never went down. Prior to that I really had few health issues. It was quite a shock, to say the least
Well, I got the bill.
Before insurance the bill is $16,200.
Yup, that’s about right for a hospital or infusion center dose of IVIG! Home is a little cheaper…and subq runs around 7-8k per month. I am very fortunate that my insurance covers it 100% for now. Some people are not so lucky. Hence the nickname of liquid gold!
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Yeah, even with insurance I am in serious medical debt thanks to this stuff.
