Starting IVIG, any advice?

[Kelley170]

Hi!

I am starting IVIG this week, and was wondering if anyone has any advice re: what to plan for the few days after the infusions? My infusions will be on Wed and Thursday. I had planned on going out of town to visit my kids over the weekend, but am wondering if that is a good idea?

Also, are there any particular snacks or drinks that are best while having the infusions?

I will be pre-medicated with Tylenol, Benadryl, and Solumedrol. I read in previous posts that pre-hydration is vital, so I will make sure I drink a lot!

Any advice is welcome!

Thank you!
Kelley

[meirish]

Hi, I have 5 autoimmune diseases and have been on IVIG since fall of 2006....once a month 80 grams of product with the same premed drugs that you take. I can tell you that drinking fluids the couple of days prior is important but don't overdue it. I don't know how much solution that you will be getting. I get 800 millimeters over 6+ hours. Our blood pressure can increase some just because of the amount of fluids we drink prior plus the fluids we get with our infusion. Might want to check with your doctor about how many cc's or cups you should drink days prior. You learn as you go.

When I started I got 800 ml's or cc's for two days in a row to get my blood level up and then went to the one day a month routine. Many times the first couple of times can be enough that staying home for that weekend is probably a good option. Headache is common and feeling rather achey, like the flu is common. I had more mild symptoms after every infusion for several years and it has gotten better as time goes on. The day of infusion I don't plan much that evening and the next day or two as I would feel wiped out. By 7PM day of infusion I still usually get a headache and have to remember to take tylenol right away as this helps a lot. Taking fluids the night of infusion is also important. If you are urinating a lot the day of the infusion you know that you were hydrated enough.

I also slept a lot after the first 2 days of my infusion and was more wiped out than I expected. It is so hard to know what to expect but the one thing is to be able to keep in touch with your doctor or infusion center nurses the evening of your infusions. My doctor sent home prednisone to take if needed. I was to call with any problem and they would tell me if I needed to take the extra prednisone or steroid tablet. I did need to call and ordered to take the prednisone tablet.

I was prescribed infusions for my Myasthenia gravis and I am now 79 years old and still driving....have many not so good days but the infusion has been worth it. The infusion center where I go has recliners and we can be up to the bathroom and sit at a table to eat our snacks or lunch. Most of us bring our lunch and beverages but they do have a fridge and some carbonated water for us to drink along with a couple of types of snacks. Always make sure to bring snacks and a sandwich if you are there over a meal time. I always bring a big pop and a bottle of water. They have coffee and hot chocolate/microwave. I have been to 2 different centers and they are pretty similar.


During IVIG most of us sleep a lot, read, play with a phone or tablet. It is really a nice break in life. We always say that it is the only time we are accountable to no one. Can't work or do anything for anyone. Sort of a few hours of freedom from life. They have heated blankets and when you cover up and snuggle down you can really nap. You will need a few months of IVIG before you get adjusted to the procedure enough to relax. Good luck. meirish

[Kelley170]

Meirish thank you for the details! That really helps. Sometimes the worse part for me is the unknown!
I hope you are doing well! Glad to hear you are still driving at 79! I'll be 52 tomorrow, and hopefully I can keep up with you!:-)
All best!
Kelley