IVIG infusions

Dear Ones, please know that if you get an IVIG infusion, it should be given slowly. If not, there is a danger of getting aspectic meningitis. That horrible outcome happened to me, and I would not want that to happen to anyone else.

It seems to happen quite often around here. There are other ways to prevent it, such as pre-meds and hydrating very well before, during and after.

My IVIG symptoms got worse after my splenectomy. Even with all the pre meds and drinking water during the infusion I was under the weather for a couple of days after. Slowing the drip down helped a lot.

I guess I am the minority. I had IVIG treatments for 3 days in a row, and I had no side effects.

My experience is that this depends on the person and their tolerance level to the medication. When I started, my hematologist was using Privigen, which is a very thick serum. The max rate I received it at was 75 (I think that's mg/hour but am not sure). After a while, the doctor's office switched to Octagem. While I take twice the dosage of it to equal one bottle of Privigen, I can handle it at a faster rate because the liquid is thinner. I had terrible breathing issues, at first, when using Privigen. But I pr-treat with 5 mg of decadron and Benadryl. After that, I sleep through it, which is nice.

24-48hrs after IVIG I would get what I called a body migraine. Severe pain from my head to my butt could barely move my back or neck. Than I would start vomiting (sometime projectile). I would end up in emerg getting toradol and gravol. Than after a day or two I would feel better.

When I tried to explain my side effects to the doctors they just shrugged it away. When I asked for pretreatment they said it wasn't needed (no side effects). When I said but this is what happens they said isn't a side effect because they happen immediately. That is when I started refusing to have IVIG.

At my first appointment with my new hemo. We discussed treatments when IVIG came up I told him point blank if it was between IVIG or bleeding to death I would rather bleed to death. And that is truely how I feel.

Julia - they are so, so wrong. Side effects do NOT always happen immediately and it sure sounds like you had aseptic meningitis. Unbelievable that they don't know that!

When I had Octagam infusion several years ago for nose bleed I was in hospital. Developed a dreadful headache & it was slowed down over 2 days.
I am having another (don't know the brand) soon to get platelet levels up for a minor procedure. It will be in outpatients. Any advice as to what to expect, preparation etc. welcome.
mj

For whatever reason, the hospitals tend to give Octagam slower than the treatment rooms at the doctor's office. It must be because they figure that you're going to be there a while. I get 2 bottles of Octagam 2 times a month. Each infusion takes about 4-5 hours with Decadron and Benadryl for pre-meds. I get some nasty headaches from time to time, but it's a small price to pay compared to some of the alternatives I've read about in this forum.

I returned to getting treated with IVIG over the last 2 years. I had completely forgotten about the side effects I got after. Each infusion I began to notice I need a few days after to rest, and typically I feel flu-like and achey all over in the evenings after and the migraine could sometimes appear well over 24hrs after treatment. I also get very emotional and sad but that I understand I have to let that pass and deal with it while everything goes through my system. I am treated with pre-meds of Tylenol, Benadryl, and Prednisone, and they help through the 6 hour infusions I receive over 2 days. I recently began to to take a small amount, 10mg of prednisone, as needed for about 2-3 days after to help curb any migraine coming on. I might as well add that marijuana does help me with the joint pain and any nausea I may feel after.