How do you feel after ivig?

My daughter (who is 19) is having her first ivig sometime this week, but not sure which day. She has an important work thing on Wednesday. How did you feel during/immediately after ivig, and if you weren't well, how long was it before you felt better?
Thanks!

I felt fine afterwards. But I did get a headache two days later - which lasted a couple days. It was annoying but not severe.

They often/normally give you a 'pre-med' which includes a bit of Dexamethasone (steroid). This helps limit/prevent allergic reactions during the infusion. It takes a few days to fully wear off. So what I think happened is I got the headache when the Dexamethasone wore off. I took Acetaminophen (Tylenol) for it but it was mostly ineffective. I should have taken something that included Aspirin as the IVIG raised my counts over 300.

From what I've read here, some folks have no adverse affects and others have severe headaches. I think most are mild, which was my case.

Often they give you IVIG over several consecutive days - giving less per day to reduce the chance of a strong reaction. If it is given at a hospital it may only be one day. At an infusion center it could be done over 2, 3, 4 or even 5 days.

Hope this helps.

It depends on the person and how the IVIG is administered. Some people have an adverse reaction called aseptic meningitis and they get a severe headache and vomiting for a few days. It usually happens when the drip is too fast and no pre-meds are given. It is a very common reaction and yet, some doctors are not aware of it.

The best way to avoid is is to stay very hydrated (day before, day of and day after), use the pre-meds and make sure the drip isn't too fast.

Thank you very much. It's so difficult to predict what will happen in any given week right now. The doc has assured us that it will smooth out and not always be this hard.

It does get better in time, but IVIG isn't the best way to manage ITP. What else has she tried and what are her counts?

Before my splenectomy, I had wicked headaches but nothing I couldn't handle. After surgery was a different story. Headaches, sick as a dog for two or three days after. I was pre treated with meds, drank lots of water and had the drip slowed way down. But everyone responds differently.
Good luck to your daughter!

So, my daughter had IVIg two weeks ago. They did it in the infusion center over two days, and she had a slight headache over those two days. The third day she had nausea and vomiting, and a headache hovering at 10. On-call doc sent us to the emergency room since it was on a weekend, and they gave her meds to stop the vomiting, pain meds, and IV fluids, which made her feel MUCH better. Scan was clear for any bleeding.
Her platelets shot up to 248,000 within a week, but now we're in the second week and she's down to 78,000. The doc is pushing for Rituxan.
If she had a bad reaction to IVIg, will she be likely to have a reaction to Rituxan too? I guess I don't totally understand whether the reaction came from the drug itself, or from the infusion process.

IVIG can cause aseptic meningitis and it sounds like that's exactly what she had. SO many doctors are unaware of that and it's so common.

"The most common side effects of IVIg include headache, fever, chills, nausea or vomiting, muscle pain or chest pain. Slowing down the infusion and premedication can help eliminate these problems or decrease their severity. Fortunately, most patients with these side effects can be helped by slowing down the rate of infusion. Premedication with acetaminophen, antihistamines, or occasionally steroids can also help decrease side effects. Rare and more serious side effects include: blood clots8, hemolytic anemia, pulmonary edema, and aseptic meningitis syndrome."
www.pdsa.org/treatments/conventional/immunoglobulins.html

There is a huge difference between IVIG and Rituxan and Rituxan isn't known to cause aseptic meningitis (although it does have other possible side effects). There is no reason to believe that she would have a reaction to Rituxan if she had a reaction to IVIG.

Thank you for the additional info. It's slightly reassuring.
They did premedicate with acetaminophen, antihistamines, and steroids, and they did the ivig over two days. The second day was a different nurse that I felt rushed things along a little maybe, but idk whether that made a definitive difference. I'm worried about that 3% mortality rate with Rituxan, and I wish we didn't need to do it. My daughter's platelet counts seem to drop very low very quickly, and both of the doctors we've seen have recommended Rituxan as the next step. We don't live in a metropolitan area though, and I'm wondering if we should be looking a little further away for a doctor with more ITP experience. Are there specialists we should consult at some point, or is the more local doc experienced enough? How can we tell?

Most of the people who died from Rituxan had other serious chronic illnesses. It is a heavy duty drug though. The thing is, she doesn't NEED to have Rituxan. You have choices, and there are other treatments available. Your doctor should be discussing all options with you. How old is your daughter?

She is 19.

Oh no. That is terrible to hear about your daughter AsMom.
The good thing to know is that IVIG can help in a bleeding emergency. The bad thing is that the administration of it may be far slower next time to avoid the reaction. Now you know.

FWIW, that IVIG count rise and two week fall sounds a lot like others who's counts often end up respond well to Rituxan, aka a row one response in my table .

Anticipating your next question. If she decides on Rituxan, the typical (not very 'typical' so far, is it) scenario is that if an adverse reaction occurs it will usually happen on the first Rituxan treatment. It can be later, but the first 30 to 60 minutes can be trying most often.

Hope this helps.

I have had IVIG many times over the last 18 months, sometimes a single dose (1day) and as many as 3 doses (3days). Some of these were at the doctors office and some in the hospital. My doctor always gave pre-meds with a 30 minute wait before starting the IVIG. They always took at least 6 hours to administer. With this process I never had a reaction to IVIG, I just got tired of sitting in the chair.
I have also had Rituxan twice. With Rituxan they start slow and speed it up over time after pre-meds. The first time I had a slight reaction after the first speed up. They paused the pump and gave me more pre-meds and waited 30 minutes before restarting Rituxan. After that I had no issues. The second time I had Rituxan I never had an issue.
Everyone is different, there are some that cannot take either of these. Also Sandi is correct that there are a lot of other treatment options if you are not comfortable with Rituxin. There are risks with all the medications, you just have to weigh the pros and cons to make your decision.