The Week After IVIG #1

Some people have been asking about how I am doing (thank you!), so I thought I would post an update. Today is Monday and the infusion was Wednesday.

I developed a bad headache on Thursday. I wasn’t concerned about it being aseptic meningitis since there was no vomiting, light sensitivity (photophobia), or sound sensitivity (misophonia). However, it wasn’t pleasant. I couldn’t move my head without it feeling as though it was in a vice.

After resting in bed all day, I fell asleep around 7PM. I woke up at 10PM and the headache was much worse. After awhile, I decided I should take steroids to try and decrease inflammation, which would in turn decrease the pain. (Don’t randomly decide to take steroids unless your doctor has told you it is okay and has instructed you how to do so.) The steroids didn’t help with the pain right away, but they did help me get right to sleep.

Side note: Steroids used to energize me. I think steroids making it difficult to stay awake must point to some sort of endocrine abnormality going on since they’re known for causing insomnia, however if it exists, it is yet to be uncovered. I do have a slightly blunted adrenal response to ACTH testing, but it isn’t clinically significant. Anyone else?

Friday, there was no head pain if I was still, and only a moderate level of pain when I moved. Steroids for the win! I took the same dose of steroids as I took the previous day and rested most of the day.

Saturday I had no trace of a headache whatsoever. I took half the steroid dose I had taken the previous 2 days. I went to my cousin’s funeral, and while I would have been there even with aseptic meningitis, I was relieved to be able to attend without a headache. She died of Huntington’s Disease. It’s a horrific, fatal, genetic disease. It would mean a lot to me if you took a moment to learn more or donate – here is the place to do it. We are so close to a cure.

Sunday I woke up with a headache. The IVIG headache feels very specific (at least to me) so I knew what was going on. ARGH. It was mild, but I was disappointed since I thought a few days of steroids had totally gotten rid of it. It was decided I would do a steroid taper since the quick steroid burst didn’t do the job.

My doctor and I developed a plan that from now on, I would take steroids the day of my infusions and the day after. Hopefully this will prevent the headaches in the first place; they are much more difficult to get rid of than they are to prevent.

Today, the headache is a little better than yesterday. I am going to see my endocrinologist ~2 hours away. The reason I see an endocrinologist is because I am positive for an antibody seen in adrenal insufficiency, and as a result, I need monitored for a variety of issues. It should be a simple appointment since I have nothing I want to discuss. My Dad is driving me which is great; I love the one on one time I get with people on the way to my appointments.

5 thoughts on “The Week After IVIG #1

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  1. Hi, Jackie. I’m glad your’re feeling better. I have been on immunoglobulins for 4 years for PID. I used to do the IV route but started having allergic reactions that just kept getting worse even with pre-medications. I saw a specialist who recommended the subcutaneous route because it has less systemic side effects. It is a pain literally to poke myself with 4 subq needles, but I’ve been able to continue my therapy without threat of anaphylaxis with this route. It might help you as well.

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  2. I had two spinal taps and the resulting headaches were the worst I ever experienced and I have a high pain threshold, so I think I understand what you experienced. I hope you never have to go through that pain again. At least a spinal tap headache is relieved a bit by laying flat, but sounds like there isn’t any of that relief with the ivig one.


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