IVIG #3 Update Page


My infusion started around 2PM and it is 5PM.

I’ve had severe headaches with my first two infusions, the headache with the last one being beyond what I could tolerate. We will keep tweaking things each infusion until we figure out which changes result in less severe of a headache.

Changes this time:

  1. I am taking Benadryl instead of Clariten. Benadryl has more of an effect on the central nervous system than Clariten (that’s why it makes people drowsy), and we hope that will help decrease the severity of the headache. I am writing this with two Benadryl in my system, so kindly ignore any errors. 🙂
  2. We are infusing a full liter of saline before and after rather than half a liter before and after.

I have watched Along Came Polly and the latest Last Week Tonight with John Oliver. Now I am going to attempt to get some writing done, assuming my brain isn’t too slow from the Benadryl. I am working on an article on the frequency of patients who have a salivary gland biopsy positive for Sjogren’s, but are not SS-A/B postive. If writing doesn’t work out, my backup plan is to work on organizing my digital medical records or to figure out how to fix my blog theme – I accidentally reset it.

Here is a picture of my work station. I circled the bag of IVIG and the pump – how neat is it that I don’t have to be attached to a pole!?

It’s 11PM. My infusion finished around 9:30 at which point I took more Benadryl. My blood pressure stayed up during the entire infusion this time, even with Benadryl. My body deserves a gold star for that. I have a teensy headache already but otherwise feel fine. I’m going to stretch, eat some chocolate, then head to bed. I’ll update tomorrow!

1 day out

I just woke up and feel totally fine. I am taking Benadryl throughout the day today. I was tempted to skip it since I don’t have a headache, but I don’t want to tempt fate.

It’s nighttime now – still totally fine. My biggest struggle today has been being bored and drowsy from the Benadryl. 🙂 My family all said I should go get fluids tomorrow to encourage my body to continue tolerating the IVIG so well. I agreed I’d do it this time, but next time I’d like to try to go without if I’m not having any major side effects.

2 days out

I slept very well. I woke around 9:30 with an extremely mild headache made worse with movement and mild sound sensivity. I took clariten instead of Benadryl because I didn’t want to be a zombie all day. I got 2 liters of fluids infused between noon and 3. The fluids didn’t affect the headache, although I did hold all of them without a bathroom break so I must have been dehydrated.

It is now 4PM and the headache hasn’t changed much since this morning. It is moderately painful if my head is jostled (riding in a car, someone bumping me, eating hard food) but otherwise, it is very mild. The pain does not increase or decrease depending on position which is good. I am hoping the headache continues how it is and doesn’t get any worse!

3 days out

I just realized I didn’t update, and my family might be worried something went wrong. Last night the pain was much worse when lying down in bed. It was enough pain to keep me awake, but not excruciating like last round. Plus, I am not good at falling asleep anyway. I took Tylenol and a prescription dose of ibuprofren (ER doctor suggested this) which allowed me to fall asleep around 3:30. The headache today was the same as yesterday and no worse with lying flat. I took Tylenol and ibuprofen throughout the day, and a Zyrtec this morning to try and help with it. The only other side effect, which could also simply be a symptom of my regular illnesses, is fatigue. I think it’s safe to say there won’t be any excitement this round – just lots of boring updates on my headache. 🙂

4 days out

My headache is pretty much gone with the help of Tylenol and ibuprofen. I had issues sleeping last night, so only slept 5.5 hours. This makes my autonomic neuropathy symptoms flare up, so I was nauseous due to gastroparesis. It was still a good day – just not a productive one. 

5 days out

It’s safe to say no new side effects from this infusion are likely to pop up. I started noticing the headache creeping in earlier so I took Tylenol and it receded quickly – otherwise no headache. I have been lying around all day, watching [Love](http://www.imdb.com/title/tt4061080/) season 2 with my sister. My parents sent us steaks for dinner which were delicious!  

If I don’t update this page over the next few days, it’s because I’m fine, not because something bad happened!


9 thoughts on “IVIG #3 Update Page

Add yours

  1. So happy to hear you’re tolerating it better this time. I’ve been reading your blog for awhile and it helps encourage me. I too have just started using IVIG for POTS. I had my 3rd session last week. My first session in January led to Aseptic Meningitis, as you got the first time too… By switching brands and taking more steroids I am tolerating each session a little better each time now (though my worst symptom is a constant headache for 4 years so so far IVIG has only made my headache A LOT worse). I do a tiny dose (10g) weekly, so my next is in 2 days. I wish you the best of luck. May IVIG help us both heal!

    Liked by 1 person

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