IVIG #8 Update Page

IVIG #1 Update(4).jpg

If you read my last post, you’ll see my infusion pump was set wrong and infused the IVIG twice as fast as my body is used to, which resulted in significant side effects. After 3 days of pain, I took steroids and felt quite a bit better. I took the steroids for 5 days. When I discontinued the steroids, some side effects came back – mainly the headache. I was uncomfortable but not in unbearable pain, so I elected to stick it out. Ultimately, it took 10 days from the day of my infusion for the headache to resolve.

Going into this infusion, I have more energy than I did going into my last. I used that energy over the past several days getting my house all nice and clean, laundry done, and some food made for the week. I never know how I will feel after IVIG, so I try and get my life in order before each infusion. I hate my house being messy, so if I am going into IVIG with a messy house, I go a little crazy.

I have a blog post in my head…… It would talk about small signs IVIG is working. It would talk about my appointments last week and how my husband and I celebrated our wedding anniversary. It would inform you that I am overhauling my blog, and therefore old posts will not be available for the time being. I would share how switching beta blockers has gone. It would talk about how loving and supportive my family is, and how you can support loved ones with chronic illness the way my family supports me. (Seriously – most patients long to have one unconditionally supportive family member, how did I get lucky enough to have an entire extended family of supportive people? Who was I in a past life? If you’re reading family, thank you for being awesome.) It would talk about how this past weekend, I got to see said amazing family at my lovely sister’s graduation party, and I played flippy cup with water. Proof:

Granted I didn’t eat much (which makes it easier for me to stand), but being able to stand and do something after being out for so long made me feel pretty excited about what IVIG might be doing in my body. Usually while I stand, I have to put a large amount of my focus on not fainting…. and on not looking like I am thinking about not fainting. 😀

However, that post will not be written right now because chores took up all my energy. It is better than not having enough energy to do chores or write. My infusion starts soon, and as usual I will update here periodically over the next few days until I am in the clear.

Infusion Day

My infusion is over – including 2 liters of saline, it was about 7.5 hours long. I took a 2 hour nap during it. I feel fine and am hoping to sleep a bunch tonight and tomorrow since that’s what I did the one time I didn’t have side effects. 

1 day out

I slept 12 hours and feel fine overall. I probably could have slept longer, but I forgot to take Ambien last night. I’ve just been resting and drinking a ton while catching up on some TV shows. My husband is off work today, so I have company. 🙂 I’m a bit nauseous and I can feel a headache coming on. I’ll be surprised if I don’t have my normal post-IVIG headache tomorrow. For me, usually the day 2 days after the infusion day is the worst. 

2 days out 

I started out with no headache, but by bedtime there was a definite IVIG headache and sound sensitivity. It isn’t severe, but it’s pretty annoying and making me sort of irritable. I was not productive today, however I didn’t expect to be! 

3 days out

A headache woke me up from sleeping today, but it became much less severe after I drank a bunch of water and Gatorade. If I don’t move my head, it barely hurts, but if I move, it hurts quite a bit. Fortunately it isn’t like some of the past IVIG headaches I’ve gotten where it is much worse if I’m lying flat. I plan to spend my day watching Once Upon a Time on Netflix – such a cheesy show, but I am a fan. 

On Monday, I think I may call my case manager at the infusion pharmacy to see about switching to immune globulin that can be injected into fat tissue rather than infused via an IV (known as subcutaneous immune globulin/SCIG). It has some drawbacks, but is known for causing fewer side effects – especially less likely to cause headaches. I am 3.5 months into IVIG. I need to figure out if my insurance can recant the 12 month approval for IVIG I already have if I ask for approval for SCIG, or if they are totally separate. If it could possibly jeapardize my approval or continuing treatment in the future…. I’m not sure what I will do. I don’t want to ruin this opportunity to try immune globulin for a year, but these headaches are really getting to me!

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