Upon finding out I had CVID and would immediately need to start intravenous infusions of IGg antibodies (IVIG) every 3 to 4 weeks for the rest of my life, I naturally had a few questions for my amazing immunologist Dr. K:
Question #1-What the hell is IVIG?
Question #2-For the rest of my life!!!!! Are you absolutely sure?!
The answer was yes!
Question #3-What are these IVIG treatments going to do to me?
You see, I’ve had enough experience as a patient in the healthcare system to know that even something people in the Zebra community refer to as “liquid gold” is going to produce side effects. Obviously, some of those are good IVIG side effects like:
- “Getting sick” like a “normal” person…”Buh Bye sore throat that I’ve had for a solid year!”
- Feeling better overall each day.
- Regaining the hair on top of my head. (We’re still working on this one! I was recently diagnosed with Hypothyroidism!)
- Reduced symptoms from my numerous autoimmune conditions (Fibromyalgia, Chronic Fatigue, Interstitial Cystitis, Sjogren’s Syndrome).
Unfortunately, I did and still do experience some bad IVIG side effects -though the good news is the severeness and longevity has decreased over time. Below, I will first list the side effects before, during and after my first IVIG treatment in November of 2017. Then, I will list my current side effects before, during and after my IVIG treatments.
(I would like to note here that I have never received IGg medication through subcutaneous administration. Therefore, I do not know much about the subcutaneous treatments.
So, here ya go–the bad, the “badder”, and the “baddest”! Are you ready?
IVIG side effects before, during and after my first five hour treatment in November of 2017:
- Extreme anxiety (pretty self-explanatory, right?)
- Lack of sleep from worry (This lack of sleep was also a result of my staying up all night googling everything I could on IVIG treatments. I would NOT recommend this.)
- Fear (I hate needles and pass out and/or nearly pass out every time someone takes my blood.)
- Physical pain (My veins are really small for some reason in my arms and I have a long history of frustrating even the best needle wranglers. After several attempts and the possibility of me vomiting, Nurse Ashley ended up using the smallest butterfly needle on hand to start the IV.)
- Emotional Release (I’m not sure I would actually classify this as a bad side effect. Looking back, I would probably classify it as a good side effect.) I just unexpectedly and uncontrollably started crying as the first drops of the IGg medicine entered my body. My reaction wasn’t actually a reaction to the IVIG treatment at all though. I actually felt a sense of validation and relief which I’ll get into in Episode 4.
- Nausea (Nurse Alice had to stop the IGg IV and load up some Zofran to keep me from vomiting!)
- Extreme Fatigue (as the minutes turned into hours the medicine made me sleepy so much so that I actually fell asleep which was totally fine with me as I’m always up for a good nap!)
- Loopy-feeling (I felt like you do when they prep you for surgery and give you the anti-anxiety and pain meds through your IV.)
- Blurred Vision (about half-way through the treatment my vision started to blur and actually still does but then goes away within minutes of the treatment’s end.)
- Major Migraine (Nurse Ashley did, and still does, give me four ibuprofen and an allergy med prior to the start of treatment to prevent some side effects and also the potential of my body to reject the antibodies in the IGg medicine. However, Dr. K also prescribed a migraine medication to take after my IVIG treatments specifically for this side effect because I am prone to headaches and migraines.)
- Multiple trips to the bathroom to urinate (Now, if you think about it this makes sense. In my case, I am receiving 40 grams of liquid that does contain my medicine, but also makes me have to pee a lot! Plus, I drink as much alkaline water as I can the day prior to and of my IVIG treatment so I experience less side effects and the nurses can find a vein easier. If you aren’t familiar with alkaline water, it’s water that claims to have a pH of 9.5 or even 10 and contains electrolytes and minerals like magnesium, potassium and sodium among others. You can find it now at most grocery stores, convenient stores and gas stations. Alkaline water sounds like a hoax, and it may be, but all I know is when I drink it I feel more hydrated than I do when I drink plain water. That’s just me. I’m not advocating for it. I’m just telling you what it is. If you want to read what the Mayo Clinic, one of the medical websites I find most reliable, has to say about it click here. You can certainly hydrate with plain water, Gatorade-like drinks, vitamin-water drinks, etc…whatever you prefer will help you on infusion day!)
- Mild fever (Nurse Alice instructed me to take four more ibuprofen about 1 to 2 hours after I got home to keep my fever down.)
- Fever (I had a fever the evening of my treatment and the following day. I treated this with Ibuprofen.)
- Extreme Headache (I did have to take the migraine medicine Dr. K had prescribed the evening of the treatment.)
- Extreme Fatigue (All I could do was sleep for the rest of the day after receiving my treatment. The following day I spent much of the day resting or sleeping in bed. Two days after my first treatment the fatigue was pretty much gone.)
- I did not feel any immediate improvement in my condition after my first treatment. Maybe some people do, but for me it took 4 to 5 treatments before I really started to notice a difference.
IVIG side effects I currently experience before, during and after my treatments:
- A feeling of “ugh, I don’t want to go” begins a few days prior to my treatment date.
- I still feel a little nervous the day of my treatment because of the needles. I don’t think that will ever go away!
- Blurred Vision (Again, this occurs mid-way through my infusion but goes away quickly once my infusion is complete.)
- Fatigue (I don’t know why the IGg medicine makes me tired, but I end up having to sleep during my treatments.)
- Multiple trips to the bathroom to urinate (This just comes with the territory!)
- Headache (I do not get migraines anymore, but more of a mild headache).
- Fatigue (After receiving my infusions I’m pretty much wiped out for the rest of the day. I go home and all I can do is sleep until the next day. The fatigue is much less the day after my infusions and gradually goes away within 1 to 2 days.)
The above is just my experience with IVIG side effects from treatments. There are many others that can occur. The table below from the IG Living Website provides an excellent list of potential side effects, rates their severity and provides options to prevent them or treat them should they occur. (You can read the whole IG Living Blog Post on side effects of IVIG and subcutaneous treatments here.)
It is my hope that in writing this post, I can provide valuable information for other CVID patients particularly if they are newly diagnosed. When I was first diagnosed (and of course turned to Google), it was difficult for me to find detailed personal IVIG experiences. Of course I was provided literature that was very informative, however don’t we all want “first-hand experience” details?!
Unfortunately, because CVID is so rare, it is difficult to find first-hand information. At the expense of sounding cliche’ here, THAT is the purpose of this blog!
Come on Zebras and Zebra-lovers…lets spread the word!
Stay Zebra Strong my friends!