Reflecting on My First Month on Hizentra
I have completed my first month on Hizentra (immune globulin), and I am ready to share my experience. (It’s important to note that I am not sponsored, paid, or endorsed as a product ambassador. This column is based on my experiences with Hizentra — other people may have different experiences with this therapy.)
While learning this alternative way of giving myself immunoglobulin G, or IgG, the differences in my body’s response to the treatment have sparked a running commentary in my head.
In this week’s column, I hope to answer some of your questions about my experience with Hizentra.
Do you infuse on the same day each week?
No! It’s been freeing to have flexibility with my infusions. My prescription is for once every seven days, but I have a day or two of wiggle room.
Last week, I had planned to infuse on Wednesday night but I received a last-minute invitation to dinner that evening. I simply moved my subcutaneous (Sub-Q) plans to the following day. The option to adjust my infusing schedule is a welcome change from the days when my social life revolved around intravenous immunoglobulin (IVIG) replacement therapy treatments. Dinner and shared laughter with my friend were the priority that night.
How long does the infusion take?
Infusing takes about an hour and 40 minutes. It takes about 10 minutes to set up and another 10 minutes to remove the needles, clean up, and document the infusion, so I set aside two hours for the entire process.
Do you put the needles in yourself?
Yes, even with my fear of needles! The needles are so tiny that I don’t always feel them. My training nurse was impressed with my newfound ambidexterity when I used my right hand for my right-sided needles and my left hand to insert the left-sided ones. It was easier to see exactly where I was inserting that way.
Where do you insert the needles?
The Hizentra website has clear diagrams showing that it’s OK to use your belly, thighs, and parts of your upper arms. If you are on autoimmune dosing, however, using your arms might make them uncomfortable until the Hizentra is absorbed.
What about site reactions?
I had swelling under the skin until the Hizentra was absorbed. When I infused through my belly, it was distended for about 24 hours. On my thighs, the swelling is a bit less. It makes the skin appear tight and as if I have large mosquito bites for the first 12 hours. My routine is to take a nap with a heating pad on my belly and lap to help speed up the absorption.
I’m skinny. I wonder how it will work with my body type?
My extra layer of body fat has been advantageous for doing Sub-Q. (High-five for extra body fat!) I have plenty of areas that Hizentra can be administered comfortably. But even if I had little body fat, I would still give this treatment option a try. I no longer have to endure nurses looking for veins, and the side effects that I experienced with IVIG have been negligible with Sub-Q.
What are the differences in side effects?
A notable difference is that my blood pressure no longer drops during my infusion. That had been a serious concern for me. The post-IVIG migraine is also much less of an issue. I woke up one day with the telltale eye socket pain that people on IVIG recognize and counted how many days it had been since I’d infused. Sure enough, the headache hit at day four post-infusion just like with IVIG. But I only needed one Tylenol (acetaminophen) to bring it under control.
My acetaminophen intake is now exponentially less than when I was on IVIG. On the day I infuse, I take 500 milligrams at the start and a second dose six hours later. Most weeks, I’ve not needed any other acetaminophen to manage a post-infusion headache. I used to take 1,000 milligrams multiple times during IVIG week.
Do you get the same benefits as you have with IVIG?
Honestly, I feel I have gained far more benefit from Sub-Q than IVIG. My body isn’t expending all of its energy on recovery — I now have more energy between infusions.
I’m finding I only need six to seven hours of sleep a night and without a nap every day. I’m also finding the energy to tackle organizational projects that I had put off. This energy level remained consistent through what would have been my IVIG week. Not having the valley of exhaustion due to the IVIG half-life was like receiving the best birthday present ever.
Perhaps now I have found the energy to write my first book.
Note: This column is based on my self-infusion experience with Hizentra. Please consult your doctor before trying a new medication or treatment.
Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia.