Liquid gold…or, more commonly known as immune globulin (IgG). A few weeks ago, I started my first treatment with subcutaneous immune globulin (SCIg). For those of you that aren’t familiar, let me give you a quick tutorial about IG:
IgG: A common antibody found in human plasma.
Plasma: a clear, straw-like colored liquid portion of your blood that carries cells and proteins throughout the body.
SCIg: Purified immunoglobulin from healthy donors that is injected into the fatty tissue.
IG can be administered either intravenously or subcutaneously. I am infusing subcutaneously. This means I will be injecting purified IgG under the tissue between my skin and muscle.
After a few screenings with the pharmacist and other healthcare professionals, as well as dealing with the ins and outs of paperwork, insurance, and financial responsibility, I was sent all the supplies I needed to begin SCIg.
The medical supplies came in two big boxes filled with syringes, tubing, vials of IgG, typical first-aid material, more paperwork, and other specific equipment needed for the infusion process. Seeing all of this was a lot to take in at first but I was comforted in knowing that my care team from KabaFusion was going to guide me through the entire process.
I have been infusing with Hizentra for about a month now, and the most common questions I get are:
Does it hurt?
That depends on where you inject, correct insertion of the needle, and proper prep. There are 6 injections sites which means I have six needles to insert every time I infuse. Your care team will determine the number of needles; some people do 2, 4, or 6 like me, it just depends. I pre-medicate with Tylenol and Banophen as prescribed by the pharmacist, and I do believe that allows for less pain and in general, makes me a little more relaxed.
The needles are inserted in the fatty tissue of the body; for me, that is the lower abdomen. Some choose to insert in the back of the arms or thighs but so far, I have only infused in my stomach. The second time I infused I injected a little higher on my stomach where there is less fat—that hurt. I could definitely feel the difference. So, lesson learned; the fattier the better. Don’t worry, I have plenty of belly fat to go around…
The needle must be inserted at a 90-degree angle relative to where you pinch your fat. If the needle is slanted, it could cause irritation and moreover, burn.
Lastly, and probably the most important thing to ensure it doesn’t hurt is making sure the solution does not go past the needle when prepping it in the tubing. Again, this is to prevent burning when you inject it.
So, does it hurt when you do it properly? Not really. Granted, they are needles so they don’t feel like paradise, but they are relatively small and if you insert them correctly/get to know the spots on your body where it hurts less, you will be fine. I only know all of this through proper education; ask your nurse to coach you through the entire process so you can be off infusing on your own in no time!
What are the side effects?
That is entirely dependent upon the patient. Personally, the first side effect I noticed was how sleepy I get. IgG can cause fatigue and the antihistamine can cause drowsiness. I’m pretty exhausted during the infusion and after the infusion—I usually sleep at least 3 hours after if not more.
The second side effect I typically see is stomach distension. The first time I infused my stomach was HUGE! It was a little shocking to see how swollen I was but if anything, it was just uncomfortable.
My injection sites become a little tender and sore to the touch. Sometimes I have slight bruising, but nothing too noticeable unless you really look.
The last side effect, and maybe the most unpleasant is the headache that can develop after infusing. My headaches have ranged from dull to piercing. I can definitely see this getting in the way of my activities of daily living but for now, I’ve been able to tolerate them with some Advil and hydration.
Do you think it’s working?
I have no idea-- it’s only been a month! Do I think it has the potential to help? Absolutely. Have I felt any noticeable differences regarding my MG? Maybe a slight improvement in my vision but it is hard to tell. As my nurse explained, every person is different. Some people will notice effects within a month while others will see an improvement down the line after a few months.
How was it to stick yourself?
I have 6 needles that I stick myself with. Changes in quantity can be made but to start, I am utilizing 6. I am not afraid of needles per se, but the idea of intentionally puncturing my body with something sharp is not a pleasant thought either. Therefore, while the sight of needles doesn’t scare me, I think it is the unknown sensation of sticking myself that causes a little anxiety. My sticking process as of right now:
-pinch a section of fat.
-inhale.
-insert the needle quickly as I exhale and count out loud really fast.
It’s a little quirky but hey, it helps me get through it! I had never inserted a needle in anyone before let alone myself, so I was really curious as to how much pressure to use/what sort of resistance I would feel. Now that I have been exposed as to what it is supposed to feel like, I know it will only get easier with time. Also, you really can’t go too far in (at least I haven’t yet!) as the needles have plastic butterflies on the ends that prevent them from going in any further.
Why are you doing this therapy? More specifically, why are you infusing subcutaneously and not intravenously?
My care team and I decided to proceed with SCIg due to a recent MG flare I have been coping with (chronic double vision and droopy eyelids—something I haven’t experienced in years). The goal is to not only help me get off the prednisone I have been on but to alleviate some of those symptoms that have returned. We also chose to go with SCIg because, in theory, this treatment is supposed to minimize some of the typical side effects one sees when undergoing IVIG. When I utilized IVIG years back I had excruciating headaches, nausea, and fatigue. So far, the side effects have been bearable with SCIg, and I hope it will continue to stay this way!
First time infusing Hizentra with 6 needle sites.
One month in with SCIg and I am remaining optimistic. It’s an adjustment for sure, but I am confident in my ability to self-administer and take charge of my health. Now, going to let this liquid gold work it’s magic….stay tuned!
#MyastheniaGravis #SCIg #immuneglobulin #patientadvocacy #patientexperienec #patientperspective #Hizentra #chronicillness #raredisease #autoimmunedisease #neuromusculardisease #invisibleillness #invisibledisabilities
Disclaimer: This blog post is about my personal experience and is not intended to be used as a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding your health. Never disregard professional medical advice or delay in seeking it because of something you have read on this site.