So, my condition deteriorated in the last 8 months, especially since finishing university. My consultant thinks that the adrenaline of exams and everything carried me through, and that and once it was all over i crashed. I have been continuously been fighting low grade infections for a number of years, on top of regular major infections. But, during the last months of university, and even more so since finishing, i have been really struggling with feeling unwell and exhausted on a daily basis. My infections have also worsened, which has lead me to be hospitalised at times due to the severity which hasn’t been much fun.
As a result, my consultant decided to start me on SCIg a treatment that involves receiving infusions of antibodies/ immunoglobulins into the fatty tissue of the skin. This is a blood product as immunoglobulins (especially IgG) are found in the blood and extracted from blood and plasma donations. As a result i am unable to give blood, and for me to stay well, i need others to donate blood! I have discovered that over 1,000 blood donations make up 1 bottle of immunoglobulins, i need 3 a week- pretty crazy i know.
The procedure takes about 15 minutes to set up and an hour for the infusion – start to finish. I currently attend the hospital once a week where a specialist nurse has been teaching me to do them myself so that i can do them at home, meaning i have more control over my treatment. I have so far completed 2 infusions in the hospital, the first one the nurse showed me what i needed to do and the second i managed to do pretty much by myself under her observation. I haven’t found it too difficult, and i’m surprised about how easy it was to insert the needles myself! I can’t feel the product going in, but the insertion sites do get itchy, red and slightly uncomfortable during the procedure.
There are a few side effects associated with this treatment which i have experienced so far, the first is swelling around the sites post infusion. Because i am injecting the fluid into my fatty tissue, rather than directly into a vein, the fluid remains under the skin and gets absorbed slowly over time. This means that after my infusion i have 2 lumps on my stomach where the fluid sits which to go down slowly over around 36 hours- something i’m still getting used to! The second is feeling unwell/ flu like after the infusion, on both occasions i’ve felt achy and had a horrible headache for the rest of the day. Hopefully both of these side effects will be easier to deal with when i get to do my infusions from home. I can plan to do the infusion in the evening meaning i can sleep through the worst of them and feel better and less swollen by the morning!
Over the next few months, i’m hoping my health and my energy will improve as my immunoglobulin levels rise/ reach a ‘normal’ level and i can return to work/ study! I’ve been told that it can take around 6 months before i see a noticeable difference and i should definitely see a change by 12 months if the treatment is working for me. I’m trying to stay positive, at the moment i’m unable to do much besides potter around the house which has been frustrating and i can’t wait to feel better!
Yeah, so thats is my little infusion update! I hope this post is informative for those who don’t know about immunoglobulin replacement therapy and why its used- whether you are a PI patient or were just curious! If anyone has any questions feel free to drop me a message.
Winging it since 96 