People who need to have immunoglobulin therapy can choose to have either subcutaneous immunoglobulin (SCIG) or intravenous immunoglobulin (IVIG) therapy at home through self-administration.
The key things are that you are given a choice based on your clinical circumstances and what suits your lifestyle the best, that you are trained and comfortable with what you are doing and have the best support from your clinical team in case of problems.
You should also receive an annual check, sometimes known as a patient audit, from your immunology home therapy team to ensure that you are doing the procedure correctly. This is a best practice recommendation to keep you safe.
People’s experiences of their choice of immunoglobulin therapy
Why I chose subcutaneous immunoglobulin (subcut)
‘Hi, my name is Drew. I’m a graphic designer from Essex and a CVID patient of 17 years who does subcut home therapy.
I started subcut about eight years ago, so rather than going to the hospital for one whole day each month and missing work or studying (when I was in school, sixth form or uni), I now have the freedom to do my infusion when I choose, in the comfort of my own home.
The training took about a month (four infusions), then one infusion in my home under the supervision of the nursing team to ensure that I was doing it all correctly. Since that moment I haven’t looked back.
My infusions take approximately two and a half hours (with a cup of coffee somewhere in the middle) and are so simple to set up. I draw the immunoglobulin into syringes, connect the syringes to small special needles, then pop the needles into my stomach area and press ‘GO’… SIMPLES! Then, I put my feet up with a movie, an Xbox game or a bit of design work.
Reading this I guess you are already worried about doing the needles. Don’t be. I had such a fear of needles, but these ones are so small you barely feel them. Plus the flexibility of choosing when to do your infusions and having complete control over them is very gratifying.
These few little things helped me to own my condition, to realise it’s not a curse but something to allow me to be ‘normal’ and live how I choose.
I decided to make the switch to subcut because now my infusions take only two hours instead of all day in a hospital. I am able to do it all myself, so there is no need to wait for nurses or doctors to assist: as we all know they can be very busy some days. Also it allows me to be more flexible rather than worrying each month to get my infusion on the right day and then feeling rough if I don’t. I can do my treatment any time in a week, in the mornings, late at night – whatever suits me. Subcut suits my very mobile, active lifestyle much better than intravenous did.’
Why I now have IVIG
‘There are a lot of great reasons to choose subcutaneous infusion, and since the age of 12 it was my preferred choice. It allowed me a lot more control, particularly at a younger age, when my veins were weaker and more prone to failing. It granted me greater independence, and while I was away at university I was able to look after myself completely.
Of course, there are the obvious medical advantages of having a more even and steady rate of medication (I was infusing twice a week) but despite all of this about ten months ago I made the switch to IVIG after a winter of frequent infections.
I had a total of three sessions of training for IVIG infusions. The trickiest part (as you would expect) is getting the needle into your vein correctly. During training it took me some time but now I’ve become quite proficient at it and rarely miss. At this point I usually require some help connecting myself to the drip and bottle of medication: it’s very difficult to do so one-handed.
Once connected I control the rate of the drip. I usually have to start off slowly and, depending on how comfortable I feel about the vein, I can increase the rate to whichever speed I want it to be.
The only time I require help is when I need to switch bottles. My dosage means that I need three separate bottles, totalling 45mg of medication. The switchover takes only a few seconds and I can begin the infusion straight away. The total process takes a few hours – it really depends on how comfortable you feel with the needle placement – and is completely painless.
After the infusion has completed I have to remove the tape (usually the most painful part for me because of my hairy arms), then I can continue my day. I only have to do infusions once every three weeks and although I do sometimes feel more tired towards the end, IVIG has allowed me to get away for a couple of weeks on holidays without the added thought of taking medication with me. I’ve also managed to start running regularly: I couldn’t do this before because of the lumps and bumps from my subcut infusions.
For now, at least, I’ll be sticking to IVIG over subcut.’