Subcut immunolglobulin therapy

[kane18]

Hi,

I am recently new to the forum and would like to discuss subcutaneous immunolglobulin therapy, those who are on it what has your experiences been like doing it? What areas for injection are preferred? How many doses do people do a week or do they prefer administering their whole dose in one day?

I was diagnosed 7 months ago at 26years old and have been on intravenous therapy which has worked wonders on me and my health. I have decided to switch to subcutaneous therapy as the time I require off to administer the IVIG is interfering with my work as I have to take an afternoon off every 3weeks. I am on my 2nd "lesson" on using subcut and I find it very uncomfortable and I have pain a few days after around the site where I administered the Immunoglobulin. I also find that injecting into my legs is less painful than my stomach area, which can be sore days after. I am losing faith in this method and would like to ask for others to share their experience with subcut as I want to give this method a good chance.

Thanks

Hannah

[john]

Hi Hannah, and welcome to our forum.
I too, recently switched to subcut, after many years of trouble-free IVIg.
I have to say that subcut is also trouble free for me ( touch wood), although I do miss the hands-off of IV, where all that was needed from me was to turn up at the clinic every three weeks and hold out my arm!
I used to have 55 grams of product when having IV, and that means I now have 90ml every week by subcut.
I am using Hizentra and a chronos pump by the way.
I use four sites, always on my belly, one week above my navel and the next week below.
It rarely hurts pushing the needles in, which surprises me really, because I always imagined it would be painful!
The infusion time is about 2 hours and it takes me about 30 minutes to get everything sorted out before I start.
When it's over and I take out the needles I have four red marks and four sizeable bumps, so when the sticky plasters are on I give the area a gentle massage, and this makes it feel more comfortable.
Wearing tight waisted trousers is a no-no after infusion, I seem to gain a good inch or two on my waist, but all is fine the next day!
At the moment I don't have the option of reverting to IVIg, so I guess I'm lucky that I don't have issues with sub-cut, apart from begrudging the time I spend each week all wired up!!!!
The plus side is that my levels are better than they were with IV, and the gastric problems I had for years seem to have resolved with sub-cut, and for that I'm truly grateful!!!

[elained]

Hi Hannah,

I had 11 subcut infusions, and found them easy to do. I ALWAYS used the tops of my thighs.

I infused just once a week, and used the face of a clock to locate my sites: 12 and 6, then 3 and 9, then 2 and 8 then 10 and 4, and so on. The same clock positions on both thighs.

I am now on IVIG, which I hadn't tried before subcut. I have immune responses to the IgG, so my immunologist wants to space out the assault on my body to once a month instead of weekly.

I really liked subcut. I miss it.

Hugs, and welcome, Elaine

[glowing]

Hi Hannah and welome from me too.

I have been doing subcut for nearly a year using two needles, which only takes an hour a week to complete my treatment with Subgam. When I was training to do it I was surprised at the size of the needles that had to slide under my skin into fatty tissue in my tummy. I must admit it was quite uncomfortable, though some nurses did it better than others. When it came to doing it myself I asked my immuno nurse if I could use Emla cream when at home. She told me it wouldn't be necessary because the needles delivered to my home will be a lot smaller than the needles used in hospital. Well they certainly are, which makes a lot of difference. So I've been wondering what size of needle you are being trained with.
Good luck with it and I hope you'll soon be much more comfortable.

Glo

[kane18]

Thank you all for responding to my queries, it feels good to discuss this with those who have and are going through the same experiences.
Elaine, that face of the clock is very helpful hint which I will try, I find my legs are less sore than my tummy. I am on 50ml so I shall try various distributions which will work best for me.
I feel rather bruised in my tummy much further away from the site I injected which is unpleasant. I miss IVIG however I will persist on giving subcut a go. If anyone else has helpful techniques please let me know.

Thank you again, Hannah x