I have Common Variable Immunodeficiency and was diagnosed a little over two years. I have been undergoing IGIV treatments during that time.

I may be participating in a research study for subcutaneous infusion of immunoglobulins (SCIG). I would like to find out who else is receiving SCIG, how long, and how they compare it to IGIV treatments. The research study staff member told me that many European patients have been undergoing SCIG for many years.

Thanks for your time.
Brijette

Dear Brijette,
I'm 16 with cvid i have igg plus all subclasses diffency plus iga and igm diffency. I recive 48grms of intragrams every 4 weeks last year after having so much trouble with veins and infections in ports and hickmans i decided to try sub cut at first i thought it was wonderful but over time i was getting sicker again like b4 i had iv infusions i was having 10mls 4 times a week after starting out on 20 mls a week after 3 months on the subcut i was ending up in hospital everyother week for a different reason everytime it was then decided by my team of specialist that it wasnt working for me and that i had to go back onto iv infusions i had a port inserted and i have been well since i went back onto it and havnt been admitted to hospital since being back on it except for one occasion.
Hope this helps
Kell

Hi there- there is a posting with lots of follow ups re. subcut on the pia site (UK) www.pia.org.uk which you might find interesting to look at.

I went on to subcut almost three years ago (after 3 years on IV) and find it great. I have terrible veins and IV was a nightmare! I am on 70mls /10.5g per week and the infusion takes about 2.5 hours (with two pumps running simultaneously). Yes it leaves ugly big lumps but these do go down over 24hours. Most people do seem to infuse into the tummy but I find the thighs better- more painful to put the needles in but less tender afterwards. As for symptom control I do much bettter on subcut and enjoy the freedom it gives me as I could never have done IV at home.

Give it a go- you might find you like it and if you are lucky like me you might even feel better on it. My immunologists had to play around with the dose a bit before we got it right so be patient! I am infact on less that I was on IV (21g over a fortnight as opposed to 30g), as giving it weekly seems to keep me at a better level.
Good luck,
Rabia

Hi,
I just had my first subcutaneous infusion two days ago and the absorption has been very slow. I still have a bulge where the fluid went in and my abdomen is still very tender. I'm wondering, does absorption improve over time? Should I stick with the sub-q because the IVIG once a month is looking very attractive at this time?

You mentioned that the thigh is better--that will be my next site. I'm going to give this just a few more "go's" and then I may be back to the infusion room if my experience doesn't improve. Can you tell me what your early experiences were (anyone with experience with subcutaneous infusions) and if your body's absorption improved over treatments?

Thank you!
Courtney