Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
....no pun intended.... ;)
1)
I've been having a problem with my infusion going too fast, and the pharmacy ships slower tubes to me, so I have a wide range of rate tubing (the only way to control the speed with my pump is by the size of the tubes...smaller tubes=slower infusion). Last week I used the 60ml/hr size tubing, and while it was better, it was still too fast, so today I got an inspiration for my infusion--I put 2 rate tubings in series to make the infusion even slower than last week! For those of you not familiar with the "in series" thing, it simply means that I attached 1 tube to the pump as usual, and then at the other end (where the needles would normally go) I used another rate tube, then attached my needles to the other end of that. The longer tubing makes the infusion slower than it would otherwise have been, and I'm having fewer site reactions than ever! There's hardly any swelling at the injection sites, and very little itching! My infusion has taken 4.5 solid hours already, and I don't expect it to be done for at least another hour & a half.
2)
If you use the EMLA cream and want to experiment with a new site, put the EMLAl on an extra place or 2 in case the site ends up being too painful or something and you have to move the needle...that way you won't have to put it in a place that hasn't been numbed.
Those are my tips...anyone else have some good ones?
1)
I've been having a problem with my infusion going too fast, and the pharmacy ships slower tubes to me, so I have a wide range of rate tubing (the only way to control the speed with my pump is by the size of the tubes...smaller tubes=slower infusion). Last week I used the 60ml/hr size tubing, and while it was better, it was still too fast, so today I got an inspiration for my infusion--I put 2 rate tubings in series to make the infusion even slower than last week! For those of you not familiar with the "in series" thing, it simply means that I attached 1 tube to the pump as usual, and then at the other end (where the needles would normally go) I used another rate tube, then attached my needles to the other end of that. The longer tubing makes the infusion slower than it would otherwise have been, and I'm having fewer site reactions than ever! There's hardly any swelling at the injection sites, and very little itching! My infusion has taken 4.5 solid hours already, and I don't expect it to be done for at least another hour & a half.
2)
If you use the EMLA cream and want to experiment with a new site, put the EMLAl on an extra place or 2 in case the site ends up being too painful or something and you have to move the needle...that way you won't have to put it in a place that hasn't been numbed.
Those are my tips...anyone else have some good ones?
Maybe I'll call Accredo and see if they have any suggestions about the leaking.
The other suggestion the nurse had is that I "choose a site with more subcutaneous matter"...in other words and area that has softer, more pliable skin with more fat. I do my infusion (normally) in the outer side of my thighs, and the skin is pretty firm there. It's a great place though because it doesn't hurt so much.
When I use the 6mm needles and my legs swell up from the medication, the needles seem to pop out a little bit and then leak. The leaking then causes tremendous stinging and is extremely uncomfortable. Mcknighw had mentioned to me at one point that her pharmacist had recommended wrapping her legs in ace bandages after the treatment. I'd done a lot of thinking about that, and decided to try using them during the treatment. So, immediately after starting the infusion, I wrapped my thighs with ace bandages and kept them on for the duration of the treatment. Then put the heating pad on over the ace bandages. There was no leaking, and less pain than any other subQ infusion I've had to date! When the infusion was over I bandaged the sites as usual then re-wrapped my thighs with the ace bandages and put the heating pad on again. After about 2 hours I removed the bandages, and slept with the heating pad on my legs. The next day there were no bruises! The only difference between this infusion and previous ones was the ace bandages, and I will definitely do that again next time! Thank you for the inspiration, Mcknighw! :D