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?
I made a totally stupid mistake last night and forgot to unclamp 2 of my tubes before starting the infusion. I didn't realize the mistake until it was over, so I got the entire infusion in 3 sites instead of 5! Thank God I'd slowed it down with the extra rate tubing, otherwise it would have been intolerable!
so...that's a tip...make sure you unclamp tubes before starting the infusion!
question though you dont mean your taking your needles out and putting them back in again do you? I was told thats a no no (once you take them out leave them out)
I just once put it in a place on my leg where I couldn't move after I put it in and it was very painful.
I do find that there's less pain and swelling than if I put them in my stomach. When I used my stomach I'd be bloated for 3-4 days and have big knots in my belly. The combination of slowing the infusion and using my thighs has pretty much eliminated the knots.
I have never heard of a button needle. Does it literally look like a button? So you just stick it in? I haven't had any issues with the butterfly, actually feels easy to grasp to me. But I've never tried a button :)
I also use the 9mm needles and I think they're too long for me as well, but my pharmacy believes that if they're longer it's better than too short...I guess they want to make sure it gets into the fat layer. I don't have as much trouble with knots under the skin on my legs as I did on my stomach. Even this most recent time when I was too doped up on Benadryl to realize I hadn't unclamped 2 of the tubes, the knots only lasted a day.
I think that this coming infusion I will take the prednisone in advance, and wait until the needles are in to take the Benadryl. Since I don't really have anyone to help me with this, I really have to figure out a way to handle the pre-meds and stay alert enough to prep everything correctly.
By the way, have any of you ever tried clamping your tubes near the needles and priming them up to the clamp? I don't know if it will work or if the clamp will prevent me being able to push the Ig up to the clamp. Please let me know if you've tried it, and whether it worked. :)
Also, what size needles do you use, and if you don't mind, please share your height and weight. I'm 5'2" and weigh 120 lbs. My pharmacy seems to think that I need 9mm needles, but I think they're too big for me because they keep poking me throughout the infusion.