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.
As I wrap my head around this I am very sick right now - coming out on the upside, getting over a chest/eye/sinus infection - a very brutal one - you know the kind where you lie there with your eyes closed, waiting for time to pass & the antibiotics to work but you just can't sleep anymore (nor do you have any energy) ? Where you take tylenol by the clock because things hurt so much you can't wait for the next one for that tiny bit of relief ?
Anyway - I read that in Canada SubQ is pretty recent - starting in BC in May 2009. I have only been doing it for a week (5x) - just not fast enough to beat this current thing away I guess.
So my questions....how long has CVID actually been a disagnois ? How long has IVIG been around ? Anyone know ? If you do SubQ or IVIG, how long have you done it for ? It boggles my mind that there are all these people (us) shooting plasma...lol...and I never heard of it before.
Also, if you do SubQ - what is your dosage ? I do it 5x a week, 10 cc. I watched people on youtube do a huge syringe & I assume they do it 1x a week. I only use 1 butterfly, one guy (big syringe) used 3.
Just comparing notes I guess to see what everyone is doing.
Anyway - I read that in Canada SubQ is pretty recent - starting in BC in May 2009. I have only been doing it for a week (5x) - just not fast enough to beat this current thing away I guess.
So my questions....how long has CVID actually been a disagnois ? How long has IVIG been around ? Anyone know ? If you do SubQ or IVIG, how long have you done it for ? It boggles my mind that there are all these people (us) shooting plasma...lol...and I never heard of it before.
Also, if you do SubQ - what is your dosage ? I do it 5x a week, 10 cc. I watched people on youtube do a huge syringe & I assume they do it 1x a week. I only use 1 butterfly, one guy (big syringe) used 3.
Just comparing notes I guess to see what everyone is doing.
IVIG and SubQ are not an exact science...doses are based on your anti body deficiencies, height and weight. From there, doses can get adjusted or the time between doses can get adjusted depending upon the frequency of infections, or where in range your antibody levels fall. Then, as if that weren't enough, there can be small shifts and changes to augment any side effects you may have with treatment.
It's awful to have to wait, but really can take up to a year to get the full benefits of IVIG/SubQ.
I get IVIG once every 3 weeks...my biggest challenge has been finding the right rate of infusion and heading off side effects. I have not tried SubQ yet.
It may be good to call your Immunologist for a check up since you are getting over such a bad infection and talk about different dosing options- what you are doing right now may be perfect for you, but it might be good to hear all your options so you feel certain that this method is the one you want.
Feel Better, LuLu
if you go to http://idffriends.org/forum you will find many "veterans" there.
hope that helps
I have been doing igg since 2007