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.
Hello everyone. Haven't posted for quite awhile, my body has been busy fighting IVIG. Started out on Gammunex a couple years ago & had the normal headache then after about one year I started getting full blown rigors & nothing would stop them, so we had to stop went on to Octagam all was great for about 5 months then had such joint pain & headache felt like every bone in my body was broken & like I had meningitis. So even with Benadryl & steroids it continued we had to stop Octagam. So now we are on Hizentra first few weeks were fine, except for the swelling in the stomach. Then one morning I woke up & was 7 pounds heavier than the day before the next day up another 5 pounds, severe shortness of breath. Saw my doctor he sent me to hospital did lasix could breathe again but potassium crashed, we got things straightened out & had my treatment & it started all over again. So for the last month I have been on a crazy roller coaster ride.
Does anyone else have an intolerance to so many different IVIG? If so what do you do? Thanks.
I would also get huge fluctuations in weight gain on hizentra along with swelling , a rash and cough , rapid HR and wheezing and shortness of breath .That was stopped immediately . It sounds like you had fluid overload ? They stopped my infusions and changed brands. It seems with every infusion the stronger the side effects . Not tolerating this one as well this month thats for sure as I sit here shivering . I have been on it one year.
Are you IGA deficient as well? Hope you get this sorted out so you can feel better soon . I am continuing to monitor ,and chart and will talk with my Dr about pre meds or slowing down the rate