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.
I am really in a tough spot right now. I am hoping someone in the community can help me. I was diagnosed CVID about 20 months ago with unmeasurable IGA, IGM and IGG at 430mg/dL. Since then I was on 50g/month Gammagard SD IVIG for about a year, and did pretty well on it then my immunologist tried switching me to Gammaplex for two months because of a supposed shortage of Gammagard SD (the pharmacy missed my infusion date by almost two weeks before they could get it). Both times on the Gammaplex I had flushing and tachycardia, the second time the reaction was not responding to IV benadryl and I was sent from the infusion center to the ER and ended up on a 10 day cycle of steroids to treat the reaction. I was then switched to Hizentra sub Q weekly. I did OK on this, though I told my doc that I felt like I was having reactions, just not very severe. He put me on premedication of Benadryl and Allegra every day. However, 3 months ago I had another severe reaction and had to go on steriods. Basically several hours after the infusion my heart began to speed up, I got flushed on my chest and neck and my bloodpressure started dropping. It got down to 94/86 before the prednisone kicked in. I am convinced that my immunologist sensitized me to the IGA in my IGG from the two doses of Gammaplex and now I am allergic to even the tiny amounts in the Hizentra and Gammagard SD. My doc is saying he doesn't think it is the IGA but says he is not sure what is causing the reaction... I am now 3 months without IVIG and my IGG is down to 560 and still dropping. I have had 2 sinus infections and a bad case of bronchitis in that span of time and have had to take 5 cycles of antibiotics... Has anyone else out there had this type of reaction to IVIG? What did you try and what worked for you? If it was just me I probably would have curled up and died a long time ago, but I have a 5 year old son and a 10 month old daughter and I am willing to go through just about anything to be around for them.
so sorry you are having problems ...:0(
good luck.
Pconville, thank you for the link, I was able to find the chart and was quite suprised. My immunologist represented to me that Hizentra was lower IGA than Gammagard SD, but looking at the chart it has 50x more IGA than Gammagard. Averaging that over the dosages does change the picture a bit but it is still nearly the same amount of IGA per week that I was getting before per month. No wonder I felt like crap for 4 or 5 days after every SubQ...
Kelli, I have asked to be tested for anti IGA antibodies, but my immuno said that there is no one to do them because it is not a standardized test and even if they came back positive, there is no preparation that has zero IGA, but I think you are right, from the chart at IDF, Gammagard SD has by far the lowest IGA dose per month. Kelfer, yah, I will definitely make sure that my infusion is as slow as we can go; I used to get bad headaches but found that drinking copious amounts of water and Gatoraide can prevent that from happening (if you are doing it right you will be in the bathroom every half an hour during your infusion).