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.

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/ Common Variable Immunodeficiency Support Group

Hyzentra issues

tstrong824
tstrong824

Hello my fellow zebras. I just recently had to go to the emergency room for anaphylaxis(swollen everything and couldn't breathe) after my weekly Hyzentra dose. Now I have a high dose of 75 ml every week but I have been using hyzentra for about 6 months now and Igg products for around 3 years. I never reacted well with my Ivig, always had severe headaches and stomach issues. I believed the hyzentra would be my saving grace because it seemed to be amazing at first(well as amazing as 4 needles in your legs/stomach can be) but anyways. Just wondering if anyone has ever out of the blue became allergic to hyzentra? They are thinking I may actually be allergic to the proteins which would mean all Igg products(like really my body hates me) but I also have been refered to a rhematologist for autoimmune issues. I am wondering also if anyone with autoimmune diseases have had negative reactions to Igg products, maybe if the autoimmune is in check I will be able to continue my Igg therapy? I am going to both my immunologist and rhemotologist on Monday to figure things out but just curious if anyone has been in the same boat. Thanks for reading my post and I would love to hear from you all. -Taylor

JenniferLeigh
JenniferLeigh
I am very hypersensitive to everything having cvid. Different batches lot numbers give different reaction. 60 percent plus of cvid patients have autoimmune also! I live on benadrul
Lexi7
Lexi7
I just posted a question about allergic reactions to subq. I have been on ig products for almost a decade and just started having facial/tongue swelling from Hizentra. I'm actually wondering if my reaction is from the 60ml syringes, as I have numerous allergies and sensitivites and my reaction is starting before I really have any ig in me and I've noticed a very strong odor when I open syringe package
L-A
L-A
Yes...I too have been hospitalized several times with assymtamatic meningitis from IVIG's that were given to me so slowly (over 9 hours in the hospital) my body just pushes them away and within 24 hours I get meningitis symptoms (without it truly being that) but requiring a 3-4 day hospital stay. So finally Dr's said lets try HyQvia at home. There have been no reported side effects like that. Sure enough...the second time I ended up in the hospital with assymtamatic meningitis again. So now...very concerned as Dr's will not give them to me. I can get the once a month Nucala shot (Biomedics) and Pray! The worst part is I have become immune to all antibiotics...actually had to leave the country last year for a treatment not offered yet in US to kill a bacteria infection that my body could not fight after 8 weeks on a pic line.
L-A
L-A
Ooops. so sorry. Just realized this was on Hyzentra issues. I don't believe I have tried that one. Is that like the at home Hyqvia (needles in the abdomen)?