I was diagnosided with CVID after 10 years of wandering the medical wasteland.
I start my first IVIG this week and would like to talk with others who are doing this.

I live in the Philadelphia area and have found one other person locally with CVID who has been on IVIG for past 10 years.

I'm curious about other people's experiences-- potential side effects and whether I will have fewer infections.

Thanks, Gail

In August of 2005 I celebrated (NOT) my twentieth year of getting IVIG every 4 weeks. I was undiagnosed for many sickly years, too.

The IVIG causes me to have anaphalaxic (sp) reaction unless I get one brand: Gammagard SD. It is low in IgA antibodies, so I have no reaction.

When it was recalled in 1993 for possible contamination with Hep C, I was tested--tested positive. After mega doses of Interferon i was cleared of HCV.

Tell the nurse if you feel weird in any way. Do not wait. Tell exactly what you feel.

Best wishes to you!
Lori

I have just been diagnosed with CVID recently and have not yet had my first IVIG, I know very little about the illness or the treatment other than what I have read on the net in the medical reports, and it all seems quite scary. I would really like to have some information from others who actually have experienced the treatments and are familiar with the illness. thanks so much Susan

I had a allergic reaction to one brand of ivig, but i take gammunex and have some side effects. I get a really bad headache. Prednisone after the infusion for 4 days really helps. My mother takes the infusions and have no problems at all. My son takes them and has the same side effects as myself. It is very individual. Because I have side effects, I get the infusion very slowly over 4-6 hours. Good luck.
Rhonda

Hi,
I was diagnosed last year and have been getting the IVIG treatments every month for 14 months. I have not had any side effects and I have had only 3 sinus infections since I started the treatment. Before that I had a continouos infection that would drive the doctors crazy trying to figure it out. I honsetly thought they were grasping for straws when they tested my immune system since I was 48 years old and had been healthy up to the point that I had a root canal that caused an abscess in my sinus and from that point on and 3 sinus surgeries and osteomilitis in my face I always had an infection, even while I was on antibiotics it would go out of control and I would have to go to the emergency room for IV antibiotics.
Now the military doctors are convinced I can go off the IVIG since they have never had a patient with CVID and I am terrified of what could happen. Has anyone ever been told that it is a temporary condition? I was told by my civilian doctor in the states that it was for life. I live in Germany.
I am interested if anyone has ever tried stopping the IVIG treatment.

Thanks,
Jo