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.
good luck and feel better soon!
Their approach was that we get acquired immunity from the IG therapy we receive and there is no need and no benefit from additional vaccinations. If you haven't built immunity from your previous vaccinations, there is no reason why the additional ones would work.
That opinion was from two prominent immunologists, Dr. Jordan Orange, the chairman of the AAAAI Primary Immunology Committee and Dr. Mel Berger, who is now the senior clinical director at CSL Behring.
You might want to have your immunologist do a peer consultation through the IDF with an other expert immunologist.
In any event, enjoy your trip. My then 15 year old daughter was going to China with her high school Chinese class for three weeks at the time. As part of the trip they were going into some very rural areas and that's why we were concerned about vaccinations. She was not yet on regular IG therapy, but did have specific antibody deficiencies. We gave her two infusions before she left and one when she returned. She is now on weekly subQ as she was later diagnosed with CVID.
She is now at college and instead of getting additional vaccinations, a requirement for living in a dorm, Dr. Orange simply wrote a letter saying she was on regular IG therapy and that gave her the required immunity. It also sufficed for the vaccination requirements for the nursing school.
My levels are good. My doctor has me getting infusions every three weeks because the gammagard S/D low IgA has a 21 day half life. I know that my body is at least trying to work because this is how I would feel before IVIG when I went from being a little sick (day to day sick) to going to the Dr.'s office and needing high powered drugs.
My nurse should be here soon so I am going to get off for now and rest until she arrives.
Marilyn .