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.
Well it has been a long go for the past 5 years after diagnosis, but once started on the proper med and now a year past, things look much brighter. Yes one full year on the right med is really helping . I had a port placed in July and that has really made things easier as well . No more pokes which took hours to get set up; now its just one and done . Colds bronchitis, pneumonias are far less and all infections improved over last year. I did have a bout of shingles that affected my eye, forhead and scalp ( ouch ) but overall there is much improvement .
I still get a little blauish after infusions followed by "I'm super great"followed "yuk" time for turbo boost but I have no doubt this is worth it now. Yes it took time ; it was a rough go , but like others mentioned here; give it a year.
Hope to find you all charged up for the holiday season ; my next infusion will not be until after the New Year so I may be a bit grumpy starting off the new year but the week after that lol watch for fireworks in your local area . I will happy as can be .
Keep well ; remember you are not alone and We Are ZEBRA STRONG !!
Is shingles common with cvid , have any of you had that ? Unfortunate that we can not take a live virus vaccination .
treatment a few years ago and am doing 'ok') So it was helpful to see that this is working for you.
I read that some people take steroids? before treatment, I know benadryal is common and
others have other meds. Do you take any of these for side affects. I try to take as few pres
as possible. I don't know if shingles is common with CVID. I do know one person who used
to get very serious outbreaks and he had autoimmune problems. I had a virus/respiratory
throat infection for 3 weeks which is just now ending. During that time, I broke out with some
sort of hives or rash all over my stomach. I think that was in reaction to the cough medication.
take care.
Stay strong Zebras!
Yes I take tylenol and Benadryl as premeds . A low infusion rate helps a lot with headaches as does lots of fluids prior to infusion and even post infusion.
Thanks ktscat.