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.
Hello, I am new to this group. I was diagnosed with CVID this year after 3 years of being sick (which began shortly after I had my daughter) The diagnoses came after 2 ENTS, 2 sinus surgeries and 3 Allergy Doctors. My IGG's were low and I had a poor response to the vaccine challenge. I was very thankful to have good insurance and start IVIG in April, it seemed to work at first but the last two months I have had sinus infections and antibiotics have not worked. I will be getting nasal cultures done next week but Dr's are really not sure what is going on with sinus's. SO i am left wondering if the IVIG is really working? Has anyone experienced relapse type symptoms? Is this a common thing?
Thank you -
Thank you -
-
My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
IVIG is just as variable as CVID. We are lucky to have it, there is no doubt about that, but everyone responds to it differently, and our response to treatment can change over time.
IVIG gives a a "Second Hand" Immune System...and like anyone else with their original Immune System, we are still subject to colds, sinus problems, GI issues etc...but, b/c our Immune Systems are 2nd hand, and we need to go shopping for a new one every 3-4 weeks or so, it does make it harder for us to kick things like the common cold to the curb.
You can trust that IVIG is doing its job, but us CVIDers are most prone to upper respiratory, sinus and GI issues...and they aren't easy to get rid of, and as pconn mentioned, IVIG can take a good year before you start feeling the full benefits.
You are doing the best you can...your Docs are taking cultures and monitoring the sinus problem. With any luck, they will find a clue that leads them to a good treatment for your recurring sinus issue.
Until then, don't underestimate the power of lots of fluids, plenty of rest, and making sure you get some Vitamin C, D, B Complex...but, do discuss which vitamins are best for you with your Dr first!
Hang in there, you will get through this,
LuLu
It's OK to get discouraged and to go into denial about CVID especially when IVIG doesn't exactly put a spring in your step or make you feel like the "Old You"
We pin very high hopes to IVIG, and some of us get immediate benefit, and then others, like myself, take much longer to feel like IVIG has finally kicked in.
You are not sounding ungrateful or like you are complaining when you question your DX and whether or not IVIG is really working. It is frustrating to be getting infusions and still get recurring infections, I mean, isn't the whole point of IVIG to prevent these things?
As mentioned, IVIG works differently for everyone...everyone has different antibody deficiencies...so far, IVIG can only replace IgG levels, but what if you are deficient in IgM or IgA. also?..things get more complex.
Feel free to vent, ask questions, read through old posts, start new posts, discuss your treatments (it's always good for us to know what treatment plans other Dr's use)..
You are most welcome here,
LuLu