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 to all
I was diagnosed with CVID this summer. I went in for my annual appointment with the Rheumatologist that I've seen for about 4 years (for undifferentiated poly arthritis...or they just don't know!) and since the Plaquenil I have used for that time seemed to not be working any longer he decided to do some additional testing and found my IGG and IGM levels subnormal and my IGA level low normal...
| Immunoglobulin A | 85 | 81-463 mg/dL |
| Immunoglobulin G | 493 | 694-1618 mg/dL |
| Immunoglobulin M | 42 | 48-271 mg/dL |
so they did the titers for pnemonia and hib and both came back very low. Then they did the pnemovax challenge and I did not respond well it that...I think 9 of 12 or 13 had little or no response. Next HIB challenge, which I DID respond to and also had a very small increase in my IG numbers, though still out of range for G&M and 91 for A.
As a child and teen I was ALWAYS sick...so much so that my siblings called me a hypochondriac and I believe my mom thought so as well. As a very small child I had numerous kidney infections but at age 4 they did some testing, ruled out anything "significant" and they just seemed to go away. Then except for a case of pnemonia at 17 and ear infections at 18 (which they took my tonsils out and the ear infections stopped!) there was never anything major...just colds, sore throats etc. In my thirties I started having symptoms of autoimmune disease...hashimotos, premature ovarian failure, some type of inflammatory arthritis..but nothing for diagnosed until my late 30's and early 40's with the arthritis diagnosis coming at 55. Now, at 59, they have found it is CVID...but I am not having lots of infections though I do have several auto immune issues as mentioned before.
This is such a mixed bag! I am glad to know that it is not all in my head. For the last 20 years it has always seemed to be one thing after another...and a lot of it was doctors trying to figure out what WAS my problem (if they didn't just tell me I needed an antidepressant!). I do have an excellent functional medicine doctor and he has look at all kinds of possibilities. Was it chronic fatigue (yes, I AM chronically fatigued, my BIGGEST complaint, but it is not CFS), fibromyalgia (ruled out), adrenal issues (my numbers on that were also way low)? He told me years ago that when he heard hoofbeats he did not think of zebras but horses (not one of our finer communications!)! I told him he'd best learn the I AM A ZEBRA! That was even before the CVID diagnoses! I guess now I am a UNICORN!!!!
So, at this point I am glad to know WHAT I have but it really makes little difference. Since I am not ill with infections we have decided not to treat with gamma globulin at this time. I know it would help with the fatigue but have heard different views on whether it helps with joint pain (my two main complaints) and I am not sure the expense and the potential side effects I keep reading about are worth it.
I am wondering though if anyone else without infections but autoimmune issues has ever gone ahead and done the gamma globulin infusions and if it was worth it?
Thanks for letting me ramble and I really hope to hear some opinions!
Mary Anne