IgA Deficiency Support Group
Selective immunoglobulin A (IgA) deficiency is a relatively mild genetic immunodeficiency. People with this deficiency lack immunoglobulin A (IgA), a type of antibody that protects against infections of the mucous membranes lining the mouth, airways, and digestive tract. It is the most common of the primary antibody deficiencies.
This is an instructive post for those of you with an IGA deficiency that don't know what to do. I'm an older guy, and all my life have had recurrent respiratory infections, sore throat, virus, gram negative bacterial infections, swollen glands, and easily get sick with an average of four to six weeks between illnesses. When I got sick -- it came on fast -- in a matter of hours -- and before I started aggressive meds -- I would stay sick for weeks vs. days. When an immunologist first diagnosed the deficiency -- he recommended having antibiotics on hand ahead of time so I could take them whenever something started. That did change my life in the sense I could usually either stop something, or I would cut the severity substantially, as well as a "full" recovery time to a couple of weeks. I still got sick. But, now I had some control over it. It was a big difference. Of course -- I'm 70 now, and paid a price. The meds damaged my colon over time - and that will require surgery. However . . . there's good news at the end of the tunnel. I eventually had another condition that required me to see another immunologist -- and after treating me for several months and seeing I was always sick -- she recommended gamma globulin infusions (you do it yourself after a little training, and it's easy and almost totally painless). She said it could "change my life". Well . . . I wasn't real excited about infusions -- but decided to give it a try. I did it for a month, saw zero results -- and quit. I told her, and she said I needed to give it time. At least four months. And so, after some more discussion, I decided to give it a serious try. The amazing thing was . . . after two months with no illness . . . and now six months with no illness -- she was right -- it's changed my life! It's hard to believe that people (me especially) don't get sick all the time. It's an amazing change in my life -- and I'm blown away that nobody ever suggested it before. Of course -- getting approved for the gammaguard took about four months. But, I have an amazing doc -- and she pushed it through. I will be grateful all my life -- because it is awesome not being sick all the time. And FYI -- I've had zero reactions to the gammaguard, zero problems, and while it does take a full 30 minutes for the infusion time -- I do it twice a week -- and it works. Maybe it would work for you? Certainly -- worth looking into.
It IS a big deal for me though and I have so many medical problems. Are you only IGA defecient or are you defeceint in other immunoglobulins as well? And how did you find a good doctor??
I also have very low igA level (since a child) and unexplained symptoms, I always had minor GI issues but not so bad it really effected me too much, then last August I started getting arthritis in my feet and now I have back pain, bouts of mouth ulcers etc.
I was referred to a consultant on basis of suspected SLE but I never thought that was the case and they just said "you don't have SLE", hmm great yeah that helps, that is what they get paid 150-200K a year for?!.
I don't get some of the 'classic' symptoms that most websites list though, I am quite resistant to colds etc. maybe not more than normal but not worse I don't think, so suspect my igG levels are good/normal.
Sadly this means I probably don't have a hope in hell of getting any ivig treatment until I am falling apart which seems to be slowly happening, despite good diet and looking after myself.
I may try going milk/gluten free again, I tried it for a while and the mouth ulcers disappeared but now they are back since I started eating a bit (not much!), nothing else changed though.
I am trying LDN at the moment but 3 weeks in and so far nothing of note..