Okay, so I saw my immuno on Thursday and he had all my labs back but he basically said they were inconclusive. $2000+ worth of tests and they were inconclusive, imagine that! He said I definitely have Selective IgA deficiency and probably Selective IgM deficiency. I have zero IgE so I'm not allergic, whatever that means. I have borderline Subclass IgG1 deficiency but not enough to automatically say I need IvIG. He says I have protection against tetanus (protein based) but no protection to Hib and only have protection to 2 of the 7 strains of pneumococal. He wants me to have the Hib vaccine again and in 4-6 weeks have another titer for it and the pneumococal since he revaccinated me 2 weeks ago with it. If I don't mount an antiobody to those then he said I could have Specific Antibody Disorder and then he might consider lumping everything together under CVID and might consider IVIG. He said right now he would just treat any infection agressively with antibiotics and that I might need to go on them prophylactically. Interestingly enough though, my WBC was 15.1 which he said indicated an infection somewhere, but he wasn't going to pursue it because I am on prednisone and we probably would not be able to find the infection in the first place. Also interesting was my neutrophil percent and neutrophil absolute were extremely high which indicates that the Sweet's syndrome is still active in my system despite the torturous months of steroids. Also, my ANA screen came back as positive with a homogenous pattern but a low titer of 1:40 so he said don't worry about it. From everything I have read, a positive homogenous pattern of ANA indicates Lupus, so how should I not worry about it??? Good news was my complement levels were fine and my IGG levels were good. The immuno said it may be a quality issue not a quantity issue for me but we just don't know right now. The other weird result was with the liver panel. My SGPT(ALT) was extremely high and the alkaline phosphatase was extremely low. He wants to redo that test in 6 weeks when we do the vaccine titers because that could be where the infection is hiding out or it could be the beginning of something going on with my liver. He tried to downplay it but I could tell he wasn't being completely truthful about it.
So basically he said I have 5 different disorders which he may be willing to lump together under CVID if I don't mount antibodies to the vaccines and then I MAY be able to have IVIG except that with a positive autoimmune response with IgA i would not be able to tolerate IVIG with high levels of IgA. So I really don't know much more than I did to begin with except that I am sick of being sick and he doesn't really have anyhting else to offer me. The only good thing that came of the visit was I was able to talk him into a compromise on the Prednisone and got it reduced from 10mg to 7.5 mg for 2 more weeks then drop to the 5mg instead of staying on 10mg for 2 more weeks. Any change in prednisone is positive where I'm concerned.
Anybody else out there with such a conglomeration of disorders?? I am so frustrated and exhausted and I feel like I am the one who is having to do all the work here; that the doctor is just spitting out numbers and then leaving it up to me to figure it all out. But I can't figure it all out and this having to wait around for more labs is killing me. I even have to find some place that has the Hib vaccine on my own because his office doesnt have it and neither does my GP. This is starting to border on ridiculous! SorryI'm ranting, I just need answers and they are not coming easily!!!

There are immune globulin products which are specially formulated for IgA autoimmune responses. I know that physicians love Prednisone and throw it at almost everything but...it is the cure that kills. Prednisone at high doses for long periods of time create diabetes, dissolve bone, and make people crazy. Just like steroid abuse you here about with athletes. I am a huge beliver in trying anything before steroids.

Gammagard S/D contains the lowest level of IgA.

[books.google.com]