Ok now I am super confused. I thought you have to have antibodies to IgA - which a simple blood test can tell you, before you had anaphylactic shock. So essentially you can have an IgA of 2 but if you don't have the antibodies you won't have anaphylactic shock from it. I have IgA also less than 25 but tested negative for antibodies to it so essentially I can use whatever product and it won't matter. I personally chose something with a low IgA content to see IF it helped my side effects.

Oh, I guess I should have said more clearly that you can build up antibodies over time to IgA if you have low IgA and you keep getting a high-IgA drug, you would be at the risk of anaphylaxis--at least, that's how I understood it...

Oh! I just remembered another thing...

Remember all my posts about the innate immune system? Whether things like not swelling from injuries, low-body temp, diminished pain levels are related to CVID, and his response is YES! They don't know why though, or how it interacts with your Ig levels though.

Also, not every CVID patient would experience that...apparently being slow-healing is another common thing they see.

I think he's going to try to identify exactly what disease I have since CVID is a blanket diagnosis that covers many diseases.

When my levels were first tested, my IgA was 7. And I am on Gammagard Immune Globulin 10%. I haven't had any bad reactions to this IVIG, and I've been getting it almost a year. So, is there another component to this equation that I should have info on? I'm very confused.

I would think that Gammaguard would be a good one for you to be on, Midge...I mean, 7 is awfully low, and that's what he recommended for people with low IgA. If it's under 6, he said they think of that as 0. I think that's just the lowest the their test goes. I'm not sure what your IgA needs to be for them to justify gammaguard, but obviously your doctor did justify it, and it's working for you.

Really didn't mean to create confusion, sorry. :(

It was recommended to me to try a lower IgA product as I have low IgA to see if it helped lessen the side effects. I ended IVIG on Gamunex and it was awesome!

I thought Gammagard had NO IgA. If you have IgA antibodies I understood you must have one with NO IgA.

I'm not sure about whether gammaguard has IgA or not...I think it has a very small amount though.

PrincessB.....I just joined this group, and as I comb through the archives, I noticed you found a pediatric immunologist at Stanford who you were very happy with. I am writing to you in June of 2012, and I'm curious as to whether or not you would still recommend him. I hope this note finds you well. :)

princess & everyone else, thanks for all the info! i have an IgA of less than 4, i'm on Gammagard every 4 weeks, but getting changed to 3, as going 4 weeks this last time was horrible. i haven't had any reactions to mention for the IV, just a slight headache for a few days, this time tho, it doesn't seem to have helped. plus, in new england, the pollens been a bit high, so now i'm congested which doesn't help.
i thought the Gammagard didn't have any IgA either.

this all gets so confusing ~ i'd much rather have broke my arm or leg then have cvid.

Now I am confused and worried. I was on gamma guard sd ivig for 7 years. I was ok with the treatments but it was every 4weeks and I was sick at the end the last couple of years. I heard of sub q and asked their about it and he said hyzentra was the only one I could use since my Iga was practically nonesistent. My original dr retired and this one is young but I have drove down to nashville lots this year due to still staying sick often with sinus infections. He is happy with my levels and does not want me to take daily antibiotics went on vacation and came home with sinus drainage again. His comment last visit was I was over doing taking care of my mom and teaching special Ed. I posted here a few times before I had to stay with mom full time no Internet and I returned to work right befor Christmas. Mom passed the end of April and I have relaxed since school ended but still got sick on a relaxing vacation. I checked with IDF and there are drs in etown closer and in Louisvill about the same as Nashville but I am relunctant to change from ther it's in Vanderbilts ASAP clinic.

I looked up Iga levels for hyzentra. Less than or equal to 50 mcg/ml
Gammagaurd sd 2 .2 ug/ml. IV
Gammagaurd Sub q. 37 ug /ml
Looked up the mcg and ug and they are the same if same after the /

I Am going to discuss this with dr

Ok, ALL products have IgA in them. Gammaguard SD has very little but still has some.

@ Ky - your doctor should be treating YOU and not your levels. It doesn't matter if your levels are at 1500 if you are sick all the time. He should be taking BOTH into consideration. Also, Hizentra is NOT the only subq! I use Gammaguard subq and have done awesome on it. I have practically non-existent IgA as well :)

Unfortunately some inexperienced docs think you cannot use a product with IgA if you have low IgA (again all products contain this). The fear is anaphalactyic shock. This happens when you produce anti IgA antibodies. There is a special blood test for it and it is rare. That being said, the common belief among our group is you tend to have more reactions (headache, body aches, etc) with certain products if you have low IgA. I have personally found this to be true. A couple of products left me in agony and bed ridden for days :(

Ky I would call the IDF and get those lists of docs. The list they provide are not to just any old allergist but to docs who specialize in PIDD (Primary Immune Deficiency Diseases). Hope this helps!

Ok, ALL products have IgA in them. Gammaguard SD has very little but still has some.

@ Ky - your doctor should be treating YOU and not your levels. It doesn't matter if your levels are at 1500 if you are sick all the time. He should be taking BOTH into consideration. Also, Hizentra is NOT the only subq! I use Gammaguard subq and have done awesome on it. I have practically non-existent IgA as well :)

Unfortunately some inexperienced docs think you cannot use a product with IgA if you have low IgA (again all products contain this). The fear is anaphalactyic shock. This happens when you produce anti IgA antibodies. There is a special blood test for it and it is rare. That being said, the common belief among our group is you tend to have more reactions (headache, body aches, etc) with certain products if you have low IgA. I have personally found this to be true. A couple of products left me in agony and bed ridden for days :(

Ky I would call the IDF and get those lists of docs. The list they provide are not to just any old allergist but to docs who specialize in PIDD (Primary Immune Deficiency Diseases). Hope this helps!

Hi Thanks for posting this .
I have a question--what kinds of questions did he ask you . Did he ask questions about your skin

Thanks