Hello to everyone! I'm new to this forum and I just was diagnosed with hypogammaglobulinanemia. I had my first gamma globulin injection and haven't felt well since. I am not sure of the dose as I was not given much information from the doctor. I have been so sick for so long and am now somewhat relieved to at least know there is a name for what has been the cause of my many infections. I still have many questions and hope this forum will help. If anyone out there has this condition or knows anything about please let me know. Also if you know about the injections I would appreciate hearing from you. Are they suppose to make you sick? I have been nauseas and feeling bad since I got mine. Could this be a coincidence? Thanks! Joy

Hiya Joy!
As yourself, I am new to this forum, but not to hypogammaglobulinanemia, or in short: XLA.
I am 29 years old and was luckly diagnosed at the age of 2,
so XLA is a fact in my life ever since I remember myself.
I also have a masters degree in genetics and learnt quite a deal about my condition.
I would be happy to answer any question of yours based on my experience and study.
You (and any other hypogammaglobulinanemia patients) should feel free to contact me by mail or by the forum.

As for your question about the treatment:
It is called IV-Ig, IV stands for intravenous (=to the vein) and Ig stands for Immunoglobulines (=Antibodies).
It is not a drug, but rather a pure human body product extracted from thousands of blood donations (and that is way it is very expensive).
The bottles come with countless warnings of adverse effects but I wouldn't worry too much, it is written by lawyers, not by physicians.
I hardly had any side effects in the 27 years I am getting IV-Ig.
I do everything normally during and after the administration, including sports.
However, since it is your first times, do take it easy and listen to what your body tells you, you might get some side effect, but even those are usually mild.
Just remember, or minds do play tricks on us and many side effects are the product of emotional stress - I know this for a fact.
So, please just calm down.
If in the repeating treatments, the symptoms will reoccur, ask your doctor for a different brand og IV-Ig, as you may react to a specific brand.
This too is based on experience: the ONLY time I ever got a (mild) adverse effect was when I used the SANDOGLOBIN brand.
OMRIGGAM,CATTER and GAMMAGAURD where just fine for me.

Actually, you should even be happy, in a way, for getting IV-Ig.
It is super healthy for any person, and the same treatment is used as a immune system booster for people with a verity of illnesses starting from stepping on a dirty junky's niedle to autoimmune arthritis.
After you get the injection, you have the immunity comprised of thousands of individuals, each encountering different bacteria and viruses, hence, you are more immune than the common person.
However, this immunity rapidly fades away and by a month after injection, it is gone and you need to "refuel".

Don't worry,
trust me, it really isn't that bad
E.
dardamel@gmail.com

Hi Joy,

My name is Laura and I am 35. I was diagnosed beginning of September with Hypogamm also. I am waiting for my insurance's approval for the IVIG so that I can start the treatments. I am nervous and positive all at the same time. I have been told that I will feel like a new person. I have heard that it does make you nauseaus. I have also heard that it will go away as your body gets used to having IG's again. I would love to hear how you are feeling now. I need a pal with this disease so that we can compare notes. Please let me know how you are feeling.

Wow! I hadn't realized the numbers of people with this disease or that it was a life long disease. I am beginning to wonder if this is really what my son had. They said his 1 & 3 levels were low and after 2 years of oral antibiotics he seems to being doing fine, other than the occassional bouts of impetego. Do you think he really had hypogammaglobianemia?

Dont freak yourself out too much KiminNS..alot of kids have transient hypogammaglogulinemia...my immunologist told me most studies say by 5 years but some kids actually outgrow it by 12 years...so it is possible that your son was one of the lucky few who outgrew this....I hope we are so lucky!!!!!