What is Hypogammaglobulinemia?

I've been sick as long as I can remember. Although I don't remember feeling ill as a child, as a young adult life kicked my butt. I was diagnosed at 25 after losing 70 percent of my hearing and 45 percent of my lung capacity. At 30 years old, I now infuse subcutaneous weekly and work as a full time clinical coordinator and a part time billing adjuster for an emergency department. I refuse to go down without a fight. Thank you to those who cared enough to research this invisible illness.

I've been having infusions every four weeks for 10 years and don't really get side effects anymore. If it goes in too fast I get a headache and a weird itchy chest pain. 21 grams in 350mls, over two hours works pretty well. The subcutaneous injections are awkward where I am. I'd have to have a nurse come to the house and it's just easier to come into town to the hospital. It's done in day surgery, so usually people are having an operation like cataract surgery, not sick people!

I have had hypogammaglobulinemia since 1991 and I was told If I did not take my these treatments I would not have lived to be 35. I took them for a while and started having problems with the gammaguard and quit taking it. Well, then I started getting repeated infections in my lungs and it had done so much damage to my lungs that I started taking it again to keep from destroying my lungs any further.

I take 35 mg IV every two weeks and have a doctor who premedicates me so there are no issues. I am on 3 liters of oxygen from the damage of not taking the treatment. So a word from the wise: make sure you take your treatments!

I have had hypogammaglobulinemia since I was a baby. It's been 20 years and I hate getting IV injections for six hours at a time every four weeks. Doesn't make me feel better afterwards. I usually feel terrible the next few days after getting treatment.

I was diagnosed with hypogammaglobulemia as a child. I was always sick. And they would always say I had allergies etc. Finally a very wise doctor figured it out. Anyhow, they told my mom I probably wouldn't live past 10 years. I started having gammaglobulin shots every Friday during the school year because I seemed to get sick mostly during school time, as a cold turned into bronchitis or pneumonia always.

I had shots at the doctor's office, the shot would come out of the fridge and bam! I was done for the week. I stopped having shots when I was a teenager in the 80's, because my doctor at the time was worried that I could get AIDS or something from the shots.

I still get sick mostly in the winter, and it almost always turns into bronchitis or something else. I usually am sick at least six to eight weeks. I don't usually start to get well until I convince my doctor to give me antibiotics, which they don't like to do nowadays.

I have a flu shot every year and I get a pneumonia shot every five years. I stay away from sick people, I wear gloves at the market, I wash my hands all the time, etc. I am now 46 and I have only had one winter since I stopped the shots at 16-17 years old, that I haven't been sick. One winter in 30 years, and that was two winters ago. But the following winter I made up for it because I was sick for almost three months.

Sorry this was so long, but everyone hang in there and there is hope and I guess a lot of advancement since those Friday shots all those years ago.

I was diagnosed with this a couple of months ago, and after seeing the results of the rest of my blood work, my neurologist is finally sending me to a hematologist. I have been making all sorts of excuses for why I am so lazy, but it is not laziness or depression or stress. It is this disease that I am just reading about.

I didn't think much of it until I found this web site. Now I am really fatigued. I have like, dozed off while driving and had fatigue. I don't have to apologize anymore - yay! That alone is helpful, and explains so much.

Question, though: Do any of you have a skin rash on your hands that comes and goes? After reading here, I am now assuming that it is an infection that just won't go away. Also, I have this awful pain in a couple of my fingers, and behind my knee. I have more pain elsewhere due to DDD, but this pain is the same in these three areas; like someone is twisting my nerves in my fingers and behind my knee. And, as one poster stated, my family is horrible to me. They know that I have been being tested for MS, am on social security disability from the DDD and Optic Neuritis, yet every time I don't show up to something or get aggravated that I know they think I am a hypochondriac, and I find it extremely disrespectful. I really just don't talk to any of them anymore. But now, maybe I should forward this site to them. Or maybe not.

Does anyone have any similar pain symptoms as I have? Also, I have been running a fever for several weeks - low grade - and they found a small enlarged lymph node on my neck last week. Could I actually get so sick as to cause lymphoma? Thank you!

I have a student whose husband has hypogammaglobulinemia and wants to know what foods would be appropriate for this disability. What can you share as to how I should approach this malady and help this family?

I am a registered nutritionist but have nothing in my medical and advanced clinical nutrition texts to address nutrition maintenance.

I am 39 and finally, after fighting this for years, I have been diagnosed with Hypogammaglobulinemia (CVID just today. I also have Mannose-binding protein deficiency. My doctor is telling me about the IV infusions that are done monthly or the one done weekly. He says we have to get approval from my insurance first. Does it hurt? Will it make me feel better?

I was diagnosed in 1983. Now I self infuse with subcuvia every week. It takes 2 1/2 hours but hey, life is for living. No worries. You rule your deficiency; don't let it rule you. Just stay positive minded.

I wasn't going to live past 18 months then, as I fought it, the doctors gave me to the age of 21. Ha. Were they wrong! I'm now 59 and have four kids and eight grandchildren and all are well. Live life to the full.

My problem is my family. I actually have given up on ever connecting with them as there are too many issues in the way. But they don't believe me or my apparent symptoms. My mother has narcissistic personality disorder, and if life doesn't revolve around her, she freaks. She has my father and three of my four brothers convinced I'm crazy. That's what narcissists do. If anything takes attention away from them, they connive, manipulate and lie to make you look like a bad person.

I am just headed to therapy to be helped with what she has done to me throughout my life, but I am disabled from other serious illnesses and mostly bed bound and live with her and my father. The stress of living with her has made all my illnesses worse. (look up daughters of narcissistic mothers online) I am moving out soon, but am so scared. I don't know how I am going to find an apartment, how to get someone to move my stuff, or how I am going to unpack. I have mobility issues, pain issues, balance issues, frequent falls so on and so on. How do I find the strength, where do I go for help, how do I find a future for myself?

I was finally diagnosed after suffering for more than 30 years. I get the IVIG infusion treatments every four weeks and have been doing this for over two years. I get them on Friday (at the outpatient infusion center for four or five hours), go home and stay in bed through Saturday and feel better on Sunday. While I am not 100 percent on Monday, I start bouncing back and feel good for the next four weeks. While it is not what I would like for my life, it works and has allowed me to have a life and a very busy and demanding career.

I have had blood infusions for six years. I feel tons better.

Can you get disability for this disease? I am finding I am off work more than I am working. I am waiting to see if my insurance covers the treatments but I am so tired and have a constant fever. Also, working in the medical field, I am exposed to everything! Is the social security process a difficult process for this disease?

My son started SubQ Ig and he gets it at home once a week. He doesn't need steroids or any other meds before or after the treatment. He's been on them for six weeks and is already healthier than he has been for 10 years. The treatment takes about an hour and a half and is a piece of cake compared to being sick all the time. He doesn't even mind it.

I have just been diagnosed as having the "hypo-goblin" disease as we have named it. It has certainly taken a toll on my body/finances (I have currently stood down as I work in a school) but due to waiting on other tests like a bone marrow biopsy and extra blood tests to find any other autoimmune diseases that may have caused this, my treatment won't begin for at least another four weeks.

I say, bring it! I am so glad I haven't been told my stomach infections are yet again "irritable bowel syndrome" or 'just in your head. You need to meditate."

I have been doing subcutaneous injections of Hizentra for over a year. I have experienced a year of almost no antibiotics or infections! It has been unreal. However, I am extremely fatigued most of the time. Is this normal for most of us with hypogammaglobulinemia?

I have three children: two boys a-gamma and one girl who is hypo-gamma. They all receive the four to five hour treatments every 28 days (four weeks).

My main problem is I can't seem to find info on the long-term for them. What kind of life span will they have and is it going to get worse with time? I know they used to put these children in those clean environments (bubbles) but thank god that's not what's done now, but my kids still stay sick monthly. For the most part, it's diarrhea, vomiting, viral infections, asthma and middle ear infections. The boys have ports but they did not diagnose my girl until she was five and she's always got breathing problems.

Are there other things I can do to boost their immune systems, like foods, certain supplements, etc.?

My husband has hypogammaglobulinemia for over five years. He used to sit at the infusion center for hours. Now he has found a doctor so he can administer the IVIG at home. It has worked out great. He is not exposed to all the other sick people at the doctors office or iv center. Once you start the therapy at home you will wish you had done it sooner. Good luck and god bless.

I have been receiving treatments since April and it has helped with my infection levels. I used to end up in the hospital every other month - no lie - since I started in April I have only been in the hospital twice. They had a hard time getting veins with me, so on my last round of home IV antibiotics I requested a Smart Port be installed. It is great! One stick and it is done.

It is under the skin on my chest and it can be accessed by the infusion center, hospital staff and labs for blood draws or medication administration. It can be left in indefinitely and it only took about an hour in the doctor's office to have it put in.

@anon156284: I've had the same problem, but presented my evidence of testing (ongoing) and records proving my illnesses, they (my professors)had an option to grade my work and testing despite my chronic absences. Each professor worked with me accordingly.

However, make sure you know your last day to drop the classes. The illnesses and fatigue may not allow you to perform your best on a full time schedule, but maybe drop a couple so that you can keep your focus and your grades up!

They don't even know what is wrong with me yet. My first blood tests show low IgE, low IgA, and low IgM. All else looks normal and skin allergy testing is negative while an immediate histamine response is positive. Any ideas would be much appreciated!

Their is another alternative that is not quite as intrusive. You can be trained to self administer a subcutaneous version. This means you insert small needles into yourself weekly and spend two hours at home hooked up to a small pump. Although this does not sound very appealing, the alternative is not attend my classes, or work full time.

I refuse to give up having a life so I prefer this route. If you suffer from a PIDD then I personally recommend discussing this with your doctor.

I have treatment very three weeks. It starts off at six hours but over a few months reduces as your body gets used to the infusion. I now travel an hour into the city, get hooked up to a machine for 1hour 40 minutes, then travel home again.

I was ill for 32 years (from 4 years old), every day I heard myself saying, "i don't feel well". I won't go into all the problems.

The illness and the treatment is life long and depending on the level of illness you will be put on the infusion. You can opt out but I recommend taking it. I still feel tiered but I have not been ill for months, it feels great.

I am now fighting for disability payments, they don't recognize the illness. It is really hard.

elizabeth 2: It's not an injection. It's 4-5 hours hooked up to an IV with the chance of adverse reactions. To prevent reactions they give you steroids and benadryl. Oh boy. Doesn't that sound like fun. Yippie

I wish someone would explain this to my school. They say they don't discriminate against anyone with a physical disability.

But they will not accommodate the idea that I have Hypogammaglobulinemia and cannot control the fact that I get sick a lot and can't fight of surface bacteria. They fail me in my college courses when I miss four classes. I have F's on my transcripts and I have to chance it every semester paying for the class and trying my best to not miss too many. How does one fight a University on this?

Any problem with the immune system can be very dangerous. While the hypogammaglobulinemia treatment doesn't sound desirable -- I sure wouldn't want to have to get injections every three to four weeks for the rest of my life -- it is a lot better than suffering from the disease.

We owe a lot to the amazing people who discover treatments for all of the horrible diseases out there!