What Are Immune Deficiencies?
According to the Immune Deficiency Foundation, immune deficiencies are rare, chronic conditions that affect your ability to fight off infections. Researchers have found genetic links for some of them, but no one really knows why they happen. There are over 350 of these rare immune deficiencies. Some affect only one part of the immune system and others affect more parts. They are all known as Primary Immunodeficiency Disorders or PI for short.
Our immune system is a complicated group of organs and cells that primarily fight off infections. However, it also plays a role in allergic reactions, and the development of cancers. A healthy immune system, helps us fight off infections, and helps prevent cancers from growing. If our immune systems are working like they should, we won’t be bothered with allergies, or diseases where our bodies are attacking their own tissues. Those are called autoimmune diseases. For example, rheumatoid arthritis.
Primary Immune Deficiencies or PI occur in one out of every 25,000-50,000 people worldwide. Of these cases Common Variable Immune Deficiency (CVID), is the most common. The cause of PI’s is believed to have a genetic component, but researchers still don’t know what causes most cases of CVID.
Do I Have A Primary Immune Deficiency?
The Immune Deficiency Foundation has a list of clues to help you figure out if you need tested for PI. It includes:
- Severe infections that require being in the hospital and/or needing IV antibiotics.
2. Infections that are difficult to clear up.
3. Infections caused by unusual organisms.
4. Infections like pneumonia that keep coming back.
5. Others in your family get frequent infections too.
My Immune Deficiency Story
After a year of bronchitis, asthma exacerbations, pneumonia, and 4 hospital stays in 2010-2011, I was referred to an allergy and immunology doctor for testing. My test was to get two vaccines: a pneumonia shot and a tetanus shot. I think it was eight weeks later when I had blood titer lab work done. This tells how much, and if your body responded to the vaccine with an immunity response. It measures how many immunoglobulins or antibodies you’ve made to the vaccine. I made antibodies to the tetanus shot, but not to the pneumonia shot. I had no response at all, like I never received the vaccine.
My doctor told me I had an IGG subtype 2 deficiency. My total white blood cell count was also lower than it should have been. I also had allergies. This gave me a diagnosis of CVID. The only treatment for PIs is infusions of other people’s immune proteins, called immunoglobulins (IG). In severe cases that affect white blood cells, red blood cells, and platelets, they may try to do a stem cell transplant.
Also, according to the Mayo Clinic, it’s really important to have good hygiene, and avoid people who are sick with colds or flu. Any infections need aggressive treatment to prevent permanent damage to your organs.
Ways To Take Immunoglobulin Therapy: IV Infusions
So I was started on an every month IV infusion of these immunoglobulins. From 2011 to 2013, I went to an Infusion Center in my local hospital once a month. They put in an IV, and gave a dose of IV Benadryl (an antihistamine). I had to wait for an hour after that before my infusion started, because allergic reactions are common with IVIG infusions.
Immunoglobulins have to be infused slowly, so this infusion usually took about 4 hours to complete. Some people need to have it infused even more slowly than that.
Important To Know
If you need this therapy, be very cautious if they need to switch you to a different brand of IG. In the spring of 2013, my hospital could no longer get the glass bottles that my brand of IG needed to be diluted in. They switched me to a different product in a plastic bag. Within the first four infusion attempts, I got increasingly more severe and rapid allergic symptoms. Uncontrolled coughing, and hives happened within seconds of my last infusion.
IVIG products are not all the same! Be vigilant in reporting any new or worsening symptoms if you have to change which product you use.
Subcutaneous IG Infusions
At this point, my immunologist didn’t feel comfortable trying another product, so he sent me to a larger city-hospital doctor. By this point I was unable to work. I hadn’t gotten a full dose for 4 months, and was constantly sick with respiratory infections that wouldn’t clear up.
Since I wasn’t able to work, I lost my insurance. IG therapy is insanely expensive, like $12,000 per dose if you self-pay. Because of this insurance mess, I didn’t restart IG therapy until April of 2014.
My new immunologist wanted me to try subcutaneous infusions, because they have way fewer bad reactions than IV therapy does. This is where your dose is divided into 30mL portions, and however many needles it takes to infuse all of the dose. I currently use a dose that takes 4 small subcutaneous (SC) needles to infuse. I insert the needles in my belly fat. I do this every ten days, and it takes me about 2 hours from start to finish. You can watch this video if you want more information: Hizentra Training Video
SCIG therapy has been awesome at keeping me from needing hospital stays due to infections. My general doctor helps me to manage any infections that do happen so I don’t need to go to the hospital. I have even received IV antibiotics in his office, but thankfully not recently.
I’ve also learned to be proactive when I start to get ill. I no longer wait until my asthma is out of control before I seek medical help.
Do I wish that I didn’t have to stab myself with needles every ten days? Every time I have to do an infusion I say to myself, “I hate this!”, but then I do it anyway. That’s just how it is.
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