2018 was a year of confusion, fear, uncertainty and frustration as I searched for a diagnosis that would explain what was causing a chronic cough, fatigue and enlarged lymph nodes. This search for answers led to:
1 surgery
1 laryngoscopy
1 mammogram
3 biopsies
4 ultrasounds
7 CT scans
19 doctor’s appointments
42 blood tests
After nearly a year of actively advocating for my own health, I finally have a diagnosis. On February 7th, 2019, I was diagnosed with a rare blood disease called IgG4-Related Disease.
What is IgG4-RD?
IgG4 is an antibody our body’s produce to protect us from antigens (toxins, bacteria, viruses, and chemicals). Sometimes, the body creates antibodies to fight against itself, mistakenly treating organs and tissue as foreign intruders that need to be destroyed. That’s what is happening in my case. My immune system is mistaking my organs, especially my lungs, as a foreign substance that shouldn’t be there. It is over-producing the antibody IgG4 to fight what it believes are antigens, but what are really my vital organs.
This autoimmune disease causes serious damage to any organ, which usually can’t be reversed. That’s why it’s important to get a correct diagnosis early and to begin treatment right away. I am lucky because I was diagnosed fairly early before too much damage was done. Many people are not so lucky.
What’s next?
The standard treatment is the steroid, prednisone. It is usually taken for 3 months and then tapered for 2 months. If the IgG4 levels are back in normal range after treatment, you are in remission, which on average can last up to 6 months. Unfortunately, steroids also have several adverse side effects. Rituxan is another drug that is being used to treat IgG4-RD. It’s a drug delivered through an IV infusion, doesn’t have the bad side effects, and results in longer remission. However, it’s very difficult to get your insurance provider to approve Rituxan. Luckily, I just found out I was approved for Rituxan and will have my first infusion on March 1st! Miracle!!