I have a rare form of hemolytic anemia, cold agglutinin disease (CAD). My CAD is believed to be primary, meaning an underlying cause cannot be found. With that said, when I had the original testing, they did find I had mycoplasma pneumonia at one point. They felt at the time that CAD was secondary due to it. It’s been 2 years now and CAD hasn’t subsided.
I see my hematologist once every 3 months with a lab in between for a simple complete blood count to monitor my hemoglobin (HGB). When I see my doctor, he does a lot of blood tests. I typically have the same results, which are indicative of hemolysis, every time.
My CAD titer is the one I keep my eye on. Almost a year and a half ago, my titer was the highest it had ever been at 1:1024; every few months it has dropped twofold. Three months ago, when it was last tested, I was down to 1:128.
Since I was diagnosed in 2020, it has never been that low. Since the CAD titer detects antibodies that agglutinate red blood cells in cold temperatures and mine is going down, would that mean that my CAD is subsiding? I should also note that my bilirubin has also dropped to the lowest it has been in 2 years, to 2.9.
I have mentioned in the past that I was extremely sick the February right before COVID-19 ran rampant across the world. I was diagnosed 7 months later. It makes me wonder if you can have low-grade CAD without knowing it until a sickness kicks it into a full-blown mode.
Read about the differential diagnosis of CAD
There are a growing number of studies showing COVID-19 as a trigger for CAD, as well as other autoimmune diseases. When I look at my timeline, I got sick in February. I can’t be sure it was COVID because the pandemic had just begun in the US. I was diagnosed in September after becoming incredibly weak. I started to get better each month thereafter even though we were in the fall with winter fast approaching. With CAD, these would be the months that make your blood agglutinate and subsequently make you feel sick, but I didn’t. Then I had the vaccines in March, and I started to have CAD symptoms again.
This brings us to November, when I caught COVID-19. Luckily, I had the monoclonal antibodies which stopped hemolysis for a while and made COVID-19 manageable at home. It took a solid 5 weeks for it to completely subside, except I still have issues with taste and smell. I noticed that anytime I take an antibiotic or certain over-the-counter medications, my HGB is affected.
This was 10 months ago. I haven’t been sick. I wear a mask everywhere I go just for safety. I only take folic acid and acetaminophen if I get a headache. I exercise and eat healthily—everything and anything that supports the production of red blood cells and bolsters my immunity.
I am looking forward to my next CAD titer results. If it is still going down, it should be 1:128 as this has been the pattern for me. When it goes down two-fold it maintains it for 6 months before dropping two-fold again.
Here lies the challenge: the weather is changing and with the cold weather comes cold and flu, not to mention COVID-19 still lingers. I must stay warm enough, so I do not trigger the antibodies that cause agglutination. At the same time, it is essential to not catch anything.
This will be a challenging year for me. As I said, I was diagnosed with COVID-19 when I worked from home the entire time. If I went out it was because I chose to and not because work required doing so. Now that we are back to our new normal it’s time to get back out there. This raises some big concerns for me especially since the Farmer’s Almanac is predicting one of the coldest years we have seen in the Northeast.
I do not want to lose the progress I have made this past year. Without vaccines, boosters, allergy exasperations, antibiotics, and colds, I seem to be moving in the right direction. Wish as I might only time will tell if my CAD is primary or secondary.