My cold agglutinin disease (CAD) diagnosis was only the beginning of learning how to deal with this disease. And I spent the better part of a year and a half trying to figure it out as I went along.
When I was initially diagnosed with CAD, Rituxan was the first line of treatment, which triggered some serious side effects. And the advice my hematologist gave me was to avoid cold exposure and be very careful not to get sick.
As I began to make lifestyle changes, I soon realized that it is not just about cold avoidance; this disease requires a complete lifestyle change. I initially thought perhaps I needed to move to a warmer climate, and I soon learned from other CAD patients that did choose to move that air conditioning exacerbates cold agglutinin.
This was an important lesson I learned. I assumed in the warmer months I would be fine, but I found I couldn’t keep my body temperature stable. At night when I slept with the air conditioning, I would start to sweat, then I would throw the covers off and freeze. This back and forth resulted in constant hemolysis. When I’d awaken my urine would be dark orange, which is a sure sign that I was hemolyzing. I had struggled with this all summer long, which resulted in low Hgb.
Read more about CAD symptoms
Fall had its own set of challenges. The temperature was up and down all season long. I wasn’t being mindful of the changes in weather and again it resulted in low Hgb. It’s the slightest change in temperature; for instance, you’re standing in the sun, so you feel warm, but you feel the cool breeze.
Cold avoidance is very difficult. It’s not just about the environment but also not consuming anything cold. As I learned, when you do, it burns your tongue and throat and now you are cold from the inside. You must avoid ice cream, ice cubes, and all cold food and drink in general. To accommodate this new disease, I need to place my food and drinks on the counter to reach room temperature. I enjoy smoothies. The fruits I choose are high in antioxidants, which I feel are beneficial, but I can’t just eat them. I place all the ingredients in a cup, including the juice, and wait for it to warm up. It’s incredibly inconvenient but this is what I now need to do.
Staying warm has many challenges as well. I typically wear layers so I can remove and add as needed. I found wearing a hat is helpful to keep the heat in, but it can also make you sweat. Sometimes I will get cold and not realize it. My body will overcompensate and start to warm me up but through this process, I begin to sweat, and the moisture makes me cold and thus hemolysis begins. When it comes to cold avoidance, the most difficult part is figuring out the temperature that will not trigger the hemolysis process.
Read more about therapies for CAD
I thought dealing with the temperature was difficult but then I got sick. In the late fall, I came down with heavy congestion in my head and ears that would not clear up. I followed up with my doctor to find that I had a sinus infection. According to GoodRX, “The recommended choices are amoxicillin or amoxicillin/potassium clavulanate (Augmentin).” Unfortunately, I have an allergy to the penicillin family. I present with a red rash that is so itchy I break the capillaries. I have had chronic sinusitis for many years, and the antibiotic that I can tolerate is Cephalexin. It works well, and this is what I am usually prescribed.
What I didn’t know was that Cephalexin is on the list of drugs that cause hemolysis. I found that some drugs can cause drug-induced immune hemolytic anemia (DIIHA). This type of hemolytic anemia will subside when the drug is stopped.
After I completed my course of antibiotics, I had my next lab appointment and my Hgb dropped down to low 9’s and then subsequently went back up after a couple of weeks.
What I found most interesting; is the new layer of avoidance I was unaware of. There are many drugs that one would need to avoid, Medlineplus.gov has a full list, and here I share a few. Cephalosporins type of antibiotic, NSAIDS (nonsteroidal anti-inflammatory drugs), and Penicillin.
All this time I have been exasperating my condition by taking ibuprofen for my CAD headaches and Cephalexin for infections, just to name a few. My condition is not just about my immune system tagging red blood cells for destruction, but it’s also about the effects of this process. My spleen is slightly enlarged, I am jaundiced, and the cold agglutinins that bind together and clump up my blood, make my heart pump harder. This process is taxing on my organs.
I wish I was armed with more information from the very beginning. These include, what avoiding the cold truly meant, that certain drugs are harmful, and many other factors that contribute to my constant hemolysis. In hindsight, that information is as important as the diagnosis itself.