The winter months are particularly tough for a cold agglutinin disease (CAD) patient. The wintry weather is really hard on the body. It is not just the aching joints but the hemolysis that comes with getting cold that affects all our organs. Our bodies need to work harder to pump the clumping of our blood, our kidneys work harder to flush out dead red blood cells, and all the while our bone marrow is in a constant state of replenishment.
For now, I have a reprieve since it is spring, and I have many months to go before I must deal with the harsh reality of the cold months. It is an important topic for me to discuss because the decisions I need to make now will affect how hard winter will be.
I just recently had my last hematologist appointment. The past few appointments have been every 3 months with a lab workup in between. I am just recently being monitored. My hemoglobin (HGB) was 10.3 this past appointment with lab results that record the usual high/low levels that come with this disease.
As I discussed the different symptoms I have been experiencing in the past few months, my doctor recommended I start rituximab. Again, I am at a crossroads. My HGB has been hovering in the 10s but for whatever reason, in the past few months, I have been experiencing CAD symptoms. I know these will never go away and I will always experience some level of hemolysis.
My greatest concern now, and since I was diagnosed during the pandemic, is COVID. It still remains front and center. This is the big one I need to avoid. I had COVID last November and at the time I was given the monoclonal antibodies. My doctor tested my COVID antibodies, as I needed to know if it was time for my booster. The test revealed that I am positive for antibodies with the SARS-CoV-2 IgG II. My titer is great, and I have had an excellent response to the vaccine.
Read about experimental therapies for CAD
At least in the US, CAD tends to create a year-round reaction, with winter being the hardest. Winter is when I typically catch a cold, or a sinus infection and the myriad of other CAD symptoms reveal themselves. My concern is if I begin rituximab and I run through the 4 cycles that will take me into the end of July. This treatment will lower my immunity greatly and can blunt or eliminate my immune response to infection. With or without an effective response to CAD, I will still run the risk of getting an infection. I can get any type of infection that my body may have a tough time fighting after treatment for up to 9-12 months.
COVID is not likely to go away and as we move closer to fall, it is expected that the US will have a huge wave of new infections due to the waning of the COVID vaccine response. Even if my immunity was only taken down for 6 months it still puts me at risk during the predicted uptick months to January or beyond. So again, I am stuck in analysis paralysis, it is a hard decision to make.
I completely understand my hematologist’s concerns, especially since I have had weird CAD symptoms on and off for the past couple of months. It must be so frustrating for him. I am sure he is screaming in his head, “just take it!”
However, I am not convinced it is time yet. I need to protect myself from COVID and the winter. This I will not be able to do if we start treatment now, I just cannot take the chance of lowering my immunity with only a couple of months before the expected rise in infections combined with winter. So, for now, we sit in stalemate, with my HGB at 10.3; I feel this is the best choice.