What I love about the medical field is that there is this nonstop effort to find cures, or even go back to the basics and see if there is something in their arsenal that once was believed would not work, but should be revisited now. It is because they take a chance that they find in some instances certain medications can work for some; this perseverance is what makes a difference even if it helps just one of their patients.
During my second appointment with my hematologist, we began discussing treatment options for my cold agglutinin disease (CAD). At the time, my hemoglobin was in the 8s and considered low and concerning. My symptoms felt near debilitating levels. I have since learned the signs of my sinking hemoglobin level and how to manage it most of the time.
My doctor immediately wanted to try rituximab, plus bendamustine treatment, to ensure a higher success rate. As soon as he explained that bendamustine was chemotherapy, I immediately stopped him. All the scans and tests done showed that I did not have underlying cancer or anything else for that matter. Yes, the pharmaceutical cocktail has a successful response rate of 71%, with an even higher complete sustained remission rate of 40%.
While these are impressive numbers, they still made me pause. I have had too many family members and friends that have had cancer and required chemotherapy, and yes it worked for some of them, but some had terrible adverse effects and tissue damage. I absolutely advocate for the right treatment for all of us, but it felt too extreme for me at that moment.
I chose a wait-and-see approach, which surprised my doctor and, so far, it has worked, I have maintained a 10+ hemoglobin level for quite some time with only a few exceptions, such as changing seasons, getting sick, and not knowing that certain medicines can lower your level. These lessons have taught me to be ultracareful.
Read more about how CAD is diagnosed
Even though things are bright at the moment, I am aware that things can change in a moment, and because of this I still seek a new treatment, but one that is less invasive. In that second meeting with my doctor, we had discussed different treatments. I brought up steroids and he immediately struck it down since, he said, it has not proven helpful. I also asked the Facebook group I belong to, and they too said that doctors no longer recommend it as it is not effective, all except for one, who said she had great success; her testimony is why I asked my doctor about possibilities. I thought that was the end of it until new articles started to emerge.
There are many articles popping up where corticosteroids have helped CAD patients. I am wondering why this treatment is being overlooked or, more importantly, why it works for some and not others. Perhaps it is time for doctors to reconsider its use for some CAD patients.
Doctors seem to agree that corticosteroids are helpful when a patient has both warm and cold agglutinins and in instances where they have a secondary disease like rheumatoid arthritis. While I did find 3 different cases where steroids did help CAD patients, there wasn’t enough information explaining why it has helped a few and not the masses.
Nonetheless, I wonder if steroids should be reconsidered for treatment. It may be useful at least on a case-by-case basis. A study needs to be done to determine when and why it helps some and not others. This will be my next discussion with my hematologist. I am eager to hear his thoughts. Either way, it is a positive sign that some patients may have more options than they realized.