I have cold agglutinin disease (CAD), a rare form of autoimmune hemolytic anemia. There are treatment options depending on an individual’s needs, but not a cure. Luckily, more research is being done and more industries are getting involved to help us find one.
From time to time, I have heard patients with CAD speak about how they are in remission. I’ve only ever associated remission with cancer. It’s a word that everyone longs to hear when you have cancer. It was weird when I first heard this because CAD isn’t cancer—it’s an autoimmune disease—so I didn’t think it applied.
There have been people who, through treatment, have experienced full remission from CAD, meaning their hemoglobin and other blood laboratory values have gone back to within the normal range and their anemia has subsided. This was the only type of remission I knew of while managing CAD.
Recently, there was a discussion on one of the CAD patient websites I visit. People talked about remission in the sense that their numbers went back into range. In a disease like cancer, that means it is gone; doctors were successfully able to treat and eradicate it. At least, this is my understanding.
Read more about the etiology of CAD
In dealing with CAD, from what I am gathering through these conversations, there are different forms of remission.
Remission in CAD can also mean that your bone marrow has gotten to the point where it is able to compensate enough that you experience a level of remission. Although the disease remains, your bone marrow is able to replace your red blood cells at a rate that frees you from anemia. There are no symptoms, and you feel normal. This is called compensated hemolytic anemia.
I am guessing here, but this must be the point I was at years ago when my labs would come in normal, but there would be note on my chart that said “cold agglutinins present.” Does that mean that my bone marrow has slowed the compensating production of hemoglobin? Is this why I had a major event a few years ago that brought me to my diagnosis? At the time, the doctors had no idea what was going on, so there could be no definitive answer to that question. But it does make me wonder.
At this point in my CAD journey, my hemoglobin has been in the high 10s for quite some time now. Although not ideal (it should be 12 or higher), it does mean that my CAD is mild, and my hemolysis, unless exacerbated by a cold event or illness, should be relatively low. This is all good news, but I have primary (no known cause), which means my CAD will probably not spontaneously go away. Unless, of course, I try other available treatments, then I may have a chance. However, because I am considered a mild case, any other treatment will more than likely not be approved.
Read more about treatments for CAD
In addition, when there is an underlying cause, it can be treated, and it is possible to go into remission. There are also those whose CAD is caused by a virus and when the virus eventually clears up, their CAD also goes away completely.
CAD can be a serious disease. I can tell you with certainty that when your hemoglobin drops low and fast, the sickness you feel is like nothing else. When I had that first exacerbation and received my diagnosis, I was terrified. My body stopped functioning normally in what seemed like a day, and I didn’t understand what was happening. I couldn’t breathe, and my chest, arms, and legs burned. I could barely walk, but luckily, my CAD was diagnosed within a short period of time. I am blessed to have mild anemia at this point, and I pray it stays that way.
Of course, I would love nothing more than to achieve remission, but after that first ordeal and even after the couple of years of having to deal with the constant lifestyle changes and always be on guard, I am thankful to be where I am. And even if that means I have to live with a slightly lower hemoglobin, continue to avoid cold drinks, food, and weather, and my bone marrow can continue to successfully compensate, I’ll take it. As we all know, it could always be worse.