What To Expect When You Take Immunosuppressants
Last updated: March 2023
Lupus is an autoimmune disease. This means that instead of attacking invading germs, the body's immune system attacks its own skin and organs. Often, this assault by the immune system takes the form of rashes and joint pain, which can be debilitating. Sometimes, severe lupus can threaten major organs such as the kidneys, heart, lungs, and brain. Immunosuppressants are prescribed for lupus patients whose disease is severe and possibly life-threatening.
What are immunosuppressants?
Immunosuppressants can take many forms. Most people are familiar with chemotherapy, which is usually administered through IV and is a common treatment for cancer. Chemotherapy can also be taken in pill form. Another immunosuppressant commonly used to treat lupus and other autoimmune diseases is Azathioprine, also known by the brand name Imuran. Mycophenolate, or CellCept, is also used to combat organ-threatening lupus. Methotrexate is also prescribed for lupus and rheumatoid arthritis patients.
Immunosuppressant side effects
Immunosuppressants aren't without side effects. Patients should be aware that taking immunosuppressants might cause nausea or gastrointestinal issues. It's also important for lupus patients taking immunosuppressants to know that these medications will increase the chances of catching colds, viruses, and the flu. When taking immunosuppressants, be sure to wear a mask in crowded places and avoid anyone you suspect might be sick and contagious.
As a lupus patient with severe organ-threatening disease, I've taken both Imuran and CellCept, sometimes at the same time. Fortunately, I don't experience nausea or stomach issues because of my immunosuppressants. However, as a teacher, I have to be extremely careful not to catch a contagious illness from my students.
During the first year that I used immunosuppressants, I caught the flu from my then-husband. My husband had a sore throat and runny nose for a few days, then quickly recovered. I became so sick I couldn't move for 3 days. I lay in bed with my eyes closed because I was too exhausted and in too much pain to even read a book. I could barely walk to the bathroom. I couldn't shower or sit up to eat. On the third day, I decided that I would need to go to the emergency room if I weren't feeling better. I woke up feeling drained of energy the following morning but in less pain. I recovered from the flu, but I still remember those three days in bed as by far the worst flu I've ever had. Because of the immunosuppressants I was taking, my body was unable to defend me against the flu. The medicine that had saved my life also almost killed me.
Immunosuppressants have saved my life
Eight years later, I'm still on immunosuppressants. At the first sniffle or sign of fever, I stop taking them for a few days to allow my immune system to rally enough to fight off any germs that might have entered my body. Now that I understand how to use immunosuppressants, I haven't had to experience another terrible flu.
Overall, immunosuppressants have saved my life several times and greatly improved my daily life with lupus. I often think about how much less physical and mental trauma I would have had to experience if my first rheumatologist had recognized the severity of my disease and prescribed medication that would minimize the damage my rogue immune system was causing. Because of immunosuppressants, my current doctor and I have been able to keep my disease under control for years at a time.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?