I feel great! Can I stop taking my medicine now?
If you are feeling well and are no longer having any signs or symptoms of active disease, that is not a coincidence, and your medications are working. This symptom-free state is known as remission. How long you should continue on your medications after remission is a complex question, and the decision should only be made after consulting with your rheumatologist.
The medications you are taking are controlling the part of your immune system that is confused and is attacking its own body. The medications are helping you to control the malfunctioning autoreactive white blood cells, that unfortunately, do not go away but rather enter a dormant or “sleep” state that require medications to stay inactive. Determining when your body has the ability to control these cells on its own is a major unknown factor. With most autoimmune conditions, the autoreactive cells persist and can be activated at any time and can cause a recurrence of disease.
There is research to support continuing medications for at least two years after entering into remission. See https://www.rheumatologyadvisor.com/pediatric-rheumatology/predicting-relapse-after-biologic-withdrawal-in-juvenile-idiopathic-arthritis/article/766234/. The clock starts when a visit to your rheumatologist’s office reveals that there are no signs of active disease and that you are clearly in full remission. Any subsequent flares would cause the clock to be restarted.
A basic knowledge of immunology is helpful in understanding why it is important to continue taking medications well into remission. Vaccinations are a helpful analogy. When you are vaccinated, your immune system creates memory white blood cells that attack the foreign invader and then enter a “sleep” phase until you are exposed again. Those memory cells survive for a very long time in your body and are activated and multiply to mount a defense, as needed when exposed to the activating agent. Over time, those memory cells die, and follow-up vaccinations (boosters) are needed to resupply your body with those cells.
Autoimmune conditions are caused by rogue white blood cells that are inappropriately activated by something in your own body, rather than by a foreign agent. When those cells become activated, they multiply, resulting in what is called a “flare”. Every time you have a flare, you are essentially getting a “booster” and are expanding the army of defective memory cells. The medications you are taking do not destroy the memory cells, but simply allow the memory cells to “sleep” and stay in a dormant and inactive state. The medications essentially “starve” the memory cells and they will eventually die over time. Stopping medications prematurely can cause a flare, which can reactivate and expand the population of memory cells. Every time you have a flare, the autoimmune disease is boosted, making it harder to control, and limiting the chance that you may be able to sustain long-term remission without medications in the future.
The ultimate decision to stop medications should never be done without first consulting your rheumatologist. In some cases, stopping medications suddenly can not only allow a bad flare of disease to occur, it can also be life threatening, depending on the medications that are being used. When your rheumatologist determines that it is safe to end treatment based on your unique profile, a customized plan can be created to carefully taper the medications, one at a time, so that prolonged remission off of medications can be achieved.