Join us as we explore the meaning of remission in rheumatic disease through the experiences of our patient community and insights from rheumatologists. We’ll uncover diverse perspectives on remission and learn how patients and doctors navigate the journey together toward improved health.
Themes on Remission
Through our discussions, several themes emerged, revealing different meanings attached to the concept of remission:
- Remission is subjective, varying for each individual.
- Treatment decisions should be a collaborative process between patients and their doctors.
- Open communication with your doctor about what remission means to you is crucial.
Patient Perspectives on Remission
Our vibrant community members, who live with rheumatic diseases ranging from ankylosing spondylitis to psoriatic arthritis to rheumatoid arthritis, shared their personal understandings of remission.
Here’s what they had to say:
- “For me, it means that my sed rate is normal and I have little to no swelling or pain on a daily basis.” — Liz R., rheumatoid arthritis
- “I feel like only partial remission is possible for me. I understand remission to be long term (like 3+ months) with low or no disease activity. — Tara B., ankylosing spondylitis
- “It’s a dream. I’ve never experienced it.” — @Dedradavis, psoriatic arthritis
- “To me, remission means no inflammation, pain or symptoms. It means I look and feel seemingly healthy.” — @Gracefully_jen, rheumatoid arthritis
- “Not having to worry if today’s activity will have me in bed the next day or days.” — Jill M., rheumatoid arthritis
- “I don’t think AS goes into remission…I just have good and bad days.” — Alex K, ankylosing spondylitis
- “Well first off, it took me some time to accept that, for RA at least, it’s drug-induced remission. I feel like drug free remission is what remission means to me. Otherwise even if I am symptom free, the medication I am taking is still affecting my immune system, weakening its ability and ultimately affecting my overall health. I’m still hoping and praying for a cure but for now I am truly grateful that there is treatment, and for the most part, it is working for me.” — @Averycrampton, rheumatoid arthritis
- “Remission to me is reduction in pain. Less pain medication. No damage progression. Able to not be reliant on biologics. I’m there. It took a while.” — Katie P., ankylosing spondylitis
- “Remission for me stands when I am free of all symptoms for at least two months. We will then discuss end of treatment.” — @Mindfuljourneys, dermatomyositis
- “For me remission means I can go about my normal daily life with no pain, mobility issues, or fatigue. Being in a flare up is so hard, I’m greatly appreciative that I am on a treatment that works for me. Sending strength to those who are currently in a flare.” — @Pollyspocketvintage_ , rheumatoid arthritis
- “Remission is low or no disease activity measures, an improvement in pain, a sense of feeling better, and improved quality of life.” — @David J., ankylosing spondylitis
- “I compare symptoms to boiling over on a stove. When docs/family/people see the pot spilling over they have an understanding and help treat you. Once the pot is down to a rapid boil and not spilling, they call it remission. Still boiling though. I’ve never been taken off the heat.” — @Jeanne.w.s, ankylosing spondylitis
- “Thriving every day!” — @Iam_catinamorrison, rheumatoid arthritis, fibromyalgia
- “I had a little time where I felt ‘normal.’ I remember walking up and down stairs holding things. It’s back with a vengeance now though.” — @Pommy38, rheumatoid arthritis, fibromyalgia
- “Remission would mean a significant reduction in pain and a significant improvement in function.” — Steph K., ankylosing spondylitis
- “I would love to see true remission, but as long as I have symptoms, without organ damage, I call it quiescence, not remission.” — @Thebumblebeehive, systemic lupus and rheumatoid arthritis
- “Not having disease activity.” — @Kristina.kostuk, RA and OA
- “In the 30 years since diagnosis, I have managed my disease but have never had remission.” — Melody P., rheumatoid arthritis
- “That I could have a day’s activity longer than 10-3:30.” — Anne M., rheumatoid arthritis, osteoporosis, CRPS in knees, Graves’ disease
Rheumatologists’ Insights on Remission
Liana Fraenkel, MD, MPH, Professor of Rheumatology at Yale School of Medicine and Section Chief of Rheumatology at Berkshire Medical Center, explains that remission means “feeling as if you don’t have the disease anymore. No more swollen joints, and you can finally feel normal again.”
To achieve this goal, rheumatologists employ a strategy known as treat-to-target. This approach, as Dr. Fraenkel explains, aims to minimize disease activity and symptoms, providing the best chance of reaching a state of remission or inactive disease.
Additionally, rheumatologist Grace C. Wright, MD, PhD, underscores the importance of understanding the broader impact of the disease on patients’ lives. “I always tell my patients to give me an idea of the experience that they’re living, not just the data points that we check off when we do our disease activity assessments.”
Does Remission Mean Stopping Your Medication?
Not necessarily. “Remission doesn’t mean you’re off your medication though. In rheumatology, it is expected that the patient will continue to be on a DMARD (disease-modifying anti-rheumatic drug),” says Dr. Fraenkel, who likes to see patients in low disease activity or remission for several to many months before tapering off DMARDs.
If a patient wants to taper off supplemental medications, such as an NSAID (non-steroidal anti-inflammatory drug), they should discuss this option with their doctor. Tapering off a medication is considered if the patient wants to do so but can maintain the lowest risk of flaring.
Perhaps most importantly, says Dr. Fraenkel, is to make it a “shared decision-making process.”
Remission holds various meanings for individuals living with RA, influenced by personal experiences and treatment outcomes. Effective communication between patients and their health care providers is essential to align expectations and optimize treatment decisions.
Remember, remission may look different for each person, and achieving a state of reduced symptoms and improved quality of life remains the primary goal.
Check Out Remission Possible
Our Remission Possible podcast is dedicated to guiding and supporting you on your mission to take back your life and control symptoms. In each episode, we’ll share inspiring stories from patients who are succeeding in their mission and discuss how patients and doctors can work together to better understand the optimal course of treatment for different chronic conditions while keeping personal goals and lifestyle choices in mind. Listen now.
This article was made possible with support from AbbVie.