Immunotherapy When You Have an
Autoimmune Condition
If you live with an autoimmune condition, you know what it’s like to make your way through uncharted territory. There’s no map for navigating your condition; you and your doctor have to interpret the signals your body sends, then you travel in that general direction and trust that you’ll find more clues along the way.
Cancer care is a different journey. Oncologists are not “follow your nose” travelers. They are expert map-readers (data, scans, tests, research), and they’ve been trained to rely on and adhere to those maps to find the safest and most efficient route.
This explains why some oncologists are hesitant to offer immunotherapy to patients with preexisting autoimmune conditions – there isn’t a map for that. Patients with autoimmune conditions were not included in the clinical trials for immunotherapy treatments, so oncologists don’t have the data they normally rely on to make treatment decisions for these patients.
As you know from your autoimmune journey, just because a road’s not on the map doesn’t mean there’s no road there. We’re learning from observational and retrospective studies that some patients are able to undergo immunotherapy treatment safely and effectively, under the right circumstances.
While some oncologists are uncomfortable even considering immunotherapy for their patients with autoimmune conditions, other oncologists offer immunotherapy to their autoimmune patients just as they would any other patient – and in some cases, this can hold its own dangers. Oncologists who are unfamiliar with autoimmune conditions may charge forward based on the treatment guides for that cancer type without understanding the increased risk of serious side effects. Without consultation and support from rheumatologist or other specialists, these oncologists and their teams can struggle to help their patients when side effects do emerge.
Whether your oncologist seems overly cautious or not cautious enough, you should feel empowered to help the members of your care team access the expert, scientific resources and information they need to navigate this treatment road without a clear map.
This starts with a clear understanding of the risks before you start treatment.
Treatment Risks When You Have an Autoimmune Condition
Immunotherapy works by releasing the “brakes” on the immune system, and when your immune system already tends to attack your healthy tissues, removing those brakes can be risky.
Releasing immune brakes can:
- Trigger a flare of your underlying autoimmune condition, returning your controlled disease to active status, sometimes severely
- Worsen the severity or scope of your autoimmune symptoms — for example, converting mild joint involvement in RA to severe polyarthritis requiring hospitalization
- Introduce new immune-related side effects, which could affect lungs (pneumonitis), liver (hepatitis), gut (colitis), endocrine glands (thyroiditis, adrenal insufficiency), skin, kidneys, and/or nervous system
- Create diagnostic ambiguity — making it harder to distinguish treatment side effects from autoimmune flares, which can complicate treatment
- Interact with immunosuppressive medications — potentially masking treatment side effects or interfering with immunotherapy’s mechanism
Below are some factors that tend to lower risk (and so, may increase the chance that immunotherapy could be a viable option):
- Autoimmune condition is in clinical remission
- Condition has been stable for 12+ months
- Currently on low or no immunosuppressive medications
- Autoimmune condition does not involve organs that are high-risk for side effects (lungs, bowel, CNS, kidneys)
- Access to autoimmune specialist(s) during treatment
- Cancer type has a strong expected response to immunotherapy
How to Advocate for Yourself
When it comes to your autoimmune condition, you may be comfortable talking openly with your doctor about treatment decisions. But in cancer care, where treatment options are fewer and more well-defined, and where the stakes are high, decision-making conversations feel very different and can be intimidating.
Below are some suggestions for approaching the conversation with your oncologist:
- Bring Your Oncologist Fully Up to Speed on Your Autoimmune Condition. Request a current disease activity assessment from your autoimmune condition specialist(s). Bring formal documentation of your condition’s current severity, medication list, and stability to every oncology appointment.
- Request That Your Autoimmune Specialist Be Consulted. Just as an autoimmune specialist is brought in as a co-decision-maker when immunotherapy is being considered, they also should be brought in when immunotherapy is being excluded. Make sure your specialist has an opportunity to weigh in before a final decision is made.
- If You’re Being Excluded from Immunotherapy, Ask Why. If your oncologist is hesitant to treat you with immunotherapy, ask them to explain whether the exclusion is based on your specific condition and current disease activity, or on a blanket policy (based on the lack of representation in clinical trials). Ask: “Is this based on my particular situation, or on general trial exclusion criteria?”
- Seek a Second Opinion. For some cancers, immunotherapy can mean the difference between life and death, so it’s worth getting a second opinion. Look for a major cancer center (NCI-designated Comprehensive Cancer Center) with experience in treating patients with both cancer and autoimmune disease. Larger centers see this combination more frequently and may have more nuanced protocols. Many patients get a second opinion at one of these cancer centers but continue to get their care locally, relying on collaboration between their local oncologist and the cancer center.
- Ask About Clinical Trials. Some clinical trials specifically include patients with autoimmune conditions. Ask your oncologist if any trials are open for your cancer type that do not exclude autoimmune patients. ClinicalTrials.gov is publicly searchable.
- Bring a Patient Advocate or Supportive Person. These treatment conversations can be complex and stressful, so it can be helpful to bring a support person — someone who can take notes, ask follow-up questions, help you process information, and chime in to advocate for you, if needed. A trained patient navigator can be especially helpful.
Moving Forward Safely
If you, your oncologist, and your autoimmune specialist(s) determine to move forward with immunotherapy, there are steps you can take to minimize and/or manage risks and optimize your treatment:
- Pre-Treatment Autoimmune Disease Optimization. Before starting immunotherapy, work with your autoimmune specialist to bring your autoimmune condition to its best-controlled state. This may mean adjusting medications, completing a disease activity assessment, and establishing a clear baseline.
- Modified Dosing or Interval Schedules. Talk to your care team about ways you might be able to limit cumulative immune activation while still providing meaningful anti-tumor activity. This might include reducing treatment doses, extending intervals between treatments, or planning for a shorter treatment course.
- Rigorous Prospective Monitoring. Make sure your team is closely tracking both cancer response and autoimmune activity throughout treatment — with regular labs, symptom questionnaires, and low thresholds for specialist consultation — to allow early identification of flares or treatment side effects.
- Clear Escalation and Stopping Protocols. Talk to your oncologist and autoimmune specialist(s) to establish, in advance, exactly what symptoms or lab values will trigger a pause, dose reduction, or permanent discontinuation — so decisions are made systematically rather than reactively in crisis.
A Final Word
While having an autoimmune condition can make your cancer care a little more complex, it has also prepared you well for the treatment journey ahead. You know your body, you know how to collaborate with your care team, and you know how to handle curve balls. Being an attuned, resilient patient is going to serve you well during cancer treatment – and we take the wins where we can get them.
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