When to Call the Doctor
When you have lupus, it’s important to notice when your condition changes — and know when you need to call your doctor.
Work Closely With Your Doctor
When your doctor knows how you’re feeling, they can help by making changes to your treatment plan or helping you find resources and support for managing your symptoms. That’s why it’s important to work closely with a doctor you trust. A good doctor will make you feel heard and respected. They should answer all your questions, give you clear guidance about how to manage your condition, and work with you to come up with a treatment plan that feels right for you.
Know When to Call
Much of the time, you’ll talk with your doctor in person at your appointments. But it’s important to have a conversation with them about reasons you might need to call for advice between visits. In general, you should let your doctor know right away about any changes you notice to your condition and any problems you’re having with managing lupus.
In some cases — like if you experience a problem or symptom that could be life threatening — you may need to call for urgent help. In case of an emergency, call 9-1-1.
Talk to your doctor about what problems need urgent evaluation. And keep in mind that everyone with lupus experiences it differently. A symptom that might require an urgent call for one person might not be urgent for another person.
When to Call Your Lupus Doctor
Call your doctor right away if you:
- Experience a lupus flare (periods when your symptoms get worse)
- Notice any changes to your condition — like new symptoms or symptoms that get worse
- Try a new medicine for lupus that doesn’t seem to be helping
You should also call your doctor if you:
- Have a hard time managing at work or school because of lupus
- Experience side effects from your medicines that are difficult to deal with
- Have been feeling down for some time or lose interest in things that used to be important to you
It’s also a good idea to use a journal or the notes app in your smartphone to keep track of lupus symptoms and how you’re feeling each day. Then, when you meet with your doctor, you can go over the log together.
When to Call for Emergency Help
Go to the emergency room or call for emergency help (in the United States, call 9-1-1) if you experience certain symptoms, including:
- Trouble breathing or coughing up blood – could be a sign of serious lung bleeding
- Chest pain – especially if it feels sharp, tight, or like pressure on your chest
- Sudden weakness or numbness in the arms or legs – could be a sign of transverse myelitis or stroke-like symptoms
- New confusion, severe headache, or trouble speaking – changes in thinking can be serious in lupus
- Fever over 101°F – especially if it doesn’t go away with medicine or comes with chills or shaking
- Severe belly pain – or vomiting, especially if the belly feels swollen or tender
- Bruising or bleeding easily – like bleeding gums, nosebleeds, or tiny red spots on the skin (could be from low platelets or thrombocytopenia)
- Little or no urine, or very dark or bloody urine – may signal serious kidney problems
- Having thoughts of self-harm or suicide – emotional health is just as important; get help right away
If you’re not sure whether you need emergency help, call anyway! The responders who answer emergency calls are trained to help figure out if you need urgent help.