How to Build a Lupus Treatment Team

Medically Reviewed by Sabrina Felson, MD on March 09, 2024
6 min read

Lupus is a long-term, or chronic, health condition that can set off inflammation and pain in any part of your body. It usually affects skin, joints, and internal organs like the heart and kidneys.

No matter which parts of your body the disease affects, there are doctors who can treat it and help you feel your best.

Your lupus treatment team will help you:

  • Control your symptoms
  • Lower inflammation
  • Keep your overactive immune system in check
  • Prevent or treat flare-ups
  • Limit organ damage

A number of specialists care for people with lupus, its complications, and related health problems. If you have a child or teen with lupus, take them to pediatric doctors who practice these types of specialties:

Rheumatologist. This specialist is an expert on joints and muscles and some autoimmune diseases. They’re typically your go-to doctor for lupus. They will follow you for lupus complications and refer you to doctors in other specialties when needed. They can help you take charge of problems like:

  • Muscle aches and pains
  • Joint pain and inflammation
  • Arthritis
  • Tendonitis
  • Carpal tunnel syndrome
  • Osteoporosis

Your rheumatologist might suggest that you see additional specialists if lupus impacts your kidneys, heart, or brain. Some potential referrals might be:

Nephrologist. This is a kidney doctor. Lupus can cause problems with your kidneys, which are a pair of bean-shaped organs that filter waste and extra water from your blood and help control your blood pressure.

It’s important to see your rheumatologist regularly to check your kidney function and do a kidney test. Ideally, testing should be done within 5 years of your first lupus symptoms. It’s during this timeframe that a kidney disease called lupus nephritis often develops, and it might not cause symptoms at first. Without treatment, it could gradually make your kidneys stop working.

Cardiologist. This is a heart doctor. Lupus makes you more likely to get heart disease, and it can cause inflammation in different parts of your heart and cardiovascular system.

Your regular doctor and rheumatologist can help lower the risk for these serious conditions. But if you do get lupus-related heart or cardiovascular disease, a cardiologist can diagnose and treat them.

Along with making heart-healthy lifestyle changes (like eating healthy and getting exercise), talk to your doctor about your heart risk. Some lupus drugs, like steroids, can raise your chances for heart disease. Ask the doctor if your meds affect your heart risk, and only take steroids if your doctor prescribes them to treat your lupus.

Dermatologist. This doctor specializes in diagnosing and treating skin diseases. Most people with lupus get skin problems like sores and rashes. They’re not contagious. Certain types of sores and rashes are unique to lupus, and collectively they’re called cutaneous lupus.

It’s also possible for lupus to bring on skin-related problems like:

  • Hair loss
  • Hard, white lumps under the skin (calcinosis)
  • Sores inside the mouth, nose, or vagina (mucosal ulcers)
  • Blood vessel problems that are visible on the skin

If you have any skin symptoms, see a dermatologist for help. They can find the right treatment for you.

Neurologist. This doctor specializes in diseases of the nervous system, which includes your brain and spinal cord. They’re one type of specialist -- along with rheumatologists, psychiatrists, and neuropsychologists -- who can find out if you’re having nervous system problems, which affect some people with lupus.

Depending on the part of the nervous system that lupus strikes, it can cause problems like:

A neurologist on your care team can often prescribe medications that treat and reverse nervous system problems. A specialist called a cognitive therapist can help you learn how to manage brain fog.

Gastroenterologist. This doctor diagnoses and treats diseases of the digestive tract and liver. It’s common to have digestive system problems with lupus. Some are caused by the disease itself, while others can be due to things like treatment side effects and infections.

Digestive system problems related to lupus can include:

  • Ulcers or gum inflammation in the mouth
  • Acid reflux or gastroesophageal reflux disease (GERD) in the esophagus
  • Peptic ulcers in the stomach
  • Inflamed abdominal lining and a build-up of fluids in the abdomen
  • Inflamed blood vessels or irritable bowel syndrome (IBS) in the intestines
  • Inflammation in the pancreas (an emergency called pancreatitis)
  • Inflammation of the liver (hepatitis)

A gastroenterologist can work with your rheumatologist to help you take charge of digestive problems.

Pulmonologist. This is a lung doctor. They can treat lung problems that can stem from lupus, like:

  • Inflammation of the tissue that covers the lungs (a common condition called pleuritis)
  • Inflammation of the lung itself (pneumonitis)
  • Scarring of the lungs (interstitial lung disease)
  • High blood pressure in the blood vessels of the lungs (a rare problem called pulmonary hypertension)

Perinatologist (maternal-fetal medicine). This is an OB-GYN who specializes in complicated and high-risk pregnancies. While it’s possible to have a healthy baby if you’re a woman with lupus, the disease does raise your chances for pregnancy complications.

That’s why it’s important to see a perinatologist and/or a maternal-fetal medicine specialist if you get pregnant. They can do tests that check on your baby’s heart health in the womb. When you’re a mom-to-be with lupus, it’s rare but possible for your baby to get a condition called a congenital heart block. It needs to be treated right after the baby is born.

If you’re thinking of having a child, it’s important to talk with your lupus doctor about your pregnancy plans at least 3 to 6 months before you try to conceive. That way, they can come up with a plan to lower your chances of problems, which may include changes to your lupus medications.

You can start by going online to your state’s chapter of the Lupus Foundation of America. It may offer a list of doctors near you who diagnose and treat lupus.

If you need help finding a rheumatologist in your area, you can search for one on the American College of Rheumatology’s website.

Seeing more than one doctor for lupus and related health problems can be time-consuming and stressful. These tips may help:

Help keep every specialist on your team in the loop.

  • Write down your doctors’ names and what they do for you. Give this list to all of your specialists.
  • Ask your main doctor (also called your “primary care doctor”) to send your medical records -- like past test results and medical notes -- to your specialists. You can also ask them to list all your medical problems and treatments.
  • Ask your lupus specialists to tell your primary care doctor about their treatment plans for you.

Make a list of any prescription drugs, OTC meds, vitamins, or supplements you take. Include the dosages for each. It’s important to share this info with all of your doctors, so they can make sure your pills don’t mix badly with each other and cause harmful side effects.

Track your symptoms. Write down any you notice. Be as specific as possible. A checklist can help you stay organized.

Jot down questions for your doctor. Put your most important questions at the top of the list, in case you run out of time to ask them all. Don’t forget to bring a paper and pen, tablet, or phone to the appointment so you can jot down your doctor’s answers.

Consider bringing a loved one or close friend to appointments. They could help you take notes and remember what the doctor said, or they could just give you emotional support if you need it.