What to Know About Telehealth for Lupus

When you have lupus, your symptoms can make healthcare provider’s appointments difficult to get to. You now have an option that could make it easier because of the COVID-19 pandemic and advances in technology. With a telehealth appointment—from the comfort of your home—you can have your appointment on your computer, phone, or other device.

Lupus is an autoimmune disease in which your body attacks various organs, which can include the heart, lungs, kidneys, brain, or blood cells. This leaves behind damage and inflammation and causes symptoms. Common lupus symptoms include pain, fatigue, stiff joints, and much more, depending largely on what organs are being attacked. Some days, your symptom load may mean an in-person healthcare provider's appointment is too much for you, in which case telehealth can help.

Benefits of Telehealth for Lupus Patients - Illustration by Michela Buttignol

Verywell / Michela Buttignol

When to Use Telehealth for Lupus

You may be able to get a lot of your healthcare needs taken care of via telehealth. Depending on what’s offered by your various medical providers, you may be able to have telehealth appointments with your rheumatologist, primary care provider, nurse practitioners, physician’s assistants, and others.

The ideal time for a telehealth visit is when you just need a conversation and not a physical exam. This can include appointments for:

  • Following up on your medication(s) or other treatment(s)
  • Discussing any side effects (nonemergent ones) you're having
  • Getting prescription refills
  • Going over the results of lab or imaging tests

Telehealth is also valuable when you want to avoid possible exposure to a communicable illness, such as COVID-19 or influenza, or when you’re sick and don’t want to expose other people to your germs.

Medication or Treatment Follow-Up

Especially with a new treatment, your healthcare provider may want to check in on you after a few weeks or months to see how your treatments are working. Or maybe a drug you’re taking requires frequent monitoring that doesn’t require lab work. You may also want to discuss adjusting medication dosages and ask your healthcare provider any questions you have. Telehealth can help in these situations.

This can be especially valuable if you have to try multiple drugs to find the ones that work for you without too many side effects, which is fairly common with lupus.

Reporting Side Effects

As long as it’s not an emergency, telehealth appointments are a good way to talk about medication side effects with your healthcare provider between appointments. You can get guidance on how to deal with the side effects, decide on whether to continue with the treatment, adjust the dosage, or discontinue it and start something new.

Medication Refills

For most prescription drugs, you have to see your healthcare provider periodically for them to continue giving you refills. If they don’t need to examine you or check your vital signs for side effects, telehealth may be a good option in these instances.

It’s not appropriate in every case, though. To keep refilling some drugs, they may need to monitor your vital signs for things like high blood pressure or unintended weight gain, which are common problems with some lupus treatments.

Reviewing Test Results

Unless you’re able to use a home test kit, you can’t avoid leaving the house to have lab work done. But you and your healthcare provider can go over the results during a telehealth appointment.

You may even be able to log in to a secure system to look over the results at the same time as your healthcare provider. Ask whether you’ll have access to the results before your appointment so you can be prepared with questions. 

You May Need to Be Seen in Person If…

  • You have new symptoms that warrant a physical examination
  • You need to be vaccinated
  • You need lab work or imaging done
  • Your vital signs need to be monitored
  • You need urgent or emergency care, such as for side effects or severe symptoms (e.g., high fever, fainting)
  • Hands-on treatment is essential, such as with eye exams, dentistry, physical therapy, and chiropractic adjustments

Benefits and Challenges

It’s common to wonder whether you can get adequate medical care without being in the same room as your healthcare provider, especially for a condition as complex as lupus. Researchers have found that rheumatologists can provide high-quality treatment and monitoring via telehealth. One study even found that older, less tech-savvy patients are willing to use it as long as they have proper instruction.

When you contend with the myriad symptoms of lupus, advantages of telehealth appointments include:

  • Canceling less often: Because you can log in to the appointment from your bed or couch, you won’t have to cancel because your symptoms are too bad that day. That means fewer long gaps between appointments, which can improve your overall care.
  • Conserving your energy: You won’t wear yourself out getting to and from the appointment, which means you can put your energy into something else and not worry so much about pacing yourself.
  • Less missed work: If you’re employed, telehealth allows you to take a short break from work for an appointment rather than taking part of a day off. That means you can save your sick days for when you’re actually sick or your lupus is flaring.
  • Seeing specialists outside your area: With telehealth, geography doesn’t matter. You may be able to see a specialist who lives farther away than you can travel on a regular basis. That could make it easier to find someone who is experienced with lupus.
  • Lower costs (in some cases): Some practitioners charge less for telehealth appointments, and some insurance companies have smaller co-pays or cost shares. This is far from universal though, so make sure you know up front what your financial responsibilities are.

Challenges of Telehealth

Telehealth does present some challenges, both in general and for people living with lupus:

  • Problems understanding the system: Whether due to age, cognitive symptoms of lupus, or both, the technology may be hard for you to understand, especially at first. Things like technical instructions and installing apps may be frustrating.
  • Unreliable internet connection or devices: If your Wi-Fi connection is slow or unreliable, or your computer or other devices aren’t working well, it may complicate telehealth appointments.
  • Taking your own vitals: Your healthcare provider may ask you to check your weight, heart rate, or even blood pressure at home. That may be daunting for some people. Also, you may need to spend money on a blood pressure cuff.
  • A lack of personal connection: Especially if you’re not accustomed to communicating electronically, you may not feel connected to the provider if you only see them via telehealth.

A survey from 2020 found that most people don’t reject telehealth for these reasons. It found 84% of people were more likely to choose a healthcare provider who offers telehealth appointments than one they can’t see online.

How to Prepare for a Telehealth Visit for Lupus

Prepping for your telehealth medical visit involves a few more steps than a regular appointment. You’ll want to make sure you know:

  • Whether you’re talking to the healthcare provider or someone else on the medical staff
  • Whether the appointment is audio-only or audio and video
  • When you should receive an email or phone call with instructions and what to do if you don’t receive it
  • How long the appointment will be
  • Whether your insurance covers your visit and what your costs will be
  • Whether you’ll need to provide information on vital signs
  • If you’ll need to download anything, and if so, whether you can get the information early so you can get help with it if needed
  • How to test your speakers and camera (if applicable)

To make sure communication goes smoothly, double check the phone number and email the provider’s office has on file.

If you have a rash, mole, or something else you want the healthcare provider to see, you may want to take a picture ahead of time and either share it on your screen or email it. Sometimes it’s hard to see well enough on a phone or webcam. If you need to show them something on the live camera, make sure you have adequate light and focus.

Standard Appointment Prep

Don’t forget to prepare for the appointment itself. Be prepared to talk about:

  • How your treatments have been working
  • How your symptoms have been
  • Whether you have any new symptoms, side effects, or concerns

Write this information down so you can refer to it during your appointment and make the most of your time with the provider.

Will Insurance Cover Telehealth for Lupus?

Many insurance companies cover telehealth, and sometimes you’ll end up paying less for them. However, be sure to check with your company to make sure.

In 2020, Congress waived some of the Medicare restrictions on telehealth reimbursements because of the COVID-19 pandemic. Even so, not all telehealth visits are covered, so be sure to check on current restrictions and ask your healthcare provider’s office if their services meet Medicare’s telehealth requirements.

Medicaid recipients in every state and the District of Columbia had telehealth coverage as of early 2021. Remember that states set their own policies, and they can change. A phone call before your appointment can save you a lot of stress—and money—when the bill comes due.

If you don't have insurance, you may be able to get telehealth appointments through private-pay services, but those can be quite expensive. Check with low-cost medical facilities in your area to see what your telehealth options are.

Finding a Telehealth Provider

Looking for a new provider who offers telehealth appointments? You have a few ways to look:

  • Check the provider’s website
  • Call the office and ask
  • See if your insurance company has a list of covered telehealth providers
  • Ask family, friends, and support group members for recommendations

What Happens During the Visit

Usually, before your telehealth appointment, you’ll get an email with instructions. It may have a link and instructions for downloading a telehealth platform or app, plus a link for the appointment. It may also tell you when to expect a check-in call from a nurse.

That call usually comes between 10 and 15 minutes before your appointment time. The nurse will call and go over your medications, concerns, and reasons for the appointment, just as they would if you were in the office. They may ask for vital signs at this time as well.

Especially if it’s your first telehealth visit, they may ask you to log on to the platform or app and test your speakers and camera. You’ll wait there until the practitioner joins you. In most cases, you’ll see both yourself and the provider on the screen. If they need to show you anything, they may temporarily switch your view to something on their screen.

Other than that, telehealth appointments are much like any other medical appointment. When the visit is over, you can sign out and close the platform or app.

As usual, your healthcare provider can then send in new prescriptions or refills (except for opioids and some other exceptions) and order lab work and imaging during or right after your appointment.

The systems used by doctors and other healthcare providers are required to be secure and HIPAA-compliant to protect your privacy.

A Word From Verywell

Telehealth has benefits you may find are ideal for someone with lupus. If you’re concerned about technical issues, ask for help from the office or someone you know who’s good with technology. Protecting yourself both from communicable diseases and the physical strain of a healthcare provider’s appointment will both have a positive impact on your health.

3 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
  1. Rezaian MM, Brent LH, Roshani S, et al. Rheumatology care using telemedicine. Telemed J E Health. 2020;26(3):335-340. doi:10.1089/tmj.2018.0256

  2. Cavagna L, Zanframundo G, Codullo V, Pisu MG, Caporali R, Montecucco C. Telemedicine in rheumatology: a reliable approach beyond the pandemic. Rheumatology (Oxford). 2021;60(1):366-370. doi:10.1093/rheumatology/keaa554

  3. Healthcare IT News. Telemedicine during COVID-19: benefits, limitations, burdens, adaptation.

By Adrienne Dellwo
Adrienne Dellwo is an experienced journalist who was diagnosed with fibromyalgia and has written extensively on the topic.