PATIENT NAVIGATOR CORNER JUNE 2024 | BY RITA PICCIN

The Patient Navigator program is funded in part by Aurinia Pharmaceuticals and an earmark from the State of Ohio and managed by the Ohio Department of Health.

As lupians know first-hand, having lupus can be very challenging. Daily symptoms can affect every part of life, which can make living with lupus overwhelming. It can be difficult to know where to start. There are many things you, the lupus warrior, can do to “take the reins” and manage your disease. Two important tools that can help are lupus journals and flare plans.

A lupus journal or a lupus diary helps you document your unique lupus journey and can be an important part of your treatment plan1. It can help focus you on yourself - your symptoms, your triggers, your response to treatment, how you feel, and how lupus is affecting your daily activites. By tracking your journey on a regular basis, you develop an understanding of your lupus and what is “normal” for you. You can notice trends of new and/or worsening symptoms, so that you can contact your doctor in a timely manner and hopefully prevent flares or treat them as soon as they occur. You also can also see patterns on how lupus is impacting your daily life, and make adjustments as needed.

You can write in a notebook or binder or record digitally in an app, whatever method works best for you. How often you write in your journal and how much information you document is totally up to you. Your lupus journal can be simple or complex, whatever you feel you need to keep track of. In general, a lupus journal may contain:

• Daily symptoms: What are they? How often do you have them? Are they continuous or do they come and go? How mild or severe are they? Is there anything that you do that makes the symptoms better? Are there any new symptoms that you have not experienced before?

• Triggers: What are they? What do you do to avoid them?

• Medications: What are they for? How do you take them? How often do you take them? Do you have any changes in your symptoms? Do you have any side effects? Are you missing or not taking doses and why?

• Doctor’s instructions: What are they? Do they help your symptoms? Are you following them?

• Non-medication treatments or activities: Are there treatments or activities that make you feel better? (for example: hot or cold packs for pain; going for a short walk to relieve stiffness; taking a nap during the day to improve fatigue, etc.) what do\es and does not work for you?

• Feelings or mood tracker: How are you feeling (happy, depressed, anxious, etc?) How often do you feel this way? How mild or severe? Is there anything you do that makes you feel better? Are there any new feelings that you have not felt before?

• Your next doctor’s appointment: What information about your lupus do you want to share? How is your lupus impacting you? Do you have any medication side effects? Did you change or stop any medications? Do you have any questions?

A lupus flare plan is a natural extension of your lupus journal. The Lupus Foundation of America’s Your Lupus Flare Plan “is designed for you to fill in with help from the doctor who is managing your lupus care and treatment.”2

If you do notice new symptoms or your symptoms are worse or more frequent, you and your doctor should discuss what you should do so that you can prevent flares or treat them as early as possible. The plan includes the following steps2:

1. If I think I’m having a flare, will my rheumatologist want to see me immediately?

• If yes, what should I tell the receptionist to make sure I’m seen as soon as possible?

• What should I do if I’m told that the next appointment is several weeks away?

2. Should I have blood and urine tests done during every flare?

• If yes, what is the procedure I should follow to have the tests ordered and done quickly?

• How quickly does it take to get test results?

• How do I find out the results and what do they mean?

3. How will I recognize symptoms of a lupus flare?

• This is a list of common symptoms that could indicate a lupus flare. Check all that you are currently having and share them with your doctor.

• Fatigue

• Joint pain

• Joint stiffness

• Hair loss

• Sores in mouth or nose

• Chest pain that hurts upon breathing in

• Numbness, tingling, burning pain

• Skin rash or sores

• Fever (NOTE: if you have a fever, see a doctor immediately to find out whether the fever is due to an infection or due to lupus)

• Others (list)

4. The symptoms you had when you were first diagnosed with systemic lupus will often repeat themselves during flares.

• Write down symptoms you had when you were diagnosed.

5. Lupus problems or symptoms that occurred after your diagnosis of lupus was made also may recur during lupus flares.

• Write down these symptoms.

6. A new symptom you’ve never had before might mean a lupus flare is underway. A new symptom also could be due to something else (for example, a medication side effect or a viral illness).

• Write down these symptoms.

7. What can I do myself at home to help with each flare problem?

8. There are certain flare triggers that are commonly experienced by people with lupus.

• Record all that you have experienced in the past 2 weeks:

• Ultraviolet (UV) light exposure

• Cigarette smoke

• Sulfa antibiotics

• Echinacea herbal supplements

• Alfalfa and mung bean sprouts

• Stress

• Low vitamin D

• Not taking medications as prescribed

• Others (list)

9. For what problems should I seek urgent medical care, such as going to my closest urgent care center or emergency room?

• Numbness on an entire half of body or face, especially if accompanied by weakness, difficulty talking, confusion, loss of coordination, vision problems

• Temperature greater than 100.5 °F, especially if accompanied by chills

• New-onset chest pain or shortness of breath

• Pain, swelling, and possible redness of the calf area

• Weakness of an arm, leg, or side of the face

• New-onset severe headache, especially if accompanied by nausea/vomiting, fever, weakness or numbness of arm/leg/ face, or if it is “by far the worst headache I’ve had in my life.”

• New-onset severe abdominal pain especially if accompanied by fever, nausea/vomiting, blood in the stool, black asphalt-like stool

• Sudden onset blurred vision especially if accompanied with blindness in one eye, red eye, fever, headache

10. FINAL STEP: Show your doctor the flare plan and ask if he or she agrees or would make any changes. Ask your doctor if there is anything to add in light of your particular lupus problems and medications.

Taking control of your lupus journey is possible, and keeping a lupus journal and creating a lupus flare plan can help. If you are interested in starting a lupus journal and/or flare plan, there are some that can be ordered or downloaded at www.lupusgreaterohio.org.

If you would like to speak with a patient navigator about lupus journals and flare plans, please contact us at 1 (888) NO-LUPUS, (440) 7170183, or info@lupusgreaterohio. org. We are happy to help!

References:

1. Living with Lupus Fact Sheet. Lupus Foundation of America. https://lupusgreaterohio.org/wp-content/uploads/2021/02/Living-with-Lupus-compressed.pdf

2. Your Lupus Flare Plan. Lupus Foundation of America. https:// lupusgreaterohio.org/wp-content/ uploads/2023/11/Your-Lupus-FlarePlan 2023-compressed.pdf