How to Get the Most Out of Your Relationship with Your Lupus Doctor

By Maria J Antonelli, MD

A person finds himself or herself in a vulnerable position when they seek medical care. They are asking for advice on what is going on with their body, figuring out their disease, and asking what they can do to feel better or live their best life. I have found through my decade of practicing medicine that it might take months or even years to develop enough trust for patients to tell me their true concerns. It’s sometimes years into a relationship before I hear their deepest fears about why they aren’t taking their medicines, what trauma they have suffered, or why they continue to smoke. Unfortunately, a lot of physicians pass judgment on their patients and voice that judgment which creates barriers to trust-building. There are easy excuses: many physicians are burnt out, have to see too many patients per day, and get frustrated by patients who don’t “do what they’re told.” But this is unacceptable. We, as physicians, should all do better: NO physician should project his or her frustrations onto the patient. I always assume my patients are taking their medications regularly. However, if I don’t know if my patient is taking their medication or not, it quickly adds a sticky layer

of complexity to figuring out what might be going on. Many medications used to treat lupus suppress the immune system, but also come with a host of other side effects: causing weight gain, swelling, and fatigue. Sometimes lupus medications don’t immediately make a person feel better. Sometimes these medicines treat things that are hard to see, like the kidneys or low blood counts, and even if they DON’T cause unwanted side effects, they don’t necessarily make a person feel better at all! I can understand why it’s hard to want to take a medicine that doesn’t feel like it’s doing anything! This article touches on some of the most common issues and concerns I see that occur with my patients. Below are some tips to keep in mind as you (or a loved one with lupus) approach lupus care with your rheumatologist and primary care physician.

Why Patients Come to the Doctor

Through my years of practicing, I have figured out that patients come to me for three main reasons: 1. Patients want to feel better. They just want help with something that’s going on with their

body that doesn’t seem normal. 2. Patients want to put a name on the symptoms they are having, i.e. they want a name for the disease or things that are affecting them (or they want to know if it’s normal!).

3. Patients want more information about the disease that someone diagnosed them with. Sometimes patients have a combination of desires when they come. Sometimes patients don’t even know why they come! They present at the behest of their spouse, parent, or child. I need to try to figure this out as the encounter will go very differently; this sets the tone for what you are trying to accomplish. However, it’s best if you think about this and just tell your physician!

Understanding the Medical Pie (Which Piece? A Small Pie?!)

In the old days, a person had a GP (general practitioner) who took care of all their needs, delivered their family’s babies, and maybe did surgery when needed! Now, medical care has expanded and we know so much more than we did even 2-3 decades ago. Every person should have a primary care physician (family practice, internal medicine, geriatrician, gynecologist) who can ‘quarterback’ all of

his or her medical issues. In today’s medicine, lupus scares many primary care providers because it can present in many ways. I like to think of all medicine as a pie; primary care providers take care of a small pie (but the whole thing); rheumatologists take care of lupus and other autoimmune conditions (a small slice of the pie but we know a lot MORE about that slice than anyone else). I think it’s normal to have difficulty navigating the system: “Why does my lupus doctor care about my blood pressure? Should I ask my primary care doctor about my vaginal itch? Or my rheumatologist?” I think it’s perfectly ok to ask, ‘Is this issue for my rheumatologist or my primary care doc?’ at your visit, through MyChart, or on a nurse call as you learn to navigate our complex medical system throughout your journey.

Appointments with Shared Agenda

Sometimes a patient is very sick and there is an immediate need for me to address a concern that may be organ-threatening (i.e. their kidneys are starting to fail and the window for treatment is ending). And at the same time, maybe this issue is not very important to the patient. What may be important to them may be something completely different than what is important to me as a clinician. I need to figure this out and try to meet the patient halfway. At least address their concern and yet make sure my concern is addressed, especially if there is a closing window (like with the kidneys). Sometimes it is frustrating to the patient that I want to address something that they don’t find important. I try to convey this to my patient when I am stressing the

importance of tests that have to be done now or treatment decisions that need to be made immediately. I know this can be frustrating. If you aren’t sure about the importance of something your doctor is asking you to do, just ask “Can this wait a few weeks? Do we have to decide today?”

Shame and Honesty

I’ve had many patients tell me that prior physicians have made them feel shameful about being honest. I remember a patient who told me her first doctor said, “If you don’t take the medication, you’ll break a bone in the next one to two years.” She had such anxiety and shame for being indecisive about whether to take medication for her osteoporosis. She didn’t go back to that doctor nor see another about her condition for years. No doctor (or nurse, or anybody really, except God!) knows the future! I was so mad hearing that story and how that “healer” made this person feel like this. You do not have to accept this kind of behavior. Healthcare today makes our encounters very brief; the physician who doesn’t know the whole story is passing judgment in a situation in which he or she has not walked. Do not tolerate this. Always be honest but remember physicians are humans. We make mistakes and if one makes you feel embarrassed rather than being empathetic to your journey, consider a second opinion.

I

Need

to Know Right Now:

MyChart (Immediate Access) Now, with MyChart and other secure healthcare email platforms, we have immediate access to our doctors at any given moment. We have to learn to balance asking our doctor about every concern that

bothers us and immediate access which can lead to physician burnout. I have seen this in my practice: when a patient knows I am very accessible on MyChart, sometimes I receive three or four messages in the same day and multiple messages in the same week all from the same patient. Like all physicians, I am only human, and unfortunately, this becomes a ‘boy who cried wolf’ situation. I see the name and I know that message is probably one of many tiny, small concerns and not something very important to this patient’s health.

As physicians, we learn to triage with levels of importance: learn to trust your gut. Most healthcare systems and even private offices have a triage nurse (a nurse who takes calls and helps review concerns by phone to decide does the patient needs to go to the emergency room or urgent care, or can the issue wait until the doctor gives non-urgent advice over the phone versus wait until the next visit. Some concerns that should prompt a phone call to the office and nurse triage: are blood in the urine, fever (especially on immune-suppressing medications), pus, new chest pain, or shortness of breath. Some issues of lesser importance that might be better managed through MyChart would be a new rash, a new symptom that you are unsure of is related to your lupus, and questions regarding medication. Often patients want to know what my assessment of the laboratory tests is after a visit- I try to emphasize that if laboratory test results change the treatment plan, my team will reach out. Most physicians review 50-100 laboratory results daily and are unable to reach out about each result, especially those that

won’t change disease management. If there are questions about test results, MyChart might be ok; or waiting until the next visit to review the results together with a discussion. Consider making a full list of concerns to bring to the next visit. Only reach out if a symptom question or concern needs to be addressed before the next visit. We trust you know what’s going on with your body!

For a Limited Time Only!

Many patients are unaware that in today’s healthcare systems, most doctors don’t get more than 20 minutes with their patient (and that includes time to check in with the medical assistant and review medicines, check blood pressure, weight, etc.). That’s a very short period to talk about their issues, uncover fears, and dig into deep subjects (all while building rapport and trust). I might have to see a patient for 4-5 visits over a year before I even spend a total of two hours with them alone. Bringing a list of your top concerns can help narrow down your issues and make the most of your visits.

Giving Up on Medicine Too Early; Documenting Intolerance

Today in America in 2024, we have

endless possibilities. We scroll through Amazon, Etsy, and Temu, and the scrolling never stops. We think this is true of medications. ‘This medicine has side effects that I can’t tolerate so we’ll find another one.’ Unfortunately, we have a very finite number of medicine options that we can use to treat lupus. I wish we had endless options to go through, however, there are probably under 20 different medications, and depending on the type of lupus, it might be only limited to 10 or less. This has changed dramatically over the last two decades, but we are still not in a position where we can give up on some of our lupus medications. If medication compliance is a problem for you, if you are experiencing side effects that you think are related to the medicine, don’t just stop taking it. Talk to your doctor about what you think might be happening. Sometimes, how you take a medicine or add another medicine to help offset any side effects can help tolerability. For example, mycophenolate, a commonly used medication for lupus kidney disease, can often give patients an upset stomach, nausea, or diarrhea. Sometimes a patient can tolerate the symptoms by starting with a very low dose and

slowly increasing. Sometimes that doesn’t work, but moving toward a specialized coated version (more expensive, called mycophenolic acid) can help. It’s important to convince the insurance company that this is necessary so that they will pay for it. If I don’t hear from the patient that they are having trouble with it, and the patient just stops taking it, I might assume the drug has failed to help his or her lupus. If a doctor doesn’t document drug failure, sometimes this creates barriers to newer or more expensive drugs.

Things to Consider for Organizing Thoughts and Issues About Lupus:

#1. Trust your doctor: This might come with weeks, months, or even years of working with a single physician or team who works well together with you. It might not come easily, but if you don’t feel that you can truly bring up your concerns regarding your physical, emotional, and mental health, that doctor might not be the right one for you. Many of us did not find our partner or spouse on our very first date. I wouldn’t recommend doctor shopping, but if you don’t trust the one you have, ask yourself ‘why?’ and dig deep. Sometimes

we need different doctors for different times in our journeys- we have to have a good gut feeling about the relationship and have good lines of communication to maintain healthy trust.

#2. Be organized with your lupus medication (actually all of your medication!); consider bringing all medication bottles to your appointments, or better yet: bring an updated list to every visit. If your doctor is asking about the name of the medication, and you just know you take the little purple pill that makes you feel sick, if you are not talking about the same thing, there will be miscommunication! Trust me- your doctor has no idea what color each medicine is!

#3. Consider medication boxes or a pill-packer pharmacy: many lupus patients require more than one medication. A pill box that helps dispense a week of medication and divides things into morning and evening doses (or more) can help simplify things. Some pharmacies (like Pill Packer or AccupacRx) will package them for youthis is called “MOT” medication on time (sometimes without a fee, sometimes for a fee). This makes it a little more complicated to know which pill is for what and when medication is changed. However, it might be easier for patients who

take a lot of medication and don’t have the time to organize a medication box themselves.

#4. Be informed about your medications: the more you know about your disease, the better! Knowing exactly what your medicine does to help your lupus may help you remember its importance and probably make it easier to take and tolerate any unwanted side effects. If a person is taking lisinopril for lupus, but doesn’t feel any different, it’s not easy to remember or want to take it. But, if I explain to you, “This lisinopril helps your kidneys hold on to protein and stay strong against lupus hurting the kidney,” it might be easier to remember to take it and WANT to take it- to protect those kidneys! On your medication list- note this: i.e. lisinopril- med for lupus in the kidneys.

#5. Sometimes patients come to me, embarrassed that they have a paper of written or even typed concerns and questions. I love it when they come so organized! I know that they have thought about these issues for a long time and even spent time researching books or on the Internet. Sometimes these are patient visits when I don’t necessarily make the most changes to treatment regimens, but I can help the patient the most!

Answering questions and hearing what the patient is concerned about helps a person on their journey more than making medication adjustments, which might fall to the wayside if a person doesn’t understand the importance of what is going on.

#6. Consider a lupus journal: I’m a big fan of journaling for mental health, something amazing happens to an anxious thought when the brain puts that worry on paper. This doesn’t necessarily need to be a daily thing, but writing down issues on the calendar when a symptom starts or you notice a change in how you are feeling, can help give a better history of what’s going on with your body. The next visit with your doctor when you have drawn up your list of questions and concerns, go back to your journal so you can say exactly when something started or how long it’s been going on. This will give your lupus doctor a better history. [There’s a secret kept in medical school: 80% of problems can be figured out with history and physical exam (the story the patient tells and maybe what we see on the body in the clinic.) We don’t even need blood tests, x-rays, or CAT scans to figure the rest out! The better the history a patient can give, the easier it is for the doctor to figure out what is going on!]