This is Episode Two of “Autoimmune Disease: Pieces of the Picture,” a Chair’s Corner podcast series. Dr. Ron Falk and Dr. Patrick Nachman talk about the process of getting diagnosed with an autoimmune disease and what can help people get through this. Dr. Nachman sees patients who have vasculitis and other diseases that affect the kidney; he is a Marion Stedman Covington Distinguished Professor of Medicine in the University of North Carolina Division of Nephrology.
“Remember that you cannot do this alone. It’s very important to engage a confidante, a family member, a friend, a neighbor, who will walk this road with you.”
– Patrick Nachman, MD
Falk: Hello, and welcome to the Chair’s Corner from the Department of Medicine at the University of North Carolina. This is our new series where we explore topics related to autoimmune disease. Our goal is to help patients and their loved ones understand and manage their condition.
In our first episode Meghan Free explained the science of autoimmunity. In today’s episode we want to talk about how autoimmune disease is diagnosed, how patients and their physicians get through the process from diagnosis to treatment to managing the autoimmune condition. I can think of no one better to answer the question of, “How do patients with autoimmune disease actually get diagnosed?” than Dr. Patrick Nachman, who is a Marion Stedman Covington Distinguished Professor of Medicine in the University of North Carolina Division of Nephrology. He sees a large number of patients with autoimmune disease each and every week of his life. Welcome, Patrick Nachman.
Nachman: Thank you very much for having me.
Putting the pieces together
Falk: A patient has otherwise been completely healthy, feels well, and then starts to have what are described as nonspecific feelings of, “I’m not feeling well.” They go to a doctor or a nurse practitioner, and ask the question, “What is wrong with me?” The person doesn’t have a clear diagnosis yet, and the doctor starts to suspect some sort of process that’s either an infection, or an autoimmune disease, or at times one worries about it being a cancer – how does the physician/patient interaction help with the initial possibility that a patient’s illness is an autoimmune process?
Nachman: This is actually not an easy process, and it’s not uncommon for patients to see several physicians before the diagnosis is finally made. Part of it is that, as you mentioned, the initial presentation can be nonspecific, relatively vague, or may be suggestive of common illnesses or infections, such as a sinusitis or even a urinary tract infection. I think that the story comes together when the patient and the physician recognize that there are multiple symptoms going on. At first sight or first encounter, it’s not clear that these various symptoms are related.
So I think that it’s important for patients, when they encounter their physician, to really mention everything that they feel, and not assume that what they’re feeling is unrelated to their chief complaint. So if one has sinusitis, or an ear infection, and sees a physician for that because that’s what’s on their mind the first day, don’t worry about mentioning that you also have a rash, or that you also have joint pain – it’s just putting all of these pieces of the puzzle together, that clues in the physician that there’s something affecting the entire body, not just the sinuses or the joints going on. When these various pieces of the puzzle are put on the table, you realize that you’re dealing with a bigger picture that needs to be put together, and start the workup to think about what might be going on in the entire body.
Falk: In fact, it’s not just at the moment in time, that the patient see the physician. Diseases such as multiple sclerosis, there may have been episodes that are in the past that have had neurological symptoms that people couldn’t put together, so in many autoimmune diseases, it’s not just the current history, it’s also the past history that helps put things together. So what you’re suggesting is that patients, really, before they go see the physician, write down all of their symptoms and maybe write down things that have happened to them in the past.
Nachman: Right, and not be shy about mentioning it. Sometimes we have patients that come back and say, “Well, I didn’t mention it because I didn’t think that it was relevant.” Well, don’t worry about that. Mention it – if it’s not relevant, so be it. But at least you’ve shared this with the physician and it helps the physician put two and two together and connect the dots.
Falk: What kind of physician should a patient with an autoimmune disease see? You said the individual may have seen several physicians before they get a diagnosis. Where to start, and then, who to migrate to over the course of time?
Nachman: Your primary care physician is always a good place to start. Several patients end up seeing specialists of various kinds. Lung specialists, Ear, Nose and Throat, or neurologist…Again, what helps get to the diagnosis is making each physician aware of what else might be going on in the patient’s life: what other symptoms are going on, what other physicians you have seen. The diagnosis ends up being made by any variety of physicians. Usually by trying to bring all of these sources of information together and bringing them into a synthetic whole, so to speak.
I want to say that more and more, we realize and we recognize that the diagnosis and the care of patients with autoimmune disease is not a single physician process, but it’s a team of physicians, nurses, specialists, subspecialists, pharmacists working together to take care of the patient, each one with their own expertise. I also think it’s important that a patient establishes a very good rapport with at least one physician that will take the lead and coordinate the care and coordinate the various specialists so that the care is not fragmented but really fits a comprehensive and coordinated whole.
Falk: One chief chef, not multiple cooks.
Nachman: Right. And the chef, as Celeste Lee mentioned, has to be the patient. So the patient and physician is really a collaborative work to address the problem. One cannot do it on his or her own.
Falk: The patient’s in the driver’s seat. Physicians are really in the passenger seat trying to make sure that the driver is able to stay on the road.
Dealing with an uncertain diagnosis
Sometimes getting a diagnosis is a very long process because autoimmune diseases can relapse and remit by themselves. Sometimes patients can be ill for a longer period of time without knowing precisely what’s happened. What would you recommend to a patient who’s going through this uncertain time when you may have seen the patient and said, “Well I think you have an autoimmune disease, I don’t know exactly which one. You’re not really ready to start therapy.” But yet the patient’s not feeling well. What recommendations do you have?
Nachman: It’s difficult to come up with a single recommendation. But if I were to choose one, I would say, “Remember that you cannot do this alone.” It’s very important to engage a confidante, a family member, a friend, a neighbor, that will walk this road with you. Ideally be with you at all the physician appointments. When a patient is not feeling well, it’s easy to get distracted, forget questions, forget the answers. Having an extra pair of ears, and a second mind with you in the room is exceedingly helpful. Not only for you, but for the physician, because your friend or family member can help direct the question that you may have shared with them.
Falk: As a matter of fact, sometimes spouses tell physicians much more. If the spouse is the confidante, the spouse tells much more if the patient doesn’t feel well enough to be able to answer or remember those issues.
Nachman: You mentioned also, earlier, writing down the questions ahead of time. Bring that list with you to the clinic visit. You may not get all your answers in one sitting, but at least it will help you keep track of what you want to ask and what you’re worried about. No question is too silly, no question is too simple. Share your concerns. If you are afraid about something, mention it, because sometimes it’s a matter of being reassured that your fears are not justified. It helps the physician and the care team address what really is on your mind, and that is the most important thing.
Searching the web for answers
Falk: When patients have a cluster of symptoms that may be confusing to a primary care person or to a specialist, the tendency is to immediately go to a search engine on the Internet, and try to make the diagnosis oneself. And when one’s out there searching for information on the web, there are all sorts of personal experiences, people sharing their thoughts about disease and treatment, there are commercial sources trying to push one product or another. What’s your advice to patients and the patient’s confidante, how to get the best information from these sources?
Nachman: The Internet is full of information. My discussion with patients about this has been mixed. Some people find very useful information, but there is a lot of incorrect information and sometimes the information is downright scary to patients. It’s also important to remember that these diseases are not uniform. Two patients with the same diagnosis may have very different manifestations of disease, and what you might read on the Internet about the disease that carries the same name might not apply to you as an individual patient.
What I do suggest to my patients is to go to sites that are well-vetted. Go to sites of patient advocacy groups, for example, rather than individual sites. Sites where patients and physicians have written information in a well-written but also edited and corrected way. I think that the patient advocacy groups are always a very good source of information. In the groups of diseases that I deal with, for example, the Vasculitis Foundation, they have a web site, local chapters with patients, and they provide very good information. They can also direct you to physicians who have expertise in the disease affecting you. I think that some of the future podcasts are going to be about lupus – the Lupus Foundation has a lot of information. For patients with kidney disease, the UNC Kidney Center has information online that one can access, the National Kidney Foundation has a lot of information online. These sources are far more reliable and accurate than random web sites.
When patients blame themselves for causing the disease
Falk: The patient has had a healthy, normal life, and is now faced with this possibility of having an autoimmune disease. I think the question that most of us get is, “What caused my disease? Did some behavior of mine cause this autoimmune process to unfold?” How do you respond to a patient who says, “Did I do this to myself?”
Nachman: I think the answer is simple here. You did not do this to yourself. I don’t think there is any reason that a patient should feel guilty or ashamed or worried that this is something that they brought on to themselves. Autoimmune disease is a complex disease. We don’t fully understand what caused this. But we do know that this is not something that patients have caused in any way. So there’s really nothing that a patient should feel that somehow they’re guilty about bringing this to themselves.
Falk: As a matter of fact, if a patient had done something that induced the disease, we would know what caused these autoimmune diseases and then we would be able to answer the question. The reality is we don’t know what caused the vast majority of autoimmune diseases. So it’s highly unlikely that a patient would have any ability to actually cause the disease themselves.
Nachman: Yes, this is not a time for self-blame. The focus must entirely be on management, treatment going forward.
A few things that can help patients improve their outcomes
Falk: You talked about a prior podcast from Celeste Lee who talked about patient advocacy. And really, patients who have been successful managing their diseases and take care of themselves really have learned a number of very important lessons. What are some of these factors that result in success? With all the patients you’ve taken care of, what have you learned from them that teach you how to help other patients improve their outcomes?
Nachman: I want to come back to the idea of not walking the road alone – bringing a confidante with you to clinic, keeping track of your care, of the plan, of the management. Quite honestly things as simple as the schedule of treatments and medication is very helpful. Write it down. As much as we love to hate or hate to love our new electronic medical record system, the big advantage that I see with that is the communication has improved and we now have an easy way of writing instructions and sharing it with patients and family. The more the patients does that, or the patient and their support at home does that, the better.
Celeste talks about being in the driver’s seat. I think the patient must be in the driver’s seat but may not be able to drive themselves, so accepting help is very important. Again this is not a time to be shy. Seek help and accept it. I honestly, truly believe that being engaged in patient advocacy group is incredibly helpful, not only for the individual patient themselves, but for their families to understand what’s going on. But also to the medical community in helping all of us get a better handle on what causes the disease and how best to treat it.
I think that considering participating in clinical studies or clinical trials is a good idea. I don’t want to sound self-serving about this, but clinical studies are very well thought of, vetted at a physician level, at an institution level, by the ethics committee and also at the FDA level who reviews everything we do. What clinical trials do is give the physician a path forward when the treatment is not obvious. It gives the patient a path forward, and it also gives the patients access to a group of coordinators, nurses, pharmacists, who are overlooking and following that treatment very, very carefully in ways that is an incredible support system. So if you as a patient feel that this is something that you’re comfortable with, ask about it and try to participate in these things. Again the patient advocacy groups are a great resource to learn about what’s being done, where the expertise is, and what are the new treatments being evaluated. Sometimes the treatments are not new – sometimes they are old medications, but we’re learning how to use them better, more judiciously, how to minimize the side effect profile. This source of information is incredibly helpful in moving the field forward for better treatments.
Falk: If we could sum up what you’ve just said, if a patient has an autoimmune disease, the whole family and the whole support system then participates in the care of the autoimmune process.
Thank you, Dr. Nachman. And thanks to our listeners for tuning in. If you enjoy this series, you can subscribe to the Chair’s Corner on iTunes or like us on FaceBook so you’ll know when we post our next episode. Thanks so much for listening.
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