Carl Maronich (Host): Welcome to Jamaica Hospital Med Talk, the podcast of Jamaica Hospital Medical Center. I'm Carl Maronich. And joining me today is Dr. Amir Barkhodari, a rheumatologist with Medisys Health Network, Jamaica Hospital Medical Center. And today, we're going to be talking about lupus, a complex autoimmune disease that impacts many lives. Doctor, welcome to the podcast.

Dr. Amir Barkhodari: Hello, Carl. Thank you for having me here.

Host: Yeah. And we're going to be talking about lupus. So, maybe let's start with just a definition of what lupus is and what impact it has on the body.

Dr. Amir Barkhodari: So actually, I wanted to start with the meaning of the word lupus. The word lupus means wolf in Latin. So back in the 13th century, the doctors noticed that the patients with lupus have facial markings, a facial rash that resembles the wolf bite or a wolf facial marking. So, that's how the disease got its name.

 And then, what we know right now is that lupus, as you said, is a complex disease. It's an autoimmune disease with chronic inflammation involving different organs and different parts of the body. When we usually talk about lupus, we refer it to the main form, which is the systemic lupus erythematosus, or SLE.

This form of lupus is a chronic heterogenous systemic autoimmune disease. It's chronic because it tends to last for a long time, often for life. It's systemic. It means that it can affect many different parts of the body. And it's autoimmune, which means that the immune system-- instead of only fighting with the germs, bacteria, infections, viruses, mistakenly-- attacks the body's own healthy tissues and organs

Overall, lupus is a rare disease. in the United States, we have about 1.5 million people living with some form of lupus. And out of those, roughly about 200,000 have confirmed systemic lupus erythematosus, which is the main form of lupus.

Host: Yeah. And, Doctor, does it affect men and women equally?

Dr. Amir Barkhodari: No. No. There are many different risk factors that can make someone prone to be more at risk of lupus that we are going to go over them very soon.

Host: Yeah. And how does it manifest, if you will, in or present in patients that are developing lupus?

Dr. Amir Barkhodari: So, there are different symptoms. It depends, some patients may have mild disease with very non-specific symptoms. Some of the patients have very, very severe, complicated symptoms involving multiple organs and even sometimes life-threatening organs. So, it's one disease, but with different manifestations, individual, everybody's different. And it's a very complex disease as we discussed.

Host: So initially, a patient may be feeling some kind of way, they are likely going to start with their primary care physician who might pick up on some of these things and, ultimately, refer them to you, A rheumatologist. Is that how the process would go?

Dr. Amir Barkhodari: Correct. Yes. Usually, the patients would definitely reach out to the primary care physicians with many different symptoms and complaints. And usually, the primary care providers screen them. And if they have suspicion for autoimmune diseases including lupus, there are some initial tests that they can start with, or they will refer the patient to their rheumatologist who's a specialist that deals with this type of diseases. And based on the symptoms, the labs, the presentation as we discussed, the sex, the female or male, the age. We can put all these information next to each other and come up with the possibility of lupus.

Host: Yeah. Well, Doctor, maybe we could talk a little bit about the signs and symptoms and how it might develop in a patient.

Dr. Amir Barkhodari: When we talk about the systemic lupus as we discussed, so we are talking about a disease that can affect almost any part of the body, and it can look very different from one person to another. Some features are very typical to lupus, but many are even not specific. So, that's why it's very hard to diagnose even for some of the clinicians, including the rheumatologists.

So overall, the general symptoms are feeling unwell, fatigue, low-grade fever, loss of appetite, and weight loss; and skin and mucus membrane involvement like rashes on the body, on the face, areas with the sun exposure and recurrent sores in the mouth and nose. And also joint involvement, including the joint pain, joint swelling. Beyond that, systemic lupus can involve the major internal organs, which can be the kidneys, can be the nervous system, lungs, heart and gastrointestinal tracts. Some people might have very mild disease, as I said, and some may have the life-threatening problems.

Host: Yeah. Very, very widespread in terms of the symptoms and on all that you talked about. So, as you also said, it may manifest very differently in different patients, which I'm guessing, would make treatment a bit challenging.

Dr. Amir Barkhodari: Absolutely, yes. We always say that it's the same disease, but it can look very different in each person. Regarding the treatment, there are many options that we can use. Again, it depends what are the presentation, what's the severity of the disease. Unfortunately, there is no cure for lupus. And the main goal is to calm down the overactive immune system so the immune system would not continue attacking the body and it would prevent long-term damages.

Regarding the medications, we do have corticosteroids, something like prednisone, that it can quickly reduce the inflammation. And we usually use as a lowest effective dose and as short time as possible. The next medication that we can use is the hydroxychloroquine, which is the cornerstone medication for lupus. Almost most of the patients with confirmed lupus disease would be on hydroxychloroquine. It helps to reduce the flares, improve the skin and joint symptoms. We do have other immunosuppressive and biologic medications that it depends on the severity of the disease, which organ is involved, and we can use them to control the disease.

Host: So as you mentioned, there's really no cure for systemic lupus. So, this is something someone may be living with for life. How over the course of time do they manage that disease?

Dr. Amir Barkhodari: The most important thing is to understand that lupus is a chronic, lifelong disease. It requires a long-term partnership between a patient and a healthcare team. So, ongoing monitoring is very important. We regularly check the disease activity. We watch carefully for any new organ involvement through the symptoms, physical exam, blood and urine tests. And that helps us to adjust the treatment early before a significant damage occurs.

So, my recommendation for self-management strategies beyond the medication care is that protecting skin from sun exposure is very important. So, I would recommend patients wear, sunscreen SPF 30 or above and protective clothing and avoiding peak sun hours from 10:00 AM to 3:00 PM. Getting adequate rest, rest is very important for immune system. Exercising regularly and eating healthy.

Host: Doctor, because it's an autoimmune disease, I would guess that patients with lupus may also be susceptible to other things, which would mean they'd have to be careful regarding other potential diseases and such. Is that something that is an issue for lupus patients?

Dr. Amir Barkhodari: So, we always have overlap diseases. The autoimmune diseases is a spectrum of diseases that patients may present with different symptoms. And when the rheumatologists put them together, they can come up with the diagnosis of these autoimmune diseases like lupus. But some of the lupus patients may have features of the other diseases like Sjogren's syndrome, like rheumatoid arthritis, like systemic sclerosis. And again, based on the symptoms, we will define the disease we sometimes call it the lupus, sometimes we call the patient has lupus with overlap syndrome. But again, as I said, every patient has a different presentation. And the treatment also would be the different based on the presentations.

Host: For individuals who may have a family member that has lupus; and therefore, they're close to their family and they maybe even some forms a caregiver, what recommendations would you make to them?

Dr. Amir Barkhodari: If you want to talk about the risk factors, I have to mention that, as we know, women are the majority of the lupus patients. So, 90% of the patients with lupus are women, and in the child-bearing ages from age 15 to 45. And some ethnicities also are more at-risk of getting lupus like non-Hispanic Blacks, Hispanics, Asians, and native Americans compared to the white population.

As you said, the family history, the family history of lupus or any other autoimmune disease increased the risk, but not everyone who has a family member of lupus would get the disease. It is not inherited. Basically, as I said, it is a heterogeneous disease. There are many, many different factors that play a role for someone who's susceptible genetically to end up getting lupus.

Host: Yeah. A lot of great information. Dr. Barkhodari, thanks so much for joining us today. Any you want to mention to folks who may be listening and who are battling or have a family member that has lupus?

Dr. Amir Barkhodari: Absolutely. I would like to emphasize that any patient with lupus should have a close partnership and close follow-up with the rheumatologist to make sure that the disease is controlled. This is a chronic disease that might have very silent continuous damages and joint and organ involvement without having any symptoms in a real life. And the doctors, the rheumatologists have to do many tests to find out that everything is quiet and controlled. So, the close partnership with the rheumatologist and the primary care doctor would be the best recommendation that I have for the lupus patients.

Host: Dr. Amir Barkhodari, thank you so much for joining us and, again, sharing all that very helpful important information.

Dr. Amir Barkhodari: That was my pleasure. Thank you so much for having me.

Carl Maronich (Host): For more information about the services Jamaica Hospital offers, visit our website at jamaicahospital.org/podcast. If you enjoyed this podcast, please share it on your social channels and check out our entire podcast library for topics of interest to you. I'm Carl Maronich, and this is Jamaica Hospital Med Talk. Thanks for listening.

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