Did you know that lupus nephritis affects up to 60% of lupus patients, making kidney health a crucial area of focus for those living with lupus? In our Live Expert Session “Lupus and Kidney Health” with Chief of Rheumatology at UCI School of Medicine, Dr. Sheetal Desai, we answer our community’s top-asked questions around lupus and the kidneys! Watch below to explore how lupus can impact your kidneys and learn proactive ways to manage your health:

 

Live Expert Session Transcript: Lupus and the Kidneys

Moderator: Hi, everyone! Welcome to today’s live expert session, lupus and kidney health, with our friend and chief of rheumatology at UCI School of Medicine, Doctor Sheetal Desai. In this session, Doctor Desai is going to answer our community’s top asked questions around kidney health, and we’ll explore how lupus can impact your kidneys and learn proactive ways to manage your health.

If you have any questions during the session, please drop them in the comments below or we’ll be watching. Or send us a direct message and we’ll ask your question anonymously. , we’re all set to get started. Doctor Desai, if you want to tell us a little bit about you.

Dr. Sheetal Desai: Yes, thank you so much. I want to thank Lupus LA and the entire lupus community for attending this very important talk on lupus and the kidneys. My name is Sheathel Desai. I am a rheumatologist. I practice out of the University of California, Irvine in Orange County. I trained at USC for med school, did my residency and fellowship at UCLA under one of the huge heads in lupus research.

Doctor Bevra Hahn and I joined UCI in 2007. I started the Lupus clinic in 2012, and I’m currently chief of the division of rheumatology here at UCI. When they approached me to do this talk, I was elated, because this is an area that I actually focus on. Our clinic is a multispecialty clinic with rheumatology and nephrology side by side, which is a very unique clinic here on the west coast. And I think talking about kidney health is so important. The way I organized this talk is I took the questions that Lupus LA provided me, that you all provided Lupus LA, and I organized the talk around the questions. I will try to finish this in about 15 minutes, then I will leave the last five to ten minutes open for question and answer.

The first question that had come in was, the kidneys, what do they do? I just want everyone to know. The kidneys are one of the vital organs in our body. A lot of people consider after, of course, the brain, the heart, the lungs, and the kidneys as, ah, some of the most vital organs in the bodies. They come as a pair. So we have two kidneys, usually in the. In our lower back region is where they sit, and they’re extremely important for filtering our blood at any given time. While we are all kind of going about our day, our blood is being filtered through the kidneys, where the kidneys absorb things back into the blood that we want, like protein, and they get rid of things that we do not want, like waste or excess fluid, and they get rid of it into the urine.

So that is what the kidneys are and what they do. Next question was, how does lupus mess with your kidneys? And I just want you all to know, this is verbatim the questions that came into me. So when we talk about. Let’s step back a little bit. When we talk about lupus. Lupus is an autoimmune condition, which means that person’s immune system is now not just attacking foreign invaders like viruses or bacteria. That person’s immune system, for some reason, has been set off to begin attacking themselves. So when lupus attacks the skin, that will cause a malar rash or rashes on your skin.

When lupus attacks the hair, that can cause hair loss. When lupus attacks the joints, that can actually cause joint pain. And when lupus inappropriately, attacks the kidneys. So the immune system is somehow supposed set to off to attack the kidneys. It will go in, cause inflammation in the kidneys, that will mess up with the normal filtration process that the kidneys do. And that is called lupus nephritis. Nephritis is just the fancy medical term for involvement of the kidneys. You can imagine if I told you the kidneys are super important for filtrating your blood and keeping all the good things in, like the protein and getting rid of the excess waste and excess fluid.

When the immune system is going in and attacking the kidneys and causing inflammation, all of a sudden the kidneys aren’t working normally, and the protein that it would normally keep in the blood, it actually lets it out, and you’ll get increased amounts of protein in your urine, just as an example. Next question is, how common is lupus nephritis in people that actually have lupus? I want you all to know that overall, it affects about 50% of lupus patients. Where I practice in north Orange county, predominantly, I see minorities, I see a lot of hispanic patients, a lot of asian patients.

I just want everyone to know that our minority patients are those that are at the highest risk of developing lupus nephritis when compared to caucasian patients. Overall, one out of every two patients with lupus will develop kidney involvement over time. It tends to occur really early on. We usually say about a third to half of patients, if they’re going to get kidney involvement, will get it within the first year. And three fourths of people that are going to get kidney involvement will get it within the first couple of years of having lupus. And usually most people, if they’re going to get kidney involvement, will get it within the first five years. It’s really uncommon to get lupus. Kidney involvement after five years of having lupus, it can happen, but it’s pretty uncommon.

So like I said, most people, when they develop lupus, if they’re going to get kidney involvement, it happens pretty early on, and sometimes they may not even know they have lupus. They might actually present to our nephrologists, who are kidney specialists, initially get diagnosed with lupus, and then they’re actually referred to us. I just want you to be aware that a third of you may actually present to nephrologists and the majority of people that are going to get kidney involvement. It will happen pretty early in the course of the condition. Then people are asking is, what are the risk factors for developing kidney involvement?

Well, one is obviously having lupus because half of all lupus patients may get kidney involvement. Another risk factor is being a minority. So it’s anything aside from caucasian, we have higher risks of lupus nephritis and our black patient populations, and our hispanic Latinx patient populations, and our american indian and alaskan native patient populations and our asian populations. So all of them have a higher risk of developing lupus nephritis compared to our caucasian lupus patient population. Then we all know lupus is much more common in females than it is in males. The ratio kind of approaches nine to one for every nine women that we diagnose with lupus.

We diagnose one male with lupus between when people start having their periods and when they menopause. But men actually have a higher risk of lupus nephritis or lupus kidney involvement when they develop lupus. I just want everyone to be aware of that this risk is quite elevated. It’s so important to follow up with your rheumatologist or your nephrologist so they can actually do regular screening for lupus nephritis.

That brings me to the next question you all asked, is, what are the symptoms of lupus nephritis? I want you all to be aware that in most patients, it’s actually silent. Most people will not know they have lupus nephritis, which is why it’s so important to follow up with your doctors. What we do every visit is blood work and urine testing. And between the two of those, that will actually key us in if there’s something we’re concerned about. In the kidneys. Sometimes patients can tell me if they have a lot of protein, their spin spilling in the kidneys, which is the top finding of lupus nephritis. Sometimes patients will tell us that they notice bubbles in the urine or a foamy appearance of the urine. That is a sign that there’s a lot of protein that they’re actually spilling in the urine. I want everyone to know that usually lupus involvement of the kidneys or lupus nephritis is quite silent.

In later stages, when it gets really aggressive, people might notice swelling in the legs, they might actually notice swelling all over. , they might also have high blood pressure. Those are later stages and much more severe stages. I just want to give you an example. Over the years, I’ve been now practicing at UC Irvine for about 17 years. And over the years, I’ll get young people that follow up with me, and for whatever reason, for a period of time, they’ll stop following up to clinic. Either they feel good, life just gets in the way, they get snow, and they think, you know what? I’m doing good. I don’t need a follow up with Doctor Desai. And then sometimes what happens is I see them in the emergency room a year, two, three years later, and that’s when they’re presenting, because all of a sudden they’re getting wicked swelling in their legs, they’re getting swelling around their eyes, they’re getting swelling in the back, and their blood pressure is sky high, and they have a headache. And that’s when they’re presenting with really full blown lupus involvement of the kidneys that might have been picked up if they were following up in clinic, and we got urines, and then we were able to treat that before it got crazy. So I try to educate all of our patients in lupus clinic that lupus nephritis is silent, even if you don’t have it right now, it is so important to continue to get blood work, get urine studies, and follow up with us or your doctors to make sure we can pick up on it before it surprises any of you.

So, this brings me to the next question you asked is, how would you diagnose lupus nephritis? And I keep checking in on my phone to make sure we’re progressing along well. , so two major ways. You need a urine where you actually give your urine sample to the lab, and they will go ahead and evaluate it, and they’ll look if you have any blood in there, if you have any white blood cells, red blood cells, or if you have protein, and then it’ll be blood work where we can actually measure kidney function through a blood test called creatinine.

So, urinalysis, like I said, we’re really looking for the kidneys excreting things in higher amounts, that it should not be the most important thing being the protein that can also be white blood cells and red blood cells as well. And then in the blood, we’re looking at the creatinine. So, just to give you an idea, creatinine is a breakdown product of the muscle. So when our muscles are normally going through periods of growth and breakdown, it will actually break down into creatinine. And the kidneys normally filter most of it out and release it into the urine. But now, if your kidneys are inflamed and it can’t filter out the creatinine, instead of releasing it into the urine, it will actually accumulate in the blood.

So patients creatinine in the blood will go up if their kidneys aren’t working. Patient’s protein in the urine will go up if their kidneys are not working as well. I just wanted to explain what that was. Next question is, when do lupus patients need a kidney biopsy? Usually, we should not be spilling any protein, but for women, our urine samples are not the cleanest sample. So sometimes we’ll get trace amounts of protein that I don’t stress out about. If we start seeing 500 milligrams of protein or more spilling into the urine, at least on two occasions or if the ser creatinine, the blood levels of creatinine, which are normally low, if they are actually going up in the wrong direction, that is when we’ll recommend a kidney biopsy to exactly confirm what we are dealing with.

And so I just want to review. A kidney biopsy is a routine outpatient procedure. It is very safe. Most of our lupus patients, when they have lupus kidney involvement, will not just have one kidney biopsy, but sometimes they’ll have two or three over their period of having active lupus. It’s so important to get the kidney biopsy to class. What kind of lupus inflammation is actually going on? There have been times that I’ve actually had a young female who had lupus and diabetes, and I thought it was lupus inflammation, but when I did the biopsy, it was her diabetes. It had nothing to do with her lupus. So it’s so important to get the biopsy.

If you are spilling a lot of protein to know, do you for sure have lupus? And if so, how active is it and how amenable to treatment is it as well? Is there a way to prevent lupus nephritis?

I thought this was an excellent question that had come through and I want everyone to know that there is a way. It is a medicine commonly used for lupus and I try to recommend it in all of my patients with lupus, unless they can’t tolerate it or they’ve had any problems due to taking it. And that medicine is hydroxychloroquine or plaquenil, depending on what name is on your bottle. It is probably the most important medicine we use for lupus. It helps treat skin rashes, it can help treat joint pain, but when used early on and when our patients are very regular with taking this medicine, it can actually help prevent kidney involvement. So I just want everyone to know, please, plaquenil or hydroxychloroquine to date is the only thing we have in our medication armamentarium that can actually prevent lupus nephritis. Next question is, how do you treat lupus nephritis? I want to break it up into two different phases. One is initial therapy, where we tend to use higher doses of medications to calm the inflammation of the kidney down, and the second phase is maintenance therapy. Once we calm the lupus kidney inflammation down, we keep you on maintenance medications to keep you stable. Initial therapy, which is induction therapy, is usually treatment for the first six to twelve months. Our whole goal is to get the kidney inflammation under control. We give you prednisone. It’s not a medicine I’m a huge fan of, but it works immediately and it works rapidly. And so we will usually use higher doses in the beginning and we’ll try to take them down after we start. The two main medications that we use in this era for lupus nephritis. And it’s either CellCept, which is mycophenolate, mofetil or myfortic, depending on which type of cellcept you’re on, or it’s cyclophosphamide, which is also called Cytoxan.

Those are the two pivotal medicines that, based on each of you, will decide which one is better for you. And then we start paying patients on. And the whole goal is we want to calm the kidneys down. And once we calm the kidneys down and the inflammation is a lot better and we’ve been able to taper the prednisone back down to low doses, then we will go ahead and maintain all of you on cellcept, and that is a medicine that we use for maintenance. It’s a gold standard. There are other medicines like imuran, we can use as well. If for any reason, our patients can be on cellcept or the cellcept doesn’t work and you want to be on it for at least two to three years, because there’s a high relapse rate. Once people are doing good and they’re stable, if they drop the medicine too quickly, their lupus nephritis can come back. And I’ll tell you, I tend to actually keep my patients on this medicine for at least three years or longer because I really want to calm their lupus in the kidney, knees down. And then if they’ve been doing well for a period of time, we can actually consider tapering the cell set.

So then we had another question. Will your kidneys eventually fail if you have lupus nephritis? I’ll tell you, before we have therapy and before we had great medications, yes. If you don’t treat lupus nephritis, and there’s a high likelihood that the inflammation over time will affect the normal filtration process of the kidneys, which then, over a period of time, will result in the kidneys actually getting scarred and stop working. But if you treat lupus nephritis, and we’re very good about following patients, and patients are really good about taking the medications and following up regularly, the majority of patients will not progress to renal failure. I think more recent statistics, statistics are anywhere about up to 20% of patients, despite treatment. If treatment is not enough, they can progress to kidney failure, where they will need dialysis. I want to show you this diagram, because it might actually help everyone understand why lupus nephritis still in 20% of people, or if you don’t treat it, can progress to kidney failure. This blue line is kidney function in normal individuals that don’t have lupus. And as we age, and at the bottom here, you could see this is our age. As we age normally, our kidney function declines very slowly as we age, where if we, by the time we’re 80 and actually closer to 100 and beyond, we might actually be getting into kidney stages where we would have to be thinking about dialysis.

Now, if you take people with lupus who are in the red line and they have one attack of lupus nephritis, when they first present, all of a sudden, that attack and that level of inflammation that they’ve had drops their kidney function now to a much lower level so if you don’t treat patients with lupus nephritis, you can see that they will continue to lose kidney function and they will actually end up on dialysis.

If you treat patients with lupus nephritis aggressively and you really try to get them under control, you can slow that down. But now people with lupus that have had kidney involvement are actually starting a lot lower than people that don’t have kidney involvement, which is why it’s so important to follow them closely over time, because we want to control the kidney inflammation to prevent them from going onto dialysis.

Now, for patients that do end up on dialysis, where I’ve had a good number of them over the last 17 years here at UC Irvine, I just want you to know that kidney transplantation is safe. To do dialysis takes up a lot of time. It’s about two to three times a week. You have to either go into dialysis, or if you have the option of doing peritoneal dialysis at home, you would do that every night at home. So a kidney transplant would really change everyone’s lifestyle and get them off of dialysis. And it’s safe to do. You need to be screened and put on a transplant list. We do transplant here at UC Irvine. There are other places in southern California that does kidney transplants as well. And my colleague, doctor Reddy, will actually be talking about this tomorrow on another facebook live if you’re interested in learning about it. And just so you know, kidney lupus in the kidneys rarely comes back after our patients get kidney transplants.

So just a brief overview of lupus nephritis. Our kidneys are super important and actually filtrating our blood, getting rid of waste, keeping the protein and the creatinine in. And if all of a sudden, we start noticing when you come and get your blood work and urine done about every two to three months, that now, all of a sudden, we’re seeing higher levels of protein being excreted in the urine, about over 500 milligrams, or your blood levels of creatinine, which are normally low, are now high, then we recommend all patients to get a kidney biopsy. We confirm that it’s actually lupus and it’s not something else. , we make sure the lupus is actually active. We start with higher doses of prednisone, either orally or iv. Then we transition patients to either CellCept or Cytoxan. We try to taper the prednisone. And I just want you to know, if we’re not getting enough improvement.

Since 2020 and 2021, we have had a couple of new medications FDA approved for lupus nephrology add on therapy. And so if these medicines aren’t actually controlling our patients, I will add initial medicines, either benlysta or Voclosporin, to actually get my patients under better control. So I just want you to know, and just the key take home points is kidney involvement is super common. One out of every two lupus patients, on average, will develop kidney involvement. In the lupus. It is silent, so you want to make sure you follow up with your doctors. You may not be able to feel kidney inflammation at all. And I’ll say the majority of my patients have no idea unless I do blood work and urinalyses. So you definitely want to have regular monitoring. The best medicine to prevent lupus involvement or inflammation in the kidneys is hydroxychloroquine or plaquenil. And a kidney biopsy is absolutely safe. It is necessary if we’re seeing abnormalities in the kidneys and we want to understand what is going on. And the best initial therapy for lupus, kidney involvement is either CellCept or cyclophosphamide. And it really is important to talk to your doctor to figure out which one is the best agent for you. I will go ahead and stop here. We have about five minutes if we want to open it up to any additional questions that we may have. 

Moderator: Yes, thank you so much for your time, Dr. Desai. This session was very helpful. Thanks for addressing all of our community’s questions. We have live questions coming in as well. The first question is what can you not see on an ultrasound of the kidneys that you can see on a kidney biopsy? What are you looking for to see if the inflammation is related to lupus or something else? I think this is from your comment about diabetes potentially affecting kidney inflammation as well. 

Dr. Desai: So ultrasound. While it’s important, it might just tell you the size of the kidney or if there’s any backup not related to lupus, but it doesn’t tell you what’s going on in the kidney. We get kidney biopsies on all of our patients that actually have signs or symptoms of inflammation. When they do a kidney biopsy, they will remove anywhere from, like, 20 to 30 kidney cells. You have over a million kidney cells, just to give you an idea. So removing ten to 20 or 30 doesn’t cause any problems at all. The pathologist will look at it under a microscope, and they’ll be able to tell based on what they see is the inflammation more blood clot, is the inflammation more diabetic, is the inflammation more consistent with lupus? And then they’ll give us an idea of how active it is, and they’ll let us know if there’s signs of scarring as well.

So, just to give you an example, I have a really sweet young lupus patient who’s been treated for years now, but she still has a ton of protein in her urine. We actually did a second kidney biopsy on her a couple of months ago, and there is no inflammation from lupus. It’s more scar that helped us because now we’re actually decreasing the amount of medicines she’s on if she doesn’t have a lot of lupus activity, just to give you an example. 

Moderator: Wow. Thank you so much. Another question that we just received, this user said, my bladder damaged my kidneys. I have kidney failure with no warning signs. Should patients get bladder ultrasounds in the hospital to check for this preventatively? 

Dr. Sheetal Desai: They usually do. When patients are in the hospital and there’s a multitude of things going on, they actually get a pretty significant workup, which includes not just the kidney biopsy, but it’s a lot of blood work, ultrasounds, and sometimes additional scans.So it depends on a case by case basis. But when people are admitted, if there’s something off that just doesn’t make sense. We do additional imaging as well. So thank you for bringing that up. 

Moderator: But otherwise, it would just be urine analysis and the other items that you already discussed for being preventative.

 Dr. Sheetal Desai: Yes, those are things that are preventative when people come into the clinic at every visit that we get on every patient. Now, if a patient is saying that they’re unable to urinate, they’re not going to the bathroom, things like that would key us into getting additional imaging, like an ultrasound of the bladder.

 Moderator: Okay, that makes sense. Thank you so much for your time, doctor Desai. We really appreciate having you with us. To the community, if you’re just jumping on, send us your questions in either the comments or send us a direct message, and our team will follow up with you! The replay of this talk will stay up on Facebook. You can rewind and re-listen to doctor Desai’s awesome answers to our questions if you missed anything. This will also be available on Lupus LA’s YouTube channel, so you’ll have access to follow. And then tomorrow at 06:00 p.m., Pacific time, we’re going to have kidney transplant specialist doctor Reddy with us to answer all of the community questions that we have around transplant and lupus. So meet us back here at 06:00 p.m. If you’d like to participate in that. 

Dr. Desai: He is awesome. If you are interested, you’ll have a really wonderful educational program. And I just want to let everyone know the most important thing is following up with your doctor. If you do that, they will be able to screen for silent kidney inflammation.

 Moderator: Perfect. Thank you so much, everyone. Have a great rest of the day!