Lupus Guidelines 2025 Save
Monica Richey, ANP, New York, reviews the 2025 ACR lupus guidelines as part of RheumNow's "Mission: APP Partners in Care" campaign during the month of December.
Transcription
Well, hello everyone and welcome to RheumNow. My name is Monica Richie. I am a nurse practitioner with about 20 years of experience in rheumatology. I'm speaking from New York City. Today is minus 4 degrees, so not too cold yet, but we're getting there. I've been practicing at Northwell for the last 10 years. And I'm an independent nurse practitioner. I don't need to share my notes with any of my docs. So there's a lot of us out there, and we just keep growing in rheumatology, which is a great thing to see.
Today we're going to be talking about the 2025 ACR guidelines. Look, I printed it out and I even made notes on it, because it was about time, right? We haven't really had an ACR guideline for a long time. We have different guidelines. We had the EULAR, we also have Chinese guidelines and PANLAR. But for us here in the United States, it's been a while since we had specific guidelines. And the great thing about the ACR guidelines is it almost reminds me of the GRAPPA guidelines because it actually goes by body system, right? So each one has its own guidelines.
There are a couple of limitations in the guidelines. Obviously lupus being a complex disease, it's not possible to cover everything. But whatever is not covered in the lupus guidelines you can find in the other guidelines. So I highly recommend you actually Google — the Chinese guideline, for example, has a lot on vaccines.
So let's start a little bit about the ACR guidelines. The core philosophy of the ACR guidelines is treat-to-target, right? We talk about treat-to-target in other diseases, but now we're talking about treat-to-target in lupus, which is very exciting. Shared decision making — because if you make that decision alone, most likely your patient is not going to take that medication, so you have to take it into consideration. And also it's a great push for steroid minimization — the lowest dose at the lowest possible timeline. So always aim for stopping steroids as quickly as possible. And I think they put like about a six-month guideline there for us to stop steroids.
Obviously hydroxychloroquine is universal unless there's contraindications or allergy. I just had a patient who was put on hydroxychloroquine for lupus and she showed up in the office with a major, major allergic reaction — she had hives from head to toe. So in that particular case, I cannot use hydroxychloroquine on her. I do check G6PD on my African-American patients. So always a good thing to remember.
As I say, steroid sparing — less than 5 milligrams or zero if you can, which depending on the situation is sometimes hard to reach. I'm sorry. But it's not impossible, right? We have a lot of medications now in lupus. We have biologics. And one of the great things about the ACR guidelines is that they do early encourage the use of biologics right in moderate to severe disease. And I wish they were a little bit more specific on them, because you know once it is a moderate disease it has already progressed. I wish they had pushed for a little earlier, actually, in my honest opinion. But it's great that we actually have guidelines that say encourage use of biologics right off the bat.
Disease activity — the aim is remission or low disease activity. And as I said, it's organ specific, so we're going to go over a little bit of the organ-specific sections. It also addresses other things, right? Pregnancy and women's health — even menopause is there regarding hormone replacement therapy, which is important for a lot of us women.
It's a little light on lifestyle and comorbidity. Cardiovascular disease is mentioned, it's addressed, bone health is there, but there's a little more that we have to cover, right. And I said the limitations are very few — it's mostly, in my opinion, the vaccines and the monitoring. I think there was a lot more about monitoring that I wish was there. And I think that's where research is going to come in handy — predicting which patients are going to progress. That would be so awesome to have those things.
The strengths are most up-to-date, biologic forward, and steroid sparing. So it's a great, great guideline.
So here's my little — I love that it's colorful. And you can see that in the guidelines there are three different color setups: dark green for strong, light green for conditional, and pink for good practices or conditional recommendations. So there's not a lot in there.
In the very strong green, what do you got? You got the hydroxychloroquine, right, unless contraindicated, and the taper of prednisone — 6 months, ideally zero. That's a strong statement. I love that. So we can actually try as best as we can to get to that target.
And then it goes through mucocutaneous and gives you all the medications that you could possibly use for those patients. So again, mild mucocutaneous — you can use quinacrine. A couple of limitations on
quinacrine if you ever used it. Um it is compounded. It's not covered through insurance. Um it's a bit of a uh can tint the skin yellow. So it's not my favorite drug but it's there as a guidelines. I usually push more for the biologics. Um I had a patient once who was a pediatric patient um severe bullous lupus right off the bat and she was successfully treated with methotrexate in the beginning when she came to adult right she was about 18 and so family planning came into uh a discussion and even though her bullous lupus was very active I could not continue her methotrexate so in that case I completely switch her to the anti-CD20. Right? So you that shared decision making remember which is a core to our guidelines now let you have that conversation right even though it says quinacrine methotrexate and anifrolumab belimumab so at that point you know you have different ones that you can choose from but you cannot choose that by yourself you cannot choose that in the vacuum you have to go through the conversation with the patient what would be best for her uh lifestyle musculoskeletal. You have azathioprine, mycophenolate, methotrexate. I use a lot of methotrexate for arthritis. Do not use azathioprine or mycophenolate. But this is practice individual practice um you know differences. Um and I have a very low threshold to uh substitute for a biologic. So either belimumab and anifrolumab you know you can overlap with methotrexate until that drug becomes active.
Moving on to serositis. Um, so we have the colchicine, right? It's our standard. Uh, we use a lot. Haven't really used IVIG, but it's there. I currently have a patient who's having multiple flares of pericarditis. Um, but you know, she's on colchicine twice a day a little bit, but so I'm already putting her on biologic so we can transition her because it's not good to be on colchicine forever as well. So again, that early transition to biologic is spelled that out for you. All right. So, you have a weapon sometimes to fight with the insurance company, which is one of those uh blocks that we have uh when we're ordering medications um particular biologics or more expensive medications to our patients.
Hematology, it's interesting. They spell it out for you, right? Up to one. So, less than one, yes, treatment is recommended up to one. It's it's part of the disease. And if it's the only thing and I have a patient who is chronically leukopenic but she has no other manifestations so we just monitor we leave it alone it starts to drop that's the time that you start your biologic or start your immunosuppressive therapy and you engage the hematology as well right because certain decisions have to be made some are harder than others um IVIG anti-CD20 what would be best again that conversation between the team and the patient always looping the patient in every decision explaining to the patient everything that's going on and with hemolytic anemia you know anti-CD20 IVIG I'm having trouble ordering IVIG insurance is being a bit restrictive to it but I'm having an easier time uh sometimes ordering anti-CD20 and then if that fails you can move on to something else.
Neuropsychiatric lupus um you know I have quite a few patients who went through that unfortunately um and one of my um best cases was a patient I was actually on vacation and the husband called me and said that the patient kept telling him that she could talk to the dead and she was sending messages through for her family from the dead relative. So I immediately sent her to the ER. I knew what that was. That was neuropsychiatric lupus. Um definitely on the MRI you could see the changes but this was a patient who was very in charge of her own care and she absolutely refused to do three days of pulse. So again that is a conversation. So I took the time I spoke with the patient and say the pulse is invaluable at this particular point just to get you in a place where we can actually start long-term medications now and anti-CD20 and methotrexate and mycophenolate but she was always in charge so she kind of like tell me what dose she could tolerate. Okay so it's always that conversation is always explaining why you need to escalate therapy.
Um and and of note is important to know that there is mounting evidence that starting biologic early prevents organ uh disease right there's several uh studies but belimumab and anifrolumab that show that you can prevent organ um disease by almost 60% you can prevent uh disease from progressing in 60% of patients. So it's not something that we can ignore anymore. um this the age of biologics we fortunately have access in this country. So I highly recommend that you as the guideline says low threshold for moving on from one therapy to the biologic just to not only gain control of the disease but also to prevent further damage.
You also have guidelines for optic neuritis um cyclophosphamide mycophenolate and anti-CD20. I don't tend to use a lot of IV cyclophosphamide uh but it is there uh if it's a really
really severe case is there for you right with our population you always have a fear of infertility um problems down the line. So that's a conversation that you have to take with the patient and explain what the risks are particularly when you're using cyclophosphamide. So, it's important they always have that conversation um so the patient knows what's going on. It was a bit lacking on the cognitive dysfunction. We don't have a lot and this is one of the biggest problems we encounter with our lupus patients, right? It's the memory loss. Uh yeah, and they do recommend the cognitive therapy and but there's not a lot there in terms of medication unfortunately. But there is no treatment in immunosuppressing or biologic that we know so far can address that particular part of it.
Myelitis uh that's a that's is the only IV cyclophosphamide as you can see. Uh definitely it's you know it's there. It's just go for it. Um no questions about it. Myocarditis um again you have your choice. IV cyclophosphamide, mycophenolate, anti-CD20 or IVIG depending on the case. Um, use your guidelines between moderate to severe your prior experience. Always reach out to your senior physicians or your other attendings to know who had more experience treating myocarditis um to see and again involve the patient can say the shared decision making is super important right now for all of our patients.
Libman-Sacks if you ever seen one is the rarest of all my lupus patients. I have two patients with Libman-Sacks syndrome uh endocarditis sorry and um one does not have APS all right so she's only on aspirin so that's all the other one has positive labs for antiphospholipid syndrome and so she is on a stronger anticoagulant um so it it it all depends right it's case dependent so anticoagulation it's open to interpretation um but you and immunosuppressive therapy you know it's there too in case you think that will help my patient is also on immunosuppressive therapy and anticoagulation so both of them are something that you can definitely utilize um the risk for that um immune complex to let loose and cause clots is very high with these patients so particularly if there are antiphospholipid positive profile so again um if you don't have a lot of experience, you can definitely reach out. Um, this is not something you're going to pick up on exam. This is something that needs an echo. Uh, and that was what was happening with this patient. I tend to send all of my patients to the cardiologist. They all go to cardiology. Risk of cardiovascular disease is very high. And this was one of the points uh ACR made, but it was very briefly. So, I highly encourage everybody to send their lupus patients, even the RA patients. We know that cardiac disease is a big risk in our population. So cardiology for everybody, okay? And that's the only way you're going to know if that patient has Libman-Sacks. My patient was completely asymptomatic. They had no symptoms. They didn't even know it was there until they got the echo.
Moving on for the final vasculitis, right? And you have your choices there. Mild, severe, life-threatening. So it all depends, right? So as a print is there depending it's mild. I have a new patient that just came in um and her first thing was just the vasculitic rash over the legs. So we quickly started obviously on hydroxychloroquine and we put her on actually uh azathioprine and right now she's doing great right um severe IV cyclophosphamide and anti-CD20 so it again all depends and you know that lupus never presents with one thing right uh it's not just musculoskeletal it's not just vasculitis it's not just leukopenia it's really a gamut of different presentations. So in this particular case, you have to pick whatever is the the most concerning at this point, right? Uh severe vasculitis, IV cyclophosphamide, anti-CD20. Again, remember to have the reproductive talk with your patients. Life-threatening, you have to add the plasmapheresis or IVIG, right?
But overall, these are great guidelines. We finally need it. Uh a more complete and more com like I wouldn't call complex but really like detailing by each presentation can't stress enough that you have to talk to your patients about every single medications why you putting them on prednisone and then monitor for that complication for prednisone right diabetes hypertension we cause a lot of our own comorbidities so we have to be responsible for it um it's always good to partner with your primary care in in case you know somebody needs to manage that diabetes. Um overall um follow the guidelines. If you don't know if you never had an experience with a patient with lupus vasculitis with musculoskeletal and serositis go for your senior physician or your senior attending um always good to create a discussion right we all learn from each other. And I think with that I'm going to end here. So, thank you for listening to me today. Um, thank this is part of RheumNow month for a which is a great uh initiative. Uh, if you need to learn more, you can
always go to the RheumNow website. There's a ton of podcasts and a ton of other information there. They're very valuable to us in rheumatology. Thank you.
Today we're going to be talking about the 2025 ACR guidelines. Look, I printed it out and I even made notes on it, because it was about time, right? We haven't really had an ACR guideline for a long time. We have different guidelines. We had the EULAR, we also have Chinese guidelines and PANLAR. But for us here in the United States, it's been a while since we had specific guidelines. And the great thing about the ACR guidelines is it almost reminds me of the GRAPPA guidelines because it actually goes by body system, right? So each one has its own guidelines.
There are a couple of limitations in the guidelines. Obviously lupus being a complex disease, it's not possible to cover everything. But whatever is not covered in the lupus guidelines you can find in the other guidelines. So I highly recommend you actually Google — the Chinese guideline, for example, has a lot on vaccines.
So let's start a little bit about the ACR guidelines. The core philosophy of the ACR guidelines is treat-to-target, right? We talk about treat-to-target in other diseases, but now we're talking about treat-to-target in lupus, which is very exciting. Shared decision making — because if you make that decision alone, most likely your patient is not going to take that medication, so you have to take it into consideration. And also it's a great push for steroid minimization — the lowest dose at the lowest possible timeline. So always aim for stopping steroids as quickly as possible. And I think they put like about a six-month guideline there for us to stop steroids.
Obviously hydroxychloroquine is universal unless there's contraindications or allergy. I just had a patient who was put on hydroxychloroquine for lupus and she showed up in the office with a major, major allergic reaction — she had hives from head to toe. So in that particular case, I cannot use hydroxychloroquine on her. I do check G6PD on my African-American patients. So always a good thing to remember.
As I say, steroid sparing — less than 5 milligrams or zero if you can, which depending on the situation is sometimes hard to reach. I'm sorry. But it's not impossible, right? We have a lot of medications now in lupus. We have biologics. And one of the great things about the ACR guidelines is that they do early encourage the use of biologics right in moderate to severe disease. And I wish they were a little bit more specific on them, because you know once it is a moderate disease it has already progressed. I wish they had pushed for a little earlier, actually, in my honest opinion. But it's great that we actually have guidelines that say encourage use of biologics right off the bat.
Disease activity — the aim is remission or low disease activity. And as I said, it's organ specific, so we're going to go over a little bit of the organ-specific sections. It also addresses other things, right? Pregnancy and women's health — even menopause is there regarding hormone replacement therapy, which is important for a lot of us women.
It's a little light on lifestyle and comorbidity. Cardiovascular disease is mentioned, it's addressed, bone health is there, but there's a little more that we have to cover, right. And I said the limitations are very few — it's mostly, in my opinion, the vaccines and the monitoring. I think there was a lot more about monitoring that I wish was there. And I think that's where research is going to come in handy — predicting which patients are going to progress. That would be so awesome to have those things.
The strengths are most up-to-date, biologic forward, and steroid sparing. So it's a great, great guideline.
So here's my little — I love that it's colorful. And you can see that in the guidelines there are three different color setups: dark green for strong, light green for conditional, and pink for good practices or conditional recommendations. So there's not a lot in there.
In the very strong green, what do you got? You got the hydroxychloroquine, right, unless contraindicated, and the taper of prednisone — 6 months, ideally zero. That's a strong statement. I love that. So we can actually try as best as we can to get to that target.
And then it goes through mucocutaneous and gives you all the medications that you could possibly use for those patients. So again, mild mucocutaneous — you can use quinacrine. A couple of limitations on
quinacrine if you ever used it. Um it is compounded. It's not covered through insurance. Um it's a bit of a uh can tint the skin yellow. So it's not my favorite drug but it's there as a guidelines. I usually push more for the biologics. Um I had a patient once who was a pediatric patient um severe bullous lupus right off the bat and she was successfully treated with methotrexate in the beginning when she came to adult right she was about 18 and so family planning came into uh a discussion and even though her bullous lupus was very active I could not continue her methotrexate so in that case I completely switch her to the anti-CD20. Right? So you that shared decision making remember which is a core to our guidelines now let you have that conversation right even though it says quinacrine methotrexate and anifrolumab belimumab so at that point you know you have different ones that you can choose from but you cannot choose that by yourself you cannot choose that in the vacuum you have to go through the conversation with the patient what would be best for her uh lifestyle musculoskeletal. You have azathioprine, mycophenolate, methotrexate. I use a lot of methotrexate for arthritis. Do not use azathioprine or mycophenolate. But this is practice individual practice um you know differences. Um and I have a very low threshold to uh substitute for a biologic. So either belimumab and anifrolumab you know you can overlap with methotrexate until that drug becomes active.
Moving on to serositis. Um, so we have the colchicine, right? It's our standard. Uh, we use a lot. Haven't really used IVIG, but it's there. I currently have a patient who's having multiple flares of pericarditis. Um, but you know, she's on colchicine twice a day a little bit, but so I'm already putting her on biologic so we can transition her because it's not good to be on colchicine forever as well. So again, that early transition to biologic is spelled that out for you. All right. So, you have a weapon sometimes to fight with the insurance company, which is one of those uh blocks that we have uh when we're ordering medications um particular biologics or more expensive medications to our patients.
Hematology, it's interesting. They spell it out for you, right? Up to one. So, less than one, yes, treatment is recommended up to one. It's it's part of the disease. And if it's the only thing and I have a patient who is chronically leukopenic but she has no other manifestations so we just monitor we leave it alone it starts to drop that's the time that you start your biologic or start your immunosuppressive therapy and you engage the hematology as well right because certain decisions have to be made some are harder than others um IVIG anti-CD20 what would be best again that conversation between the team and the patient always looping the patient in every decision explaining to the patient everything that's going on and with hemolytic anemia you know anti-CD20 IVIG I'm having trouble ordering IVIG insurance is being a bit restrictive to it but I'm having an easier time uh sometimes ordering anti-CD20 and then if that fails you can move on to something else.
Neuropsychiatric lupus um you know I have quite a few patients who went through that unfortunately um and one of my um best cases was a patient I was actually on vacation and the husband called me and said that the patient kept telling him that she could talk to the dead and she was sending messages through for her family from the dead relative. So I immediately sent her to the ER. I knew what that was. That was neuropsychiatric lupus. Um definitely on the MRI you could see the changes but this was a patient who was very in charge of her own care and she absolutely refused to do three days of pulse. So again that is a conversation. So I took the time I spoke with the patient and say the pulse is invaluable at this particular point just to get you in a place where we can actually start long-term medications now and anti-CD20 and methotrexate and mycophenolate but she was always in charge so she kind of like tell me what dose she could tolerate. Okay so it's always that conversation is always explaining why you need to escalate therapy.
Um and and of note is important to know that there is mounting evidence that starting biologic early prevents organ uh disease right there's several uh studies but belimumab and anifrolumab that show that you can prevent organ um disease by almost 60% you can prevent uh disease from progressing in 60% of patients. So it's not something that we can ignore anymore. um this the age of biologics we fortunately have access in this country. So I highly recommend that you as the guideline says low threshold for moving on from one therapy to the biologic just to not only gain control of the disease but also to prevent further damage.
You also have guidelines for optic neuritis um cyclophosphamide mycophenolate and anti-CD20. I don't tend to use a lot of IV cyclophosphamide uh but it is there uh if it's a really
really severe case is there for you right with our population you always have a fear of infertility um problems down the line. So that's a conversation that you have to take with the patient and explain what the risks are particularly when you're using cyclophosphamide. So, it's important they always have that conversation um so the patient knows what's going on. It was a bit lacking on the cognitive dysfunction. We don't have a lot and this is one of the biggest problems we encounter with our lupus patients, right? It's the memory loss. Uh yeah, and they do recommend the cognitive therapy and but there's not a lot there in terms of medication unfortunately. But there is no treatment in immunosuppressing or biologic that we know so far can address that particular part of it.
Myelitis uh that's a that's is the only IV cyclophosphamide as you can see. Uh definitely it's you know it's there. It's just go for it. Um no questions about it. Myocarditis um again you have your choice. IV cyclophosphamide, mycophenolate, anti-CD20 or IVIG depending on the case. Um, use your guidelines between moderate to severe your prior experience. Always reach out to your senior physicians or your other attendings to know who had more experience treating myocarditis um to see and again involve the patient can say the shared decision making is super important right now for all of our patients.
Libman-Sacks if you ever seen one is the rarest of all my lupus patients. I have two patients with Libman-Sacks syndrome uh endocarditis sorry and um one does not have APS all right so she's only on aspirin so that's all the other one has positive labs for antiphospholipid syndrome and so she is on a stronger anticoagulant um so it it it all depends right it's case dependent so anticoagulation it's open to interpretation um but you and immunosuppressive therapy you know it's there too in case you think that will help my patient is also on immunosuppressive therapy and anticoagulation so both of them are something that you can definitely utilize um the risk for that um immune complex to let loose and cause clots is very high with these patients so particularly if there are antiphospholipid positive profile so again um if you don't have a lot of experience, you can definitely reach out. Um, this is not something you're going to pick up on exam. This is something that needs an echo. Uh, and that was what was happening with this patient. I tend to send all of my patients to the cardiologist. They all go to cardiology. Risk of cardiovascular disease is very high. And this was one of the points uh ACR made, but it was very briefly. So, I highly encourage everybody to send their lupus patients, even the RA patients. We know that cardiac disease is a big risk in our population. So cardiology for everybody, okay? And that's the only way you're going to know if that patient has Libman-Sacks. My patient was completely asymptomatic. They had no symptoms. They didn't even know it was there until they got the echo.
Moving on for the final vasculitis, right? And you have your choices there. Mild, severe, life-threatening. So it all depends, right? So as a print is there depending it's mild. I have a new patient that just came in um and her first thing was just the vasculitic rash over the legs. So we quickly started obviously on hydroxychloroquine and we put her on actually uh azathioprine and right now she's doing great right um severe IV cyclophosphamide and anti-CD20 so it again all depends and you know that lupus never presents with one thing right uh it's not just musculoskeletal it's not just vasculitis it's not just leukopenia it's really a gamut of different presentations. So in this particular case, you have to pick whatever is the the most concerning at this point, right? Uh severe vasculitis, IV cyclophosphamide, anti-CD20. Again, remember to have the reproductive talk with your patients. Life-threatening, you have to add the plasmapheresis or IVIG, right?
But overall, these are great guidelines. We finally need it. Uh a more complete and more com like I wouldn't call complex but really like detailing by each presentation can't stress enough that you have to talk to your patients about every single medications why you putting them on prednisone and then monitor for that complication for prednisone right diabetes hypertension we cause a lot of our own comorbidities so we have to be responsible for it um it's always good to partner with your primary care in in case you know somebody needs to manage that diabetes. Um overall um follow the guidelines. If you don't know if you never had an experience with a patient with lupus vasculitis with musculoskeletal and serositis go for your senior physician or your senior attending um always good to create a discussion right we all learn from each other. And I think with that I'm going to end here. So, thank you for listening to me today. Um, thank this is part of RheumNow month for a which is a great uh initiative. Uh, if you need to learn more, you can
always go to the RheumNow website. There's a ton of podcasts and a ton of other information there. They're very valuable to us in rheumatology. Thank you.
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