Living with Lupus

Lupus Type 1 and Type 2: Symptoms and Treatment Distinctions

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When considering treatment options for Lupus Warriors, clinicians should focus on key symptoms. These symptom groups, coined Type 1 and Type 2, manifest from different biological activity.

Systemic lupus erythematosus, or SLE, is the most common type of lupus. SLE is usually what people mean when they just say “lupus”. It is an autoimmune disease that has a broad spectrum of intensity, ranging from mild symptoms, to serious organ issues. SLE has acute (short-term and intense) and chronic (long term and constant) symptoms.

Chances are, if you have SLE, you experience a variety of symptoms that fall under both categories. You can read more about SLE and its symptoms here.


A Strategic Approach to Lupus Management

The goal of clinical care is to identify the most appropriate treatment for a given patient. Researchers have developed a model which “posits that manifestations of SLE can be divided into 2 broad categories,” termed Type 1 and Type 2.

Lupus Type 1 SLE and lupus Type 2 are different subsets – types – of SLE  symptoms. It is possible for a person to experience both types. They are classified according to their symptom profiles, but also have biological differences. Your clinician can refine their treatment approach as particular medications lead to better results depending on type.

Type 1 causes the most tissue damage. It involves more immune system activity that actively attacks the internal organs. While Type 1 can quiet down and resemble remission, it can also flare up into painful, debilitating events.

Type 2 presents with less immune system activity and less organ damage. However, people with Type 2 SLE experience high levels of pain, fatigue, and more constant symptoms. Type 2 can come and go, and also have flares, but it usually ‘simmers’ at a lower intensity, but more constant state. These Type 2 concerns should be prioritized and treated by clinicians. Though, studies have shown that managing organ damage is often a rheumatologist’s primary concern.


Type 1 Lupus and Lupus Nephritis

Type 1 SLE is heavily associated with organ damage, and that includes the kidneys. The inflammation happens in the nephrons, the part of the kidney that is in contact with the bloodstream. The kidneys filter out waste products and keeping a good balance of salts and water in the blood. In SLE and lupus nephritis, the immune system misidentifies and attacks healthy tissues of the kidneys.

Lupus nephritis is distinct from SLE. However, the inflammation and subsequent organ damage caused by SLE leads to lupus nephritis. Although Type 2 SLE can lead to a lot of generalized inflammation in the body that could trigger lupus nephritis, this direct damage to the kidneys by Type 1 SLE appears to be a more frequent trigger.


Different Antibodies, Different Symptoms

One of the primary differences between the two types of lupus is the presence of a specific type of antinuclear antibody. Antinuclear antibodies (“ANA”)mark proteins found inside a cell’s nucleus (the “control center” of the cell). This sends the immune system to attack otherwise healthy cells. Normally, antibodies tag harmful pathogens, such as bacteria and viruses. But in autoimmune conditions such as lupus, ANAs set the body against itself. These types of antibodies are detected by a series of tests called ANA tests, which you can read more about here.

The special ANA that differentiates Type 1 and Type 2 lupus is Anti-dsDNA. Anti-dsDNA tags and attacks DNA strands. It is found in about 30% of people with SLE.

When it attaches to DNA, it may begin or contribute to chronic inflammation, and increased levels of anti-dsDNA may herald a return of disease. Several tests, including the enzyme-linked immunosorbent assay (ELISA), the Crithidia luciliae immunofluorescence test, and radioimmunoassay tests, can detect it.


Anti-dsDNA Antibodies

These anti-dsDNA antibodies are a major factor in organ damage (particularly of the kidneys) and  serositis. Researchers often find them in structures associated with (and inside) the kidney. This makes it very likely that they are the antibodies responsible for causing the damage. Add this to the fact that 2-30% of patients with SLE test negative for these antibodies, and there is a very compelling case for anti-dsDNA antibodies being involved in Type 1 SLE, but not necessarily Type 2.


Anti-RNP Antibodies

In comparison, anti-RNP antibodies are ANAs that react to RNA. RNA acts as a messenger, carrying the instructions for protein synthesis. Anti-RNP antibodies are generally associated with skin manifestations, as in cutaneous lupus, though whether they are associated with chronic disease is less known. However, the fact that there appear to be two different antibody profiles – the antibodies that are in play in each case – make it very likely that anti-RNPs may be a part of Type 2 SLE.

However, Anti-dsDNA antibodies frequently respond to immunosuppressant drugs, which shut down the immune system to prevent severe symptoms.


Strategically Treating Symptoms

Lupus Type 1

The etiology of lupus Type 1 is autoimmunity (inflammations-based which can lead to organ damage). Immunosuppressants and corticosteroids treat the biological factors related to Type 1.

These biological factors result in symptoms like:


Lupus Type 2

The etiology for Type 2 is noninflammatory. As such, these symptoms will not respond to standard immunosuppression.

Type 2 lupus patients are more likely to be prescribed analgesics (for pain), antidepressants, and lifestyle strategies (including sleep hygiene and exercise) to battle symptoms.

 Common Type 2 symptoms include:


A Lupus Warrior’s Takeaway

Aside from differences in treatment options, what does it matter what type you have? Understanding the type of SLE you have can help predict what issues you are more likely to face in the future:

  • People with Type 1 SLE will have to be on the lookout for signs of organ failure. Proactive monitoring helps protect the kidneys. Catching organ damage early is essential for limiting overall damage. It also underscores the importance of certain medication options.
  • People with Type 2 SLE benefit from knowing that the symptoms are going to be more continuous. These symptoms, especially fatigue and pain, are both difficult to explain and severely impact day-to-day life. Many people write these symptoms off or try to “power through”. But, a lupus diagnosis can be a helpful step towards active strategies to reduce symptoms and chronic inflammation. You will also be more aware of new symptoms manifesting for different periods of time. And, will be better able to track them, figure out flare triggers, and report them to your lupus treatment team.
Comments (58)

58 thoughts on “Lupus Type 1 and Type 2: Symptoms and Treatment Distinctions

  1. I have type 2, and sometimes I feel so lazy and useless. Summer in Texas is horrible for me. I haven’t ridden my horses in months. When my lupus flares badly my migraines are worse too.
    It is very hard for my grandkids to understand that I cannot be outside with them in the heat and sun.

    1. Nobody understands the pain and fatigue we go through every day, especially our wonderful grandchildren. Very few good days but if i do too much then i am in bed for a week. I also live in Texas and this heat makes me feel like i am going to die. The migraines are really bad too. I wish there was something that would help them, i have tried everything. Where in Texas do you live? I live north of Houston. {{Gentle Hugs}} I hope you have some good days coming up.

      1. I am sorry to just now get back to you. I live in Upshur county ne tx. My brother calls it west Louisiana. Finally feeling better with the cooler weather. Actually did some work in the yard and rode one of the horses. Of course since I was up early yesterday, I slept late today. Tomorrow I must get on my fat mare again. Lupus affects more than just myself on the farm. Everything suffers because of it.

        1. I have lupus 30 years I’m 55 know I really want a facelift. Do you think it’s safe for someone with lupus?

        2. I have lupus 30 years I’m 55 know I really want a facelift. Do you think it’s safe for someone with lupus?

          1. I was diagnosed with SLE Lupus in my early 30’s. I had a mini face lift when I turned 50 and I did fine. I am now 68 and ready for a refresh but, I am a lot more concerned about how I would do now even though I probably felt worse at the time I had the last one. As with everything, you should ask your Rheumatologist as well as, make the Plastic Surgeon aware of your a lupus and take their advice. Best of Luck

        1. Me too! Topomax is a god send. There are some strange side effects at first such as tingling of the face but really stuff we can live with. They will go away. I went from debilitating migraines to now maybe here and there a headache. Hope you feel better soon

  2. Had reaction to medication, dealing with pain, fatigue, restlessness now acquired acute hives. Alot of mood swings HELP

    1. I also experience hives. I itch constantly. I wear my inside the house clothes inside out as it seems to not be so itch inducing!

  3. I’m tired and have ever changing pain daily. I have occasional pain free periods during some days. I’m tired of feeling lazy and pained which leads to my depression. I’m 70 years old and have been diagnosed for 5 years. I have a job but because of my lupus and with Covid I haven’t worked since March. Dont know if I will again.

    1. I am rhe same age as you,and not working either, stomach isues are my problem and this past year yeast infections are reaccuring,many many years have not had a yeast problem.

        1. I have both Lupus 2 and Fibromyalgia. Many days it is hard to discern which one my pain and flare come from. But I have not had a pain free day in 40 years. Discouraging sometimes.

  4. My husband doesn’t understand I can’t tolerate heat and humidity. He thinks I’m just weak and just don’t want to work outside. I literally get sick to my stomach and find myself looking for somewhere to get out of the heat. Please tell me this is normal for this condition…….
    My doctor “thinks” I have Lupus. Everything I feel and I have read point to it.

    1. I hear you! The heat is a killer, whether it is direct sunlight or heat from a heater ot fireplace. It leaves me with constant headaches and muscle weakness. I live in South Africa and am always weary of the end of our short winters as it means the blazing dry heat is on its way. Lupus is insidious and there is no direct Lupus medication. Plasmoquine made my eyesight worse and I had to stop taking it. Prednisone is helpful but I hate the moon face effect. Summer also means the information becomes intense and takes longer to subside. I am yet to figure out what I can take to minimise the memory loss and brain fog. Few people understand that we do not make up these symptoms nor wish for them. Lupus changes your life. I have found that keeping your mind strong , perseverance and determination are the only things that allow me to force myself to wake each morning. Stay strong fellow warriors

      1. I moved to Florida. I love the heat, but I have to keep hydrated. It has been very cool the last couple of weeks and I have more pain than usual. Could the cold be causing my pain to worsen? I’m to the point where I can’t handle it and I’m on pain mgmnt. Help

        1. When I get cold, I literally shut down and feel physically ill. I can’t tolerate the heat either, I feel weak and wimpy. My quality of life is minimal.

    1. The tip of my tongue feels sore quite often but my dentist can’t see anything wrong with it. Maybe it’s the lupus, I don’t know.

      1. Donna, my dentist has diagnosed me with an autoimmune problem called geographical tongue. My mouth is in pain all of the time ! I have to avoid acidic foods, spicy foods and sugar.

        1. Omg 😳 I also have this along with my lupus, fibromyalgia, lupus arthritis
          Chilblains lupus ( sores on toes and fingers tips ) Reynauds and PR3’s came back high/pos for inflammation in the small blood vessel within my entire body. The geographical tongue is absolutely horrible 24/7. The daily pain, in my joints my muscles the intensity of pain, aches and throbbing simply makes daily life hard. The headaches, the sensation that I have now where it’s painful to simply be touched or the unusual pain to things that shouldn’t cause pain like water skin contact, skin to touch contact. The intolerance to heat/sun cold/air, the increasing symptoms in weather changes or around that time of the month, sensitive to light and sun. I mean the list could go on and on. No one seems to fully understand not even the team of specialists that treat you. That look at paper and numbers not individual patients patterns and symptoms. Being in the medical field I’m very aware that bloodwork came actually take time to catch up and show what needs to be seen in their eyes to deem you as ( this is actually happening to this patient) got to the point that I take pictures of everything as proof to validate what I tell them being that you’re only seen every 6/8 weeks for check up / labs. I’m one of the patients that’s constantly on.. it’s never ending maybe a good day here and there but fir the most parts it’s bad. 5 years of this and “ it gets better “ phrases that they tell you hasn’t seem to be accurate in my situation, I’ve yet to seen those days. At 39 I had to file for disability and 40 that’s my life…. 💜 thank God for God and my amazing family. God is my rock my foundation my family is what keeps me keeping on when there are days you ask yourself “ how can I go one more day like this “ my LW 💜🦋 stay strong we are in this together if no one understands us, we do! Blessing and favor to all!

          1. Have you had your vitamin D checked and optimised to high normal range? This has been a game changer for me. Also I followed a FODMAP diet plan and eliminated all highly fermentable foods many of which I had already found triggered reflux and IBS acute painful cramping episodes. Elimination of triggers has also been very good at settling related inflammatory issues. I have a number of autoimmune disorders and only just clicked it’s probably Lupus. Yet to get diagnoses. Reflux and IBS resolved.

      2. Do you have any other symptoms in your mouth? I have Sjögrens as well. I get blisters inside of my mouth, I know not pretty to talk about. Might be something to read up on. So sorry you are hurting. All the best

        1. Have you eliminated garlic from your diet? I have found I get blistering rash on top palate in mouth after eating garlic. Have read that garlic may be a trigger for mouth sores in Lupus.

  5. I am 39 years old and have been a nurse for 16 years. I’ve had joint pain, swelling, disgusting fatigue, and general laziness for the last year and have recently been seen by a rheumatologist. I can not go to work when it’s hot, my legs are horrifically painful from the hips to my ankles. I can’t sit for a long time, nt sand for a long time, I can’t hike anymore and even struggle to walk my dogs. I finally live on the Weat Coast where it’s beautiful and I can barely enjoy the beach unless it’s a cloudy day. Please tell me that it can get better!!! I haven’t started medication yet, we are awaiting lab results. I have taken Gabapentin twice a day for 5 years and Cymbalta (it helps for a few hours). I just want to enjoy my life and my career.

    1. I too am on the west cost and all I can say is Benlysta all the way. I do not think I could have continued on with out this remarkable infusion.

  6. Migraines run alongside aching legs and fatigue for me too. But I gotta say, it’s better here on the west coast than it was in the humid heat of the Texas summer. Quinacrine helped me years ago, though it turned me orange as a pumpkin. Now I’m taking Plaquenil with less success but less coloring too.

  7. Can I apply for disability with Lupus. I’m having a hard time walking and standing. If I sit too long my ankles start to swell. I’m working and this year my lupus is worse. I use a shower chair for showering. I’m having trouble walking up the steps.

    1. For sure. Migraine and lupus led me to apply for and receive RSDI and retirement disability from the state of Texas because I worked for Texas. I was denied the first time, but approved on appeal.

    2. Yes ma’am you can and you can get full benefits for it. I did within 7 months of filing. Please have a disability lawyer apply for you and do the work and get paid afterwards. I understand the struggle don’t give up

  8. I am 70 and have had SLE Lupus for 20 years never heard of 1 and 2 but believe I have both. Didn’t suffer too bad for the first few years but then it hit. Ulcers on my ankle area landed in the hospital for 11 days with IV antibiotics and wound care. It has been horrible hair loss, hearing loss, chest pains, digestive problems, some rare things with Lupus. Memory loss at times. Pineculitous (sp)it causes knots under the skin it’s an accumulation of fat cells. They say they start from the top of your body but mine started at my ankles and working up. Dr says it’d rare in Lupus. Fatigue is terrible now my balance is bad and they say it’s from circulation. I have weight loss from the digestive problems. Had a full knee replacement and need a hip but I stay so weak I don’t know if I could handle. Dr says it’s so worse because I was diagnosed at 50 which is a late age. Also saw Dr and diagnosed 2 days later. Rheumatologist has me on Cell Cept something new we are trying 2 times a day plus Plaquenil and IV. Was on prednisone 18 years but off now. Trying anything but still suffering so bad. Been on pain med for 13 years but not getting much results out of it after this long. I feel for anyone with this. We can’t plan a trip and sometimes going to the grocery store puts me down the next day.

    1. I’m 60 and just finally getting diagnosed! Thanks to the C-19 virus I had last March that set everything off in my body. But I finally got health insurance and a doctor to listen to me that ordered tests. She sent me to a Rheumatologist that ordered more tests. The exhaustion is back but the pain is worse than it has ever been. I’m hoping for more answers when I go back to the Dr on Tues.

  9. I am rhe same age as you,and not working either, stomach isues are my problem and this past year yeast infections are reaccuring,many many years have not had a yeast problem.

  10. I got Lupus when I was 25, working for a few months in a very stressful environment. I’ve been living with mild lupus for three years. It flares up whenever I got anxious. Finger pains, anxiety, moody, and gastritis are the normal ones. Now I started getting lowback pain and sometimes neck pain. What is very disturbing for my daily life is the low mood. I feels really tired just going around the neighborhood.

  11. Sun breaks me out sometimes. But the heat I LOVE!!! I feel best when warm and in warm weather without humidity cause that not good either. But COLD weather like 40 degrees and colder …screws me really bad with muscle tightness especially in my chest on left side all around heart and into shoulder blades

  12. Doctors are running tests on me. I tested positive for ANA. Mine started with plaque psoriasis, from my ankles all the way to my neck. Looked like I had ring worm. I think I’m at the early stages. Took Hydroxychloquine for 8 months. Now I am on Methotreate, folic acid and prednisone. Been on these for 3 months . I would say I think I am in my early stages. I’m tired, sleep alot, my hearing has gotten bad. Seeing every kind of Dr. You can imagine. In the last 2 years I’ve gone from only my physicals, to seeing all different kinds of Drs. I could go on and on.

    1. Don’t fret the Methotrexate, I’ve been on it for at least 15 years. I went from pills to I now give myself a shot once a week. Keep in mind you don’t want to be a lifer on Prednisone, it’s a life saver but wreaks havoc at the same time. I’ve had Lupus for 30 years and I’ve been on steroids for 25 of them(I’m finally down to 10mg a day). They are necessary in many cases unfortunately.

  13. I’m 72, first diagnosed with undifferentiated connective tissue in 1991,:plaquenil with prednisone. In 2012;my eye exam (with new super machines) detected problem with macula in left eye so stopped plaquenil. I was able to get by until 2019, I started on minocycline, but slipped on dog slobber (barefoot in the kitchen, wood floor) and had a very hard fall on my bum! From that point on things have been very confusing. My tests were good so stopped minocycline, but the back from the fall continued to hurt, and Covid had descended. Took months to finally get into brain and spine people. Finally began injections in the back (don’t try without a couple of Valium), and the injections set my autoimmune up again. This time they included the double stranded DNA ANA test which was positive. While my diagnosis is not lupus (no rash or organ involvement) only people with lupus test positive to the test. This made me research lupus for the first time in years and I suppose the biggest surprise I got was the headaches! 72% of people with lupus have headaches and migraines. I’ve had migraines since I was 8 or 9 and have woken with a headache every morning since sometime in high school. I was downing 8-10 Excedrin a day, until my stomach doc said No More Excedrin. Went to a neurologist and she gave me butalbital (generic Fioricet), heaven sent. A couple of times doctors have expressed concern, I take sometimes one, or two a day – extreme times a third one. I’ve told them one of these a day versus 8-10 Excedrin, are you serious? I’ve tried Botox shots (that caused headaches), while getting injections for my back we injected back of my head, didn’t help. Now that I see it’s part of lupus I’ve stopped trying the needle route. My monthly “ration” I’ve maintained and doctors are no longer harassing me about it. I’ve been off prednisone for over a year. But now my lower back pain, is it from the fall over a year ago, or autoimmune? These occasional weird electric-like pains that come from my lower back and shoot down my legs and are debilitating for several minutes. What is that? From the fall, or autoimmune? That usually happens when I get up to go to the bathroom in the middle of the night, but this past Sunday it happened in the pasture while I was feeding my beloved horse and donkey, so I found myself clinging to a fence post. It washes me out of energy. I live in Texas like several of you but I learned many years ago to do things outside after 6:30 in the evening, later in the summer, and to really enjoy those Texas mornings really early. So now I’m flummoxed with the apparent nerve pain and other weird stuff and the fatigue that waxes and wanes throughout the day. I did not expect this at 72! Fortunately family is nearby, very helpful during the big freeze a few months back. And now there’s Lupus 1 and 2. The more they learn, the less they know.

    1. Have you checked you have a good level of vitamin D. This vitamin is not available from food in sufficient amounts. In lupus uv can trigger symptoms so with sun Screen and sun avoidance strategies many have very low vitamin D. This can result in bone, muscle and joint pain. With loss of calcium from bones also can lead to osteoporosis. Vitamin D. Has really been a game changer for me. I was hardly able to walk, couldn’t do stairs without a rail. Since optimising the level of vitamin D. I am riding a bike more than 40 miles. Can walk and do stairs easily. I still have problems. Like hypothyroidism. Alopecia universalis and cramp and muscle pain have recently flared up but think this is because I haven’t been sun avoiding or using enough sun cream, and exercising to excess. Pacing of activities is so Importent in managing this condition. I am 66.

  14. I am a physician with a 35 year history of lupus, and have a few recommendations for everyone. PROTECT YOURSELF ALWAYS FROM SUNLIGHT/UV LIGHT!!! Even on a cloudy day, you still get UV exposure unless it’s dark outside. AAlways use a hat and sunscreen of at least 35 SPF, an SPF umbrella, clothing, etc. UV is a HUGE trigger, even if you don’t get rashes. Also, LISTEN TO YOUR BODY and get all the rest you need. Balance it with at least a 30 minute walk daily, and be as active as possible to maintain your health long-term and combat fatigue. DO NOT PUSH YOURSELF BEYOND WHAT YOUR BODY TELLS YOU YOU CAN HANDLE, AS THIS WILL CAUSE FLARES!!! EATING A VEGAN DIET MAY HELP YOU, AS IT’S THE MOST ANTI-INFLAMMATORY DIET. Avoid junk foods, processed foods, and try daily kale smoothies, which may help combat fatigue too.
    Try not to get discouraged. If you take very good care of yourself, you can have a decent quality of life!!!

  15. I have mild-moderate type 1 and severe type 2 and I am so glad that the distinction between the two has finally been made clear. I have inflammatory issues: serositis, inflammatory arthritis and skin symptoms and vasculitis. I have almost no end organ damage except very mild kidney damage-CKD 2.
    I also have all of the type 2 symptoms and I am affected by daily indolent symptoms.

  16. I have the ds- anti dna antibodies, sjogrens anti- Ro, and Raynauds as well as fibromyalgia. It all started about 30 years ago with sun induced rashes. A few years later it went crazy and I spent 8 years on prednisone, Plaquenil and methotrexate to get a hold of it. I did experience some mild kidney issues that were terribly uncomfortable. I always felt I had to go to the restroom, barely anything but was swelling a lot. Finally after too many years I was able to
    ween down to just Plaquenil. After 17 years on Plaquenil, it showed eye damage occurring
    from Plaquenil. Had to stop. 2 months later I was in a full blown flare again and heading
    toward more kidney issues. The doctors put me on Imuran but my liver almost failed from that. That was around the time that Benlysta was available in my area here in the south. I have been on Benlysta ever since and it has held me right at the low simmer point. Now my rheumatologist has retired and come to find out my prescription refills have run out! Thankfully I have an appointment scheduled in three weeks with a new rheumatologist and hopefully he will continue this protocol. The double stranded DNA antibodies have never totally disappeared but they have definitely gone down a lot. Just praying all goes well in the next few weeks!

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