How Severe is Your Lupus? Use a Lupus Severity Index

Read on: learn how you to figure out your lupus disease activity
And why it is important

Why measuring lupus disease activity is so important

Our goal in treating systemic lupus erythematosus (SLE) is to get it into remission and on no, or very little, steroids (such as prednisone). This means getting rid of all inflammation using medications as well as ultraviolet light protection, vitamin D, and the other measures as discussed in my “Lupus Secrets.”

It is a good idea to get a sense of how severe your SLE is. Some patients resist additional treatment when we recommend it. They think that their lupus is not bad enough to warrant additional drugs or higher doses of the medicines they are taking.

On the other hand, you may feel that  your lupus is more active than your rheumatologist thinks. Some rheumatologists may underestimate the severity of someone’s lupus. You could help your rheumatologist by calculating the severity yourself, present the results to him or her to see what they think about therapy.

So, how can you measure how active your lupus disease activity is? … EASY!

Introducing: The SLEDAI

The Systemic Lupus Erythematosus Disease Activity Index (SLEDAI for short) is a research tool that is used to measure lupus disease activity in research. Yet, it is also helpful for doctors to understand how active someone’s SLE is. This information can help make better decisions regarding treatment.

Here is an online calculator that makes it incredibly easy to calculate your score:

https://qxmd.com/calculate/calculator_335/sledai-2k

To use the SLEDAI (table 29.1), get a copy of the last note, and lab results from your rheumatologist.

Go to the online calculator and click “yes” or “no” for each question. It is essential to make sure that you completely fulfill the definition. For example, you may have severe arthritis from lupus in 2 joints. That does not count. You need 3 joints to be affected. You must click an answer for all 24 possibilities, then click on “Go to results” to see your final score.

IMPORTANT CAUTIONS WHEN DOING YOUR SLEDAI:

– Many to most patients will over score themselves. Please pay attention to these important recommendations. The SLEDAI is only for lupus inflammatory symptoms and NOT for type 2 symptoms (diffuse pain, fatigue, lupus fog, etc.)
– Only include those items active in the past 10 days
– Do NOT click yes for headaches. True lupus disease headaches are so rare, I’ve only seen 2 in my career. Lupus experts are recommending it even be removed from the SLEDAI
– Do NOT count visual disturbance. 99% of visual disturbances are not due to lupus inflammation. Only your ophthalmologist would know. You’d have to have had seen your eye doc in the past 10 days and they would have had to tell you that you have active inflammatory lupus retinopathy, maculopathy, or active optic neuritis (optic nerve damage, retina damage do not count)
– Do NOT mark CVA unless you had a new stroke in the past 10 days and it was 100% due to lupus (not from hardening of the arteries)
– Do NOT mark arthritis unless your rheumatologist tells you that you have active inflammatory arthritis of 3 or more joints (joint pain and other arthritis causes do not count)
– Do NOT click psychosis or organic brain syndrome unless your rheumatologist says these are active. Lupus fog and memory problems does not count.
– Do NOT mark alopecia unless a lupus dermatologist says you have active discoid lupus in your scalp causing hair loss or nonscarring alopecia from lupus. 90% of the time, hair loss in lupus is due to other causes (stress, telogen effluvium, androgenic alopecia, CCCA, traction alopecia, alopecia areata, etc) and these do not count
– Do NOT count mouth sores due to drugs such as methotrexate
– The labs have to be exactly as bad as they state in the definitions

Good luck on your scoring!

Meaning of the SLEDAI score:

1 to 5 is mild (low) disease activity (you may or may not need better treatment)
6 to 10 is moderate disease activity (your lupus needs better treatment)
11 and higher is severe (high) disease activity (your lupus needs better treatment) 

Our treatment goal is to always try to get you into remission (a score of 0) plus not be on any steroids (like prednisone). 

However, suppose we have tried all therapies that we think are safe and proper to use for your condition. In that case, low mild (low) disease activity is a second-best goal. If you are on prednisone, we want it to be 5 mg a day or less (but no steroids is always better). 

If your SLEDAI is 6 or higher, then you should discuss other treatment options with your rheumatologist. 

VERY IMPORTANT: This calculator does not take into account what we call “Type 2 symptoms” of lupus. This looks at type one symptoms. Those are lupus problems that we can improve with medicines that calm down the immune system.

Type 2 symptoms are by far the hardest part of lupus to treat. These are the overall body pain, severe fatigue, trouble with memory, “lupus fog,” and sleep problems.  I wish we had better treatments for these. This is a big unmet need in the treatment of our SLE patients. I’ll do a post later that discusses Type 1 vs Type 2 symptoms.

This method (as well as others) of measuring disease activity is not perfect. For example, suppose you have class IV lupus nephritis (kidney inflammation), your urine protein level (proteinuria) is 3 grams per 24 hours, your blood pressure is 190/110 (very high), your kidney function is decreased, and all other labs are normal. Your SLEDAI score is 4 (mild). However, all rheumatologists would agree that you have high disease activity (severe lupus) and are at increased risk for kidney failure if not treated aggressively.

Another example would be having a faint butterfly (malar) rash for 2 points and 3 slightly tender joints in the middle of the fingers with minimal discomfort (4 points). This person would be considered to have moderate disease activity in a research study using the SLEDAI score. However, it could be argued that this person is better categorized as having low disease activity.

All SLEDAI Scores Are Not the Same!

Two SLE patients can have the same SLEDAI score, yet one can have much more severe lupus than the other.

For example, an SLE patient with lupus nephritis (kidney inflammation) that has excess protein in the urine (proteinuria) severely decreased kidney function (kidney failure) due to the nephritis. Inflammation around the heart (pericarditis) has a SLEDAI score of 6. This would be categorized formally as “moderate” disease activity. Yet, most everyone would agree that this is “severe.”

Another SLE patient could have a platelet count of 90,000 per cubic milliliter (mildly low), an elevated anti-dsDNA level, and a low C3 complement level. This would also be a SLEDAI score of 6. I would consider this a case of “mild” SLE and is much less severe than the patient above who has life-threatening lupus without aggressive treatment (strong immunosuppressants).

SLEDAI scores can help rheumatologists learn how to measure their patients’ lupus more accurately

And how can a rheumatologist make the mistake of thinking someone has mild SLE that does not need additional treatment, yet she has worse disease than he thinks?

Suppose a week ago, you had your typical monthly lupus flare. You were fatigued. And you had arthritis pains in multiple joints that kept you from doing all usual activities during your menstrual cycle. As usual, the flare resolved after a few days, and when you see your rheumatologist, you tell him that you feel great except for those few days. Physical exam shows 3 mildly tender joints, some small sores on the roof of your mouth that you don’t notice, and your labs show a slightly elevated anti-dsDNA and a mildly low C4 complement level.

Many rheumatologists would consider you as having “mild” lupus. You had a “mild” flare that only lasted a few days, and the physical exam only shows a few tender joints and mouth sores that you do not even notice. However, suppose you measure the SLEDAI score. In this case, you have a total of 10 points (arthritis, mucosal ulcers, increased DNA, and low complement). You clearly have moderate disease activity, bordering on HIGH disease activity.

Research studies show that even mild flares increase ongoing organ damage over time. You clearly need better therapy to control your SLE. This is a reason why we think it is a good idea for rheumatologists to measure the SLEDAI on their SLE patients. It can help them get a better understanding of how active their SLE is. ​​

I always recommend: Be proactive in your health care. Knowledge is power

How active is your lupus?

Please leave comments. Click on COMMENTS above.
​What experiences and advice do you have?

Author

Donald Thomas, MD author of The Lupus Encyclopedia and “The Lupus Secrets

REFERENCES: Look under chapters 5, 19, and 29 at this link: https:///www.lupusencyclopedia.com/references.html

9 thoughts on “How Severe is Your Lupus? Use a Lupus Severity Index

  • November 23, 2020 at 11:17 am
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    Hi, this is great! The more concise the better. One problem I have is that the “stage2” symptoms you refer to… my rheum gave those symptoms the diagnosis of fibromyalgia.
    This is good for me because there is a wealth of information to help me understand this new type of symptoms in my life; however, this is a bad thing because I believe the diagnosis of fibromyalgia got me terminated from my lo g term disability insurance through my teacher plan. Unbelievable frustration and injustice, but I digress.
    If more lupus people knew their all over body pains, stiffness, sore body, sleep problems, more neurological manifestations stemmed from them now developing fibro, I think it would help a lot of people.
    I got “fibro” (aka, this “more” broken and achy body) about 15 years after the lupus. Apparently toy my CNS system just broke from the pain. That’s what we’re told anyway… which might make sense.
    Could you please pass on to me your thoughts on this difference between fibro vs lupus symptoms? Thanks!
    Heather

    Reply
    • November 23, 2020 at 6:22 pm
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      Heather: This will definitely be the topic of a followup blog article. You rheumatologist is probably correct. Fibromyalgia is the most common cause of “type 2 symptoms.” By far the most difficult part of lupus to treat.
      Dr. Pisetsky and his group came up with the “type 1″ and type 2” symptoms primarily to teach doctors to be more careful with our patients. Too many lupus patients are treated with steroids when they have these symptoms… only resulting in side effects and no true help. I’d like to start spreading the word to patients so they understand why their doctors are not too good at helping them with this (this includes me). We absolutely need better treatments for fibromyalgia…. thanks for commenting, and have a Happy Thanksgiving…

      Reply
  • November 26, 2020 at 8:35 pm
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    This was very helpful in that it shows me I’m doing pretty well overall and helps me define where I should be. However, I still struggle with trying to figure out what symptoms are from my fibro, so I can determine if I need to ask for more treatment or not. I certainly don’t want to treat anything that isn’t lupus or Sjogren’s. It’s an ongoing problem that I’m glad to see you will be addressing. Thank you so much for being such a tireless advocate for us. On this day of Thanksgiving I am very grateful for you, Dr. Thomas.

    Reply
    • November 27, 2020 at 1:33 pm
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      ahhhh… thank you, Ginger. That means a lot. The biggest unmet need in taking care of our patients with lupus and related disorders is the concomitant fibromyalgia. It is a real problem that causes pain, fatigue, trouble sleeping and greatly lowers quality of life. There must be ways to treat it effectively and I hope researchers figure this out soon.
      Happy Thanksgiving to you and yours!

      Reply
  • December 4, 2020 at 5:03 am
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    I got 29. I have constant headaches, because I have constant muscle pain. My muscles seize up and I have to have regular massages to smooth them out. I’ve been told it’s like constant whiplash where my muscles are seizing up to protect me. My fatigue is off the charts right now – sleeping 15 hours a day. My face is swollen and has sores that the bacteria isn’t been kept under control. I’ve gone through all the medications on offer and starting to feel ill never get on top of it. Been diagnosed 13 years now.

    Reply
  • December 6, 2020 at 8:24 am
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    I’m at 50, I feel like I usually have things under control and I have definitely been worse before. I would hate to see what my score was then. This is definitely an incredible tool. Thank you

    Reply
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