Can Discoid Lupus Turn into Systemic?- “Sure” Now more about the truth

The Latest Research Answers the Question:

“Can discoid lupus turn into systemic lupus erythematosus?”

Discoid lupus erythematosus on the cheek of a white woman with systemic lupus
Discoid lupus: note the round “disc” shape, the outer active inflamed border is pink, the central area has scar tissue

“Can discoid lupus turn into systemic lupus erythematosus?”

– The above photo is a classic example of discoid lupus
– Around 15% of people with systemic lupus erythematosus (SLE) will also have discoid lupus erythematosus (DLE)
– If someone develops DLE by itself, it can potentially evolve to SLE over time
– SLE will develop in 25% to 30% of children who have DLE
– In adults, it depends upon how extensive the DLE is:
     – if the DLE is just above the neck (localized DLE), that person has approximately a 10% chance of SLE
     – If the DLE is above and below the neck (generalized DLE), there is a 1 out of 4 chance of evolving to SLE

A ray of hope

– People who have DLE that evolves to SLE tend to have a milder form of SLE. They are less likely to have severe organ involvement, such as lupus nephritis (kidney inflammation) compared to SLE patients who do not have DLE
– However, this rule is not 100%. There are some DLE patients who will develop severe SLE. This more commonly occurs in those with severe DLE that is generalized.

– Make sure to follow all the advice in the “Lupus Secrets” to ensure you have the greatest chance of not developing severe SLE

If you have discoid lupus… what is your experience and advice for others. COMMENT above

Author

Don Thomas, MD, author of “The Lupus Encyclopedia” and “The Lupus Secrets

The above photo is courtesy of Johns Hopkins Press upcoming 2nd edition of “The Lupus Encyclopedia”

References:
Arkin LM, Ansell L, Rademaker A, et al. The natural history of pediatric-onset discoid lupus erythematosus. J Am Acad Dermatol. 2015;72(4):628-633. doi:10.1016/j.jaad.2014.12.028

Chong BF, Song J, Olsen NJ. Determining risk factors for developing systemic lupus erythematosus in patients with discoid lupus erythematosus. Br J Dermatol. 2012 Jan;166(1):29-35. Epub 2011 Dec 5.

Izmirly P, Buyon J, Belmont HM, et al. Population-based prevalence and incidence estimates of primary discoid lupus erythematosus from the Manhattan Lupus Surveillance Program Lupus Science & Medicine 2019;6:e000344. doi: 10.1136/lupus-2019-000344

Pons-Estel, G. J., Aspey, L. D., Bao, G., Pons-Estel, B. A., Wojdyla, D., Saurit, V., … Drenkard, C. (2017). Early discoid lupus erythematosus protects against renal disease in patients with systemic lupus erythematosus: longitudinal data from a large Latin American cohort. Lupus, 26(1), 73–83. https://doi.org/10.1177/0961203316651740

5 thoughts on “Can Discoid Lupus Turn into Systemic?- “Sure” Now more about the truth

  • April 13, 2021 at 9:36 pm
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    I have discoid lupus and very much appreciate this information so thank you, Dr. Thomas! So far I have severe hair loss, dry skin especially on my arms and legs and capillaritis on my legs below the knees. It has been a distressing 5 years since I was first diagnosed and I’m still getting used to this new life. I do not have red discoid spots or SLE. There is lots of information about SLE but it seems hard to find current information about DLE. I purchased your book 5 years ago and it is my best resource book. I also very much appreciate your internet presence and willingness to share the latest research and news. Thanks for reminding me to read “The Lupus Secrets” again. With gratitude, Jane

    Reply
  • April 14, 2021 at 12:18 pm
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    Jane: So sorry to hear about your hardships with lupus. Although treatments are getting better and better, we have these huge unmet needs for prevention, getting it under control faster (and safe than with steroids), and hopefully. Thanks for letting me know that my posts are helpful. It motivates me to keep doing what I’m doing … May your future get better!
    Dr T

    Reply
  • April 14, 2021 at 2:48 pm
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    Dr. Thomas: Thank you for your reply and encouragement. I did take plaquinel for about 2.5 years but stopped in 2018 with the approval of my dermatologist because it did not seem to stop the hair loss and I was afraid of longterm side effects. Was this a mistake to stop? Should I take plaquinel possibly for the rest of my life to prevent future hair loss? I’m not sure what to do now. Thanks so much, Jane

    Reply
  • April 14, 2021 at 2:54 pm
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    Jane: For continued inflammation from discoid lupus, if Plaquenil does not get it into remission (our goal), we would add another medicine to it (combination therapy). Possible drugs include methotrexate and mycophenolate and Benlysta. Taking Plaquenil increases the possibility of remission compared to taking the other drug by itself. Strict UV light protection, eating an anti-inflammatory diet, staying away from second hand smoke, having your vitamin D level at 40 or higher are all important measures as well… good luck!

    Reply
    • April 15, 2021 at 9:56 pm
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      Dr. Thomas: Thank you for your considerate response and additional information. I am considering starting Plaquenil again and appreciate the combination therapy information. In my case it seems to be unclear how much of the hair loss is due to discoid lupus and how much is due to hereditary hair loss. I hesitate to start the Plaquenil again if the problem is the hereditary hair loss and not the discoid hair loss.
      Thank you again!

      Reply

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