The Latest Research Answers the Question:
“Can discoid lupus turn into systemic lupus erythematosus?”
“Can discoid lupus turn into systemic lupus erythematosus?”
– 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”
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.
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
7 Comments
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
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
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
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!
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!
I am sure I have SLE after having discoid lupus for nearly 10 long exhausting years. Testing takes forever/what can I do? I am a 69 yr old female also have RA….thanks for any help!! Victoria Lor
Victoria: Consider asking your doctor to order the AVISE Lupus test. You can print out an order form, fill it all out to make it easy for your doctor (check AVISE Lupus test, AVISE CTD, and SLE monitor at a minimum). Then use their draw site lab locator to find a lab near you where you can get it done.
That is what I would do if I thought I may have SLE and the usual insurance labs were not being helpful.
Donald Thomas, MD