Living With Lupus Blog: The Lupus Encyclopedia – Q & A Video

3 Comments

1. 

   arw

   November 9, 2020 at 11:19 pm

   Thank you for this very interesting talk. I’m curious – when you say Benlysta may be a good option for those with high anti ds-dna and low complements, what lab ranges do you have in mind for “high” and “low?” What about anti ds-dna = 17, C3 = 65, C4 = 11? For context, my main lupus complaint is pervasive exhaustion (and yes, I do follow the lupus secrets). Would it be reasonable to discuss adding Benlysta with my doctors, or will they think I’m crazy and should leave well enough alone? A year after diagnosis and starting hydroxychloroquine, I’m still trying to find the line between too whiny/paranoid and too complacent. I’m not sure what would qualify as remission, but I don’t feel like this is it.

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2. 

   Don Thomas, MD

   November 10, 2020 at 7:23 am

   ARW:
   PLEASE do not think you are being “whiny!” Fatigue from SLE is a horrible problem that greatly interferes with quality of life. It is real. You should constantly search for ways to help it (better treatment of your SLE, getting good quality sleep, eating well, exercising regularly, etc.) I have had numerous patients develop significantly better energy levels after successful treatment with Benlysta (belimumab).
   Having a high anti-dsDNA and low C3 or C4 indicates that their is significant immune system activity with systemic lupus. In medical terms, we know that there is activation of the complement pathway. B-cells are the cells that produce anti-ds DNA and are directly involved in the immune system’s activity with complement activation.
   The studies show that those patients with these abnormalities (it does not matter how abnormal) are most likely to respond to Benlysta. If I had lupus and if hydroxychloroquine did not have me in remission, knowing what I know, I’d ask my provider if I could try Benlysta, especially if I had these lab values.
   Good luck and thanks for reading my posts and commenting.

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     arw

     November 10, 2020 at 12:00 pm

     Thanks for the response. In the past when I have asked whether further treatment is warranted, the answer has been “we don’t treat these labs, they just tell us that we need to watch you closely for effects that would need to be treated” (e.g., elevated ESR/CRP or blood/protein in the urine). So it seems like adding a biologic would be a stretch, especially since they are incredibly expensive. But, I can certainly throw it out for discussion.

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