One Patient's Positive Perspectives

HSS Lupus and General Health Updated AnnoucementThis afternoon at work included an unusual break from other duties, by joining a one-hour Facebook chat “Lupus and General Health” that was hosted at 5:30 EST/2:30 PST by the Hospital for Special  Surgery (HHS), Molly’s Fund and the Lupus Foundation of America.  Questions were submitted through reader’s comments after the first HHS welcoming Facebook post, and each of the panel members wrote responsive comments to answer almost most of the questions that were submitted.

My question about Benlysta was answered by Peggy Crow from HHS:

Lupus Adventurer: How might extended Benlysta infusion therapy affect lupus biomarkers, such as ANA titer, etc.?

Peggy Crow: To Lupus Adventurer. That’s a really interesting question. In fact some of my research colleagues and I were just asking ourselves a related question today. When the clinical trials were performed, some biomarker and autoantibody data were tested, but not much. As I recall, some antibody levels decreased a bit, but not all of the antibody types. I doubt that the ANA would disappear. In any case, it’s a great question and one that deserves more research. Understanding effects of a drug on biomarkers can help us understand more about what is going on with the immune system in lupus

Lupus Adventurer:  I ask because my biomarkers are now quiet, after 20 years lupus treatment, with methotrexate, imuran, plaquenil plus clincial trial of Rituxan (amazing) and now almost 3 years of Benlysta. Previous ANA would be in the 1:1300 range, now 1:40. Symptoms are quite moderated again with Benlysta, but I am curious about the correlation between this medication and biomarker activity. Thanks!

Peggy Crow:  L.A. It is really great to hear that you are doing much better than in the past. What I would say about Benlysta and ANAs is that while I doubt that the Benlysta would directly reduce the antibodies enough to bring down the ANA titer as much as you describe, it is certainly possible that you have shown a good therapeutic response to Benlysta and the generally reduced disease activity is being reflected in the lower ANA titer. Benlysta works well in some but not all lupus patients. So it sounds like you are one of the fortunate responders.

Lupus Adventurer: This gives me something to think about and discuss with my doctor. Thank you so much for your response!

th24684V04Click on this Hospital for Special Surgery link to go to the HHS Facebook page and read the all the readers’ questions and the panel’s outstanding responses.  This was an excellent event with a knowledgeable panel and sponsors!


Comments on: "Lupus and General Health Facebook Chat – Hospital for Special Surgery" (1)

  1. We are so glad that you found the HSS chat helpful- We are so pleased to have been involved!

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