QUESTIONS THAT MATTER TO PATIENTS!Watch this YouTube video -- patients' important questions are answered about living with lupusThis presentation (link below) is published on YouTube by lupus warrior Kelli Roseta of "More Than Lupus" Moderator and questions are asked by lupus warrior Molly McCabe Lupus questions about "The Lupus Secrets" and living with lupus are answered by Don Thomas, MD Topics include: Hydroxychloroquine (Plaquenil) dosing, safety, how to avoid eye problems Belimumab (Benlysta) safety and helpfulness for lupus How long does it take for Benlysta to work? Which lupus patients are the best candidates for Benlysta treatment Genetics and epigenetics that can predispose people to getting lupus Why lupus occurs more often in people of color (African descent, Hispanic, Asian, indigenous peoples) The treatment of lupus and rheumatoid arthritis overlap, also called rhupus What is the significance of an antinuclear antibody (ANA) test becoming negative in a lupus patient? How to ensure that new doctors believe your diagnosis of systemic lupus made by a previous doctor The use of hormone replacement therapy (estrogen, progesterone) in women after menopause Steroid usage in lupus. Should it be stopped? Please click on "Comments" above and share with us your thoughts on the topics and answers. Share your experience. Do you have any questions for Dr. Thomas? Please share this YouTube video to others who may benefit AuthorDon Thomas, MD, author of "The Lupus Encyclopedia" and brought to you by Kelli Roseta of "More Than Lupus" and author of "My Special Butterfly"
3 Comments
arw
11/9/2020 11:19:54 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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Don Thomas, MD
11/10/2020 07:23:01 am
ARW:
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arw
11/10/2020 12:00:12 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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Note that Dr. Thomas' posts are for informational purposes only, and are not meant to be specific medical advice for individuals. Always seek the advice of your healthcare provider with any questions regarding your own medical situation.
AuthorDONALD THOMAS, MD Archives
March 2021
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