Q&A about living with lupus

11/8/2020

QUESTIONS THAT MATTER TO PATIENTS!

Watch this YouTube video -- patients' important questions are answered about living with lupus

Questions about lupus treatments and living with lupus

This 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?

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Author

Don Thomas, MD, author of "The Lupus Encyclopedia" and brought to you by Kelli Roseta of "More Than Lupus" and author of "My Special Butterfly"

Disclosure:
Dr. Thomas is on the Speakers' Bureau of GlaxoSmithKline for belimumab (Benlysta). He mentions this in his answers as well in the video

3 Comments

The Lupus Encyclopedia: A Comprehensive Guide for Patients and Families (A Johns Hopkins Press Health Book) Illustrated Edition
by Donald E. Thomas Jr. MD FACP FACR (Author)

The Lupus Encyclopedia is an authoritative compendium that provides detailed explanations of every body system potentially affected by the disease, along with practical advice about coping. People with lupus, their loved ones, caregivers, and medical professionals―all will find here an invaluable resource. Illustrated with photographs, diagrams, and tables, The Lupus Encyclopedia explains symptoms, diagnostic methods, medications and their potential side effects, and when to seek medical attention. Dr. Donald Thomas provides information for women who wish to become pregnant and advises readers about working with a disability, complementary and alternative medicine, infections, cancer, and a host of other topics.

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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.

Don Thomas, MD

11/10/2020 07:23:01 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.

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.

Lupus Encyclopedia