If you have any feedback, please direct to [email protected].
Open source MacOS apps: 1. Skim PDF reader
https://www.themednet.org/question/18896?var_icqocd_id=19437328&question_id=18896&update_id=74235
https://www.themednet.org/question/19014?src=popover-search&query=systemic%20lupus%20erythematosus&pos=5#ans_21084
The following list is what I give to my patients to give to their relatives (especially children) as good habits to abide by in the hopes that they may reduce their risk of evolving to SLE. I do tell them the evidence is not overwhelming at all, but there are studies to suggest these may help, and they make sense theoretically. Links are provided for many of these (FEEL FREE TO COPY AND HANDOUT TO PATIENTS): Abide by UV light protection Floss and brush teeth at least once daily to help prevent periodontal disease Have your vitamin D level monitored; take a vitamin D supplement if it is less than 40 ng/mL Never smoke cigarettes Avoid secondhand smoke Avoid sulfa antibiotics (add to allergy list) Do not eat alfalfa sprouts or mung bean sprouts Consider healthy use of moderate alcohol drinking when old enough (talk to your physician first) Eat a diet rich in omega-3 fatty acids (flaxseed, cold-water fish, chia seed, walnuts, etc.). I prefer this over supplements. Consider eating “resistant starches” regularly (legumes, peas, overnight oats, etc.) Avoid occupations and hobbies with exposure to potential lupus triggers (such as silica) Consider decreasing exposure to phthalates (lipstick, plastics, cosmetics) Learn to cope with stress; do daily breathing exercises; practice mindfulness daily Get at least 7 hours of sleep each night Avoid the herbal supplement Echinacea Avoid exposure to pesticides Avoid using hair dyes (English et al., ACR 2019 and Smyk et al., PMID 26000137)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9466985/figure/F2/
Improvement in the Composite Measure of Raynaud's Phenomenon: The Raynaud's Phenomenon activity is assessed using the Raynaud’s Condition Score (RCS) with six core measurements: PGA-VAS; CGA-VAS; average attacks per day, duration of attacks and attacks symptoms. Reduction of the Digital Ulcer burden: The digital ulcer burden is measured by the reduction in the number of new digital ulcers, Reduction in the total number of ulcers, time to complete healing and patient reported pain reduction and improvement in hand function. Improvement of the ScleroID: A patient reported outcome measure, developed by EULAR, which measures the impact of Raynaud, Fatique, Hand function, Pain, Upper GI symptoms, Life choices, Lower GI symptoms, Body mobility, Dyspnoea and Digital ulcers Delay in the onset of organ involvement or organ damage progression measured by SCTC-DI: The Clinical Trials Consortium Damage Index (SCTC-DI) quantifies the organ damage in systemic sclerosis. The 23-item SCTC-DI captures damage that is reflective of both morbidity and mortaility in each of the six major organ systems affected: Vascular, Gastrointestinal, Respiratory, Cardiovascular, Renal, Musculoskeletal and skin. Improvement in the ability to work (WPAI): The Work Productivity and Activity Impairment (WPAI) questionnaire is a tool to measure the impact of health problems on work productivity and daily activities. The WPAI measures the follwoing domains: Absenteeism (Work Time Missed), Presenteeism (Impaired Productivity at Work), Overall Work Productivity Loss, Activity Impairment (Outside of Work) Improvement of the gastrointestinal symptoms measured by the UCLA GIT 2.0: The University of California Los Angeles Scleroderma Clinical Trials Consortium gastrointestinal tract 2.0 (UCLA GIT 2.0) questionnaire is a self-reported tool measuring gastrointestinal (GI) quality of life in systemic sclerosis (SSc) patients. Renal: Placebo corrected change in proteinuria (UPCR or UACR) from baseline placebo corrected change in eGFR from baseline: Renal: Improvement or stabilization of renal functioning in patients with albuminuria and/or CKD stage 3a or higher (either eGFR<60 ml/min per 1.73 m2 and/or UACR>30 mg/g)
https://www.bmj.com/content/384/bmj-2022-070856