Thanks to Dr. Jolly and everyone who participated in yesterday's COVID-19 & the Lupus Community Web Meeting. Feedback on the event has been very positive, proving that LSI is providing the support the lupus community needs during this challenging time. You can watch the entire event here.
Lupus is front page news today! The Daily Herald published "Patients with autoimmune diseases in suburbs struggle to find hydroxychloroquine." Thanks to the LSI community for sharing their stories and expertise. And if the name on the byline looks familar, it is. Kevin Dollear is my nephew. And yes, he is a genius.
Our HCQ for Lupus Patients First petition is going strong. We want 5,000 signatures before we present the petition to Governor Pritzker. The petition will benefit all patients having challenges getting HCQ refilled and is only restricting prescriptions for unfounded HCQ prescriptions - not for COVID-19 patients under a physicians care or in a study. A life lost to lupus is just as significant as a life lost to COVID-19.
As a result of the anecdotal evidence that chloroquine and hydroxychloroquine benefit in the treatment of COVID-19, lupus patients, whose lives depend on these drugs, are not able to get prescriptions filled.
Lupus patients are on a regimen of medicines to keep life-threatening flares (active disease) at bay. By upsetting the treatment regimen, they jeopardize their health.
Lupus and CoVID-19. An Update Robert S. Katz, MD and Ben J. Small, MD
Many lupus patients are concerned about how they would handle COVID-19 if they contracted the virus. The answer depends on the patient’s age and the severity of the patient's underlying lupus.
LSI is expanding our Individual Peer Support to assist during this crisis.
If you are interested in participating in this program or volunteering to talk to others in the lupus community, please complete the form here.
We ask personal information to help match participants and volunteers. We will not share your information with anyone without getting approval from you. If you have additional questions, please contact email@example.com.
COVID-19 & Lupus Web Meeting with Dr. Rosalind Ramsey Goldman
Updates & Additional Questions since the Web Meeting on 4/2/20
Updated information is the change in CDC recommendations to use a mask. There was more talk about just talking as a way that the virus might spread.
Still the most important things to do are:
Social (physical distancing)-6 feet rule;
frequent hand washing;
also wash high touch areas;
stay home as much as possible
Face masks prevent you from spreading the virus especially early on when you might be asymptomatic, but face masks do not prevent you from getting it so please do the important health care measures
Please take care of yourselves: refer to the wellness links provided earlier
This is hard to do, but necessary to take care of ourselves
Q: What are some immediate things we can do or add to our diet to give our immune system an extra boost? (i.e. foods to eat, vitamins to take, fruits to eat.)
A: I am not aware of an immune boosting diet for lupus. However, we recommend a well balanced diet with fruits and vegetables, whole grains, lean protein, and if you don’t eat dairy or green vegetables and avoid the sun you may want to take a vitamin D supplement. Avoid processed foods and limit consumption of sugar sweetened beverages and desserts. I know there are “immune boosting” diets online or recommended by some practitioners. I think if the recommendations are similar to what I stated at the beginning of this paragraph.
Q: Would plasma from recovered patients be more effective than the vaccine for SLE patients?
A: The efficacy of plasma infusions for COVID-19 is experimental. This strategy has been tried for other infections and it does not always work. Therefore, it should be done under supervision either in the hospital or part of a clinical trial. Once we have scientific evidence for how or if to use this treatment, we will be able to provide more specific guidance.
COVID-19 Global Rheumatology Alliance This registry is for healthcare providers to enter data about their rheumatology patients with COVID-19 infections. It is hosted on the REDCap survey platform at UCSF.
These sites provide reliable information on COVID-19- - Click the image to be directed to the website. If you have questions, please contact us at 312-542-0002 or firstname.lastname@example.org
If you have lupus and suffer from low energy or you feel tired often, you may qualify for the Lupus Intervention Fatigue Trial (LIFT) – a study being done to test two treatment programs to help people with lupus better manage their fatigue.
STUDY OF OMEGA-3 REPLACEMENT WITH KRILL OIL IN TREATMENT OF SYSTEMIC LUPUS ERYTHEMATOSUS
The study is a 24 week randomized, double-blind controlled multicenter study followed by an open label extension treatment for another 24 weeks. The purpose of this study is to determine whether the correction of the omega-3 deficiency may reduce disease activity in SLE patients.