There's a lot of information in this email. Dr. Roberth Katz and Dr. Ben Small have written an article on COVID-19 & Lupus Updates.
Lupus patients are still having a hard time getting their HCQ prescriptions filled. LSI has written a petition to Governor Pritzker calling for him to place limits on dispensing chloroquine and hydroxychloroquine to ensure lupus patients receive medicine proven effective in the battle against the disease.
We encourage you to take a look at the petition and sign on here. You can also share your story in support of the petition here.
Social distancing may be effective but it also causes feelings of isolation. To combat that in the lupus community, LSI has expanded our Individual Peer Support activity. If you are interested in talking with someone in the lupus community through phone or email, please complete the survey at the bottom of the page here. We'll be working on matching people as soon as possible.
We have another COVID-19 and the Lupus Community web meeting scheduled for April 16th. Dr. Jolly will be the featured presenter. registration is required here.
If you have any information that may be helpful to others in the lupus community, please send it to me at firstname.lastname@example.org.
Please contact us with your questions and concerns. We are here to give you reliable, timely information.
Together we'll get through this. Together we make a difference.
Mary Dollear, President, Lupus Society of Illinois
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.
COVID-19 Individual Peer Support
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.