Dr. Ramsey Goldman was kind enough to share links for wellness and exercise. (click the link for access) It's important to note that you should never start a new exercise program without discussing it with your doctor.
If you have additional questions, please forward those to me. Stay tuned for additional lupus community opportunities.
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 the most up to date information.
Together we'll get through this. Together we make a difference.
Mary Dollear, President, Lupus Society of Illinois
We are getting fewer questions about obtaining refills for hydroxychloroquine or Plaquenil. I wanted to keep the information easily accessible for those who are still having trouble:
We have 2 primary suggestions:
Start your refill process early. Your pharmacy may need to contact other pharmacies to complete your order.
Don't take no for an answer. Ask the pharmacist to order drugs from another store, find another pharmacy chain that will fill the prescription, find out when the pharmacy gets another shipment in, etc. (see the example below).
Unfortunately there is not one pharmacy we can recommend that has the drug. Here's what we know about the major pharmacies to check:
Walgreens is filling refills and individuals with new prescriptions can get only 14 days.
The feedback I'm getting is that pharmacies are prioritizing refills and turning new prescriptions away.
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 email@example.com
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.