We are here to get your questions answered. Thanks to Dr. Jolly for helping this LSI constituent:
QUESTION: Thanks so much for keeping us informed on this pandemic. I’m no longer on plaquenil because my eyes started showing toxicity. I was put on quinacrine, another anti maleria drug. Quinacrine is becoming increasingly difficult to find, does this contain the same major ingredients as plaquenil?
ANSWER: It does. Though lower risk than chloroquine or hydroxychloroquine in regards to eye toxicity, it does carry some risk of it. Safe Use of quinacrine given her /his history of eye toxicity, needs to be run by the ophthalmologist first, and they need to be monitored for other side effects related to its use by her rheumatologist/dermatologist.
Today, we encourage you to look at the COVID-19 Global Rheumatology Alliance registry and share this with your doctor.
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. Click here for more.
We are still getting questions about how to get hydroxychloroquine or Plaquenil refilled.
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.
Advocating for yourself is still advised.
I heard this from an outstanding Support Group Leader Mari Gonzalez:
I wanted to share what I've been going through and how I'm getting my Hydroxycloriqine. Maybe my experience can help someone.
I had called Jewel-osco and the pharmacist there had told me that he didn't have my meds and couldn't guarentee he'd have it for me for April.
I then called my insurance. They helped me so much. The representative informed me that their pharmacy had ther meds and had them available. She then offered to have then sent to me via Home Delivery. I will have them at my door, god willing, on Tuesday. (MARI GOT HER DRUGS TODAY!)
I had to advocate for myself for a couple hours on the phone but it was worth it. Don't take NO for an answer. We aren't here to "sacrifice" for anyone.
If you have any information that may be helpful to others in the lupus community, please send it to me at email@example.com.
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
COVID-19 & Lupus Web Meeting with Dr. Rosalind Ramsey Goldman
COVID-19 has unique concerns for the lupus community.
Join us as Dr. Ramsey-Goldman, Solovy Arthritis Research Society Research Professor at Northwestern Medical answers your questions at the web meeting.
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.