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Lupus Encyclopedia

COVID vaccine and rheumatic and lupus drugs

2/25/2021

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This is a list of recommendations on what to do with immunosuppressant drugs and COVID vaccine

Lupus Drugs and COVID-19 vaccine
American College of Rheumatology Clinical Guidance Summary FEB 2021
The above come from the FEB 2021 ACR published guidelines. You can find the entire article here
Bottom Line:
You only need to adjust methotrexate, Xeljanz, Olumiant, Rinvoq, Orencia, cyclophosphamide, and rituximab

Please check with your doctor and ask before implementing these. Your medical condition may dictate otherwise

Resource: American College of Rheumatology ACR COVID-19 Vaccine Clinical Guidance Task Force (2/8/21). COVID-19 Vaccine Clinical Guidance Summary for Patients with Rheumatic and Musculoskeletal Diseases. Retrieved on 2/25/21 from ​https://www.rheumatology.org/Portals/0/Files/COVID-19-Vaccine-Clinical-Guidance-Rheumatic-Diseases-Summary.pdf

Author

Don Thomas, MD, author of "The Lupus Encyclopedia" and "The Lupus Secrets" 

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Can Systemic lupus go into remission?

2/18/2021

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systemic lupus can go into remission on medication
Systemic Lupus Erythematosus (SLE) can go into remission on medications or treatment
Thanks to Kelli Roseta of "More than Lupus" for sponsoring "Ask Dr. T"

Author

Don Thomas, MD author of "The Lupus Encyclopedia" and "The Lupus Secrets"

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Important advice for rheumatologists

2/14/2021

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Do not automatically stop hydroxychloroquine if your eye doctor tells you your patient has HCQ-retinopathy!

Heed my practical advice below

Normal SD-OCT in a lupus patient
Normal SD-OCT from a 24 year old man
credit: By Wies6014 - Own work, CC BY-SA 4.0, httpscommons.wikimedia.orgwindex.phpcurid=77634880

SD-OCT and VF 10-2 results have false positives. Don't stop your lupus patient's most important medicine without doing the following:

Recommendations:
- If your ophthalmologist advises you to stop HCQ based upon either an SD-OCT or VF 10-2 result, refer that patient to a good retinologist who has a mf-ERG machine
- It is a good idea to have your staff call retinologists around your area and find out if they have this capability or not

Rationale is below:

(note that this statement is made with help from retinologists Dr. Jonathan Lyons and Dr. Reshma Katira in Silver Spring, MD and Alexandria, VA respectively. They specialize in HCQ-retinopathy. This section will appear in the 2nd edition of "The Lupus Encyclopedia," but it is important to make it known widely to help our patients)

Mistakes in the medical literature
We rheumatologists, and eye doctors who do not specialize in antimalarial retinopathy (AMR) need to be careful about the subtleties of making this diagnosis and the potential flaws of the screening tests. The 2014 Browning Clinical Ophthalmology article (so often cited for its sensitivities and specificities), and their reproduction in reports (such as the 2020 Aduriz-Lorenzo article in Lupus) aimed at rheumatologists, need to be mindful of the weaknesses of these methods. HCQ is such an essential therapy for our SLE patients that stopping it due to incorrect diagnoses of HCQ retinopathy should be avoided as much as possible. We have seen this in our own practice where patients have been told they have HCQ retinopathy (based on VF 10-2 or SD-OCT testing), yet have an AMR expert identify an unrelated eye problem (using mfERG testing) as the cause for the test abnormalities. These patients have continued their HCQ with close follow-up by the retinologist, using mfERG technology.

There is a differential diagnosis for SD-OCT and VF 10-2 changes that can look like HCQ damage

It is essential to keep in mind the differential diagnosis for AMR based on these screening tests. Common causes of false-positive tests on SD-OCT and visual field testing include vitreomacular traction, retinal detachment, and age-related macular degeneration in our patients. Some less common causes of abnormalities on these tests include retinitis pigmentosa, infectious retinitis (syphilis, rubella), autoimmune (paraneoplastic) retinopathy, inherited retinal dystrophies (Stargardt disease, Bardet Biedl syndrome, enhanced S-cone syndrome, isolated bulls-eye maculopathy), pigmented paravenous chorioretinal atrophy, and traumatic retinopathy. Visual field testing can have false positives due to dry eye, glaucoma ,and cataracts.
Bull's eye retinopathy due to hydroxychloroquine
Bull's eye retinopathy should be a thing of the past, if we use mfERG, SD-OCT, VF 10-2, and VF 24-2 (in Asians) properly
Photo credit: "The Lupus Encyclopedia" edition 1
The superiority of mfERG for accurately diagnosing HCQ-retinopathy​

The Browning article states that the specificities of VF 10-2 is 92.5%, SD-OCT is 98.1%, while mfERG is 86.9%. These findings are misleading. First, in the Browning research study, HCQ was stopped in patients based upon a clinical judgment for AMR diagnosis. Second, VF 10-2 testing included both red target and white target testing. Red target testing is not as reliable as white target VF 10-2 testing. Also, a 20% error rate was allowed for VF testing, which is too high to be reliable. Third, the mfERG criteria used is not the current standard. Therefore, VF 10-2 and SD-OCT should not be used individually for diagnosis. However, they have excellent sensitivities for screening tests.

            The most recent research shows that mfERG testing has better sensitivity and specificity for AMR than either VF 10-2 or SD-OCT testing. Using mfERG and SD-OCT has 100% sensitivity for identifying ARM, while the currently accepted use of VF 10-2 and SD-OCT has only an 86% sensitivity. A British study recently showed a 95% specificity and sensitivity for mfERG in the diagnosis as a singular test (far superior to VF 10-2 and SD-OCT). Also, mfERG testing is useful for monitoring patients who have other retina problems.
​
            The highest standard of care for this issue is to use SD-OCT and VF 10-2 (white target) testing as screening tests (per the 2016 AAO recommendations). If abnormalities are present that can be seen in AMR, a referral should be given for mfERG testing by a retinologist experienced in AMR. We realize that mfERG testing is not available in all locations, so many patients will not have this luxury. In these cases, referral to a retinologist who does not have mfEFG technology would be the next best step before assuming a diagnosis of AMR. In the future, hopefully, mfERG will be more commonly available to allow even earlier identification of ARM (used as a screening test with SD-OCT) as well as allowing a more accurate diagnosis.

Author

Don Thomas, MD, author of "The Lupus Encyclopedia" and "The Lupus Secrets"

References:

Aduriz-Lorenzo PM, Aduriz-Llaneza P, Araiz-Iribarren J, Khamashta MA. Current opinion on hydroxychloroquine-related retinal toxicity screening: where do we stand now? Lupus. 2020;29(7):671-675. doi:10.1177/0961203320919499

K Broderick, MD, Harrison Ngo, BS, Reshma Katira, MD [abstract]. Evaluation of SD-OCT Results in Screening Patients in Early and Later Stages of HCQ Maculopathy. American Academy of Ophth. AAO 2020 Vision Virtual Meeting, NOV 13-15.

Browning, DJ, Lee, C. Relative sensitivity and specificity of 10-2 visual fields, multifocal electroretinography, and spectral domain optical coherence tomography in detecting hydroxychloroquine and chloroquine retinopathy. Clin Ophthalmol 2014; 8: 1389–1399.

Browning DJ, Lee C. Scotoma analysis of 10-2 visual field testing with a red target in screening for hydroxychloroquine retinopathy. Clin Ophthalmol. 2015;9:1499-1509. Published 2015 Aug 20. doi:10.2147/OPTH.S87850

Lyons JS, Severns ML. Detection of early hydroxychloroquine retinal toxicity enhanced by ring ratio analysis of multifocal electroretinography. Am J Ophthalmol. 2007 May;143(5):801-809. doi: 10.1016/j.ajo.2006.12.042. Epub 2007 Mar 6. PMID: 17336914.



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What to do with your immunosuppressant drugs to enhance vaccine responses

2/13/2021

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New guidelines from the American College of Rheumatology for the COVID-19 vaccine

Coronavirus vaccine for COVID-19 and lupus patients
COVID-19 vaccine: Please get yours!
February 2021, the American College of Rheumatology released recommendations on what to do with immunosuppressant drugs around the time of your COVID-19 vaccine. The reason for these recommendations is that some of our medicines can blunt the effects of the vaccine. Timing the drug to the vaccine to your medication can make a big difference.

ALSO: They make other important recommendations as listed below. Make sure to share this with your family, friends, and other patients

NOTE: 
- Do not do any of these without asking your rheumatologist first (let them know that you did read these up to date recommendations here)
- PRINT these out for future reference for other vaccines
- I also recommend these to my patients who get any vaccine, IF they are in remission or at low risk of flaring when they get the vaccine (again, do not do this without talking to your rheumatologist first)
- I agree with all of these, except, I differ with the methotrexate recommendation, as per below

The link to the full recommendations is below at the bottom of the post. 
Summary of vaccine recommendations for lupus patients

Drug recommendations summary:

Abatacept IV (Orencia): Time vaccine administration so that the 1st vaccine occurs 4weeks after Orencia IV (i.e.,        the  entire dosing interval), and postpone the subsequent IV Orencia by 1 week (i.e., a 5-week gap in total); no medication adjustment for the second vaccine dose
Abatacept SQ (Orencia self injectable): Hold SQ abatacept both one week prior to and one week after the first
     COVID-19 vaccine dose (only); no interruption around the second vaccine dose
Azathioprine (Imuran): No modification needed
Belimumab (Benlysta): No modification needed
Cyclophosphamide: No modification needed for pills. For the IV form, time CYC administration so that it will occur approximately 1 week after each vaccine dose, when feasible.
Hydroxychloroquine (Plaquenil): No modification needed
IVIG: No modification needed
JAK inhibitors (Xeljanz, Olumiant, Rinvoq): 
Hold JAKi for 1 week after each vaccine dose
Kineret: No modification needed
Leflunomide (Arava): No modification needed
Methotrexate: 
Hold MTX 1 week after each vaccine dose, for those with well-controlled disease
     NOTE Dr. Thomas' recommendations to his patients: "Hold MTX dose for 2 doses after each vaccine if you are doing well and in remission" (do not do without talking to your own doctor). This is based on the latest study results with the flu shot and methotrexate.
Mycophenolate (CellCept, Myfortic): No modification needed
Prednisone: No modification needed
Rituximab (Rituxan): 
Assuming that patient's COVID-19 risk is low or is able to be mitigated by preventive health measures (e.g., self-isolation), schedule vaccination so that the vaccine series is initiated approximately 4 weeks prior to next scheduled rituximab cycle; after vaccination, delay RTX 2-4 weeks after 2nd vaccine dose, if disease activity allows.
Sulfasalazine: No modification needed
Tacrolimus and cyclosporine A: No modification needed

TNF inhibitors (adalimumab, etanercept, infliximab, golimumab, certolizumab): No modification needed
Tocilizumab (Actemra): No modification needed
Voclosporin (Lupkynis): No modification needed
Stop COVID spread in lupus patients

Other important recommendations from the ACR:

- There is no preference of getting one vaccine over another (Pfizer, Moderna, J&J, AstraZeneca): Get whatever is available for you
- Lab testing is NOT required after vaccines to assess response to the vaccine
- Ask all household members, friends and loved-ones to get vaccinated to protect you (the cocoon effect)
- If you don't believe in the vaccine, get vaccinated at least to protect those you love (Dr. Thomas' addition)
- Get vaccinated even if your disease is active

REFERENCE: ACR, COVID-19 Vaccine Clinical Guidance Summary for Patients with Rheumatic and Musculoskeletal Diseases. Developed by the ACR COVID-19 Vaccine Clinical Guidance Task Force.
This draft summary was approved by the ACR Board of Directors on February 8, 2021.. A full manuscript is pending journal peer review.

Author

Don Thomas, author of "The Lupus Encyclopedia" and "The Lupus Secrets"

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Hair Loss and Lupus

2/11/2021

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How lupus causes hair loss
What you can do about it
Much of the time... it is NOT due to lupus

Learn more from Don Thomas MD and the Lupus Foundation of America

Discoid lupus causing scarring alopecia
Discoid lupus causes permanent hair loss (scarring alopecia) - it is a medical emergency!
Watch the YouTube videos below and learn:

- How lupus causes hair loss
- The different types of hair loss
- The "difference" between alopecia and hair loss
- What you doctor can do to help
- What you can do
- Have a "Plan" for when discoid lupus hair loss flares!
- What is proven to work
- What you should not waste your money on
​- Much of the time... it is NOT lupus... learn how to tell and get the proper help

Click above for part 1 above ... Part 2 below

Author

Don Thomas, MD author "The Lupus Encyclopedia" and "The Lupus Secrets"

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Hair and skin problems in lupus

2/1/2021

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Join us FEB 11, 8PM EST, 2021 for a learning seminar online about lupus, hair, skin problems!
​With practical solutions!

CLICK HERE TO REGISTER FOR THE LUPUS HAIR LOSS, SKIN PROBLEM, AND SELF-IMAGE SEMINAR
Lupus Foundation of America Seminar with Dr. Donald Thomas
LFA ZOOM Seminar on hair and skin problems in lupus

CLICK HERE TO REGISTER FOR LUPUS HAIR LOSS SEMINAR

Dr. Donald Thomas will talk about lupus hair loss (alopecia)
Dr. Donald Thomas will talk about the medical aspect of lupus hair loss

CLICK HERE TO REGISTER FOR LUPUS HAIR LOSS SEMINAR

4 Comments
    Note that Dr. Thomas' posts are for informational purposes only, and are not meant to be specific medical advice for individuals. Always seek the advice of your healthcare provider with any questions regarding your own medical situation.

    Author

    DONALD THOMAS, MD

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The Lupus Encyclopedia: A Comprehensive Guide for Patients and Families (A Johns Hopkins Press Health Book) Illustrated Edition
by Donald E. Thomas Jr. MD FACP FACR (Author)


The Lupus Encyclopedia is an authoritative compendium that provides detailed explanations of every body system potentially affected by the disease, along with practical advice about coping. People with lupus, their loved ones, caregivers, and medical professionals―all will find here an invaluable resource. Illustrated with photographs, diagrams, and tables, The Lupus Encyclopedia explains symptoms, diagnostic methods, medications and their potential side effects, and when to seek medical attention. Dr. Donald Thomas provides information for women who wish to become pregnant and advises readers about working with a disability, complementary and alternative medicine, infections, cancer, and a host of other topics.

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