Immunosuppressants and COVID vaccine: which you should stop and not stop
American College of Rheumatology Clinical Guidance Summary UPDATED AUG 2021
The above come from the ACR published guidelines. You can find the entire article here
Revised with new drugs to stop for vaccines 9/12/21. However, they were again updated in August 2021. The above photo
Bottom Line: Now it is recommended to stop immunosuppressants after the booster shot. These recommendations are quite puzzling to me. Note how they recommend stopping immunosuppressants for two weeks after getting the COVID-19 booster shot. However, they state that immunosuppressants such as azathioprine do not need to be stopped for the initial shots. The committee that formed these has a meeting after this August publication and I hope that they change the recommendations to be more uniform. After seeing these recommendations, I am recommending that my patients stop their immunosuppressants for all vaccines to help them work better (if they are not at high risk of flaring).
How about having a sulfa drug allergy and COVID vaccine? I hope the reader is aware that everyone with systemic lupus should avoid sulfa (sulfonamide) drugs. They can flare lupus. However, it is completely safe to get your COVID-19 vaccines.
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
Systemic Lupus Erythematosus (SLE) can go into a lupus remission on medications or treatment
“My doctor told me last week that she has seen lupus go away in some patients. She said she thinks I am one of them. Is this true? Can lupus “go away”?
“True SLE does not go away. However, it is possible to go into “remission on therapy” Also… another scenario… it is not uncommon for a systemic autoimmune disease to appear like it is one type, but evolve over time showing that all along it was something else (like in chapter 1 of my book).”
Do not automatically stop hydroxychloroquine if your eye doctor tells you your patient has HCQ-retinopathy!
Heed my practical advice below
credit: By Wies6014 – Own work, CC BY-SA 4.0, httpscommons.wikimedia.orgwindex.phpcurid=77634880
The hydroxychloroquine eye tests, SD-OCT and VF 10-2, can have false positives.
PEARL: Don’t stop your lupus patient’s most important medicine without doing the following:
– If your ophthalmologist advises you to stop HCQ based upon the hydroxychloroquine eye tests 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 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.
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.
How should we deal with immunosuppressants and the COVID vaccine for immunocompromised patients? In 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.
– Do not do any of these without asking your rheumatologist first (let them know that you did read these up to date recommendations here)
– 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)
The link to the full recommendations is below at the bottom of the post.
Drug recommendations summary:
On their August 2021 revision of the guidelines, they stated that “Except for glucocorticoids and anti-cytokine therapies (see footnote), hold all immunomodulatory or immunosuppressive medications for 1-2 weeks after booster vaccination, assuming disease activity allows.” for supplemental dosing (e.g. booster doses.
Yet, they did not change their recommendations for initial COVID vaccines.
This presents some questions.
Why is it not recommended to stop some of these same drugs (such as azathioprine) for the initial dosing? It seems it would be just as important to do so.
Also, hydroxychloroquine is an “immunomodulatory,” yet there is not good evidence that it prevents vaccines from working.
What I am doing in my practice regarding immunosuppressants and vaccines to include COVID vaccines in immunocompromised patients :
Recommend that my patients stop immunosuppressants for 2 weeks after all vaccines in order to hopefully have them work better. Some drugs, such as rituximab, mycophenolate, and abatacept: I will go by the recommendations higher up in the chart, unless the ACR committee changes their recommendations based upon better medical evidence.
Do not do this on your own without talking to your doctor.
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
– Lupus and hair loss can be devastating. Dr. Donald Thomas discusses how lupus causes hair loss
– The different types of hair loss are numerous and each have their own treatments. Learn about these possible causes of hair loss.
-Lupus and hair loss symptoms can vary between the different causes. Learn how they can differ. For example, lupus hair breakage where there are short hairs at the frontal areas of the scalp is often times called “lupus hair.” This type of hair loss usually grows back with treatment of the lupus.
– The “difference” between alopecia and hair loss. They mean the same thing. Learn about the origins of the word “alopecia.”
– What you doctor can do to help hair loss in lupus. Dr. Donald Thomas explains why it is so important to see a dermatologist who is experienced in taking care of hair loss.
– What you can do yourself to help ensure you get the best medical care, a proper diagnosis, and the best treatments available.
– Have a “Plan” for when discoid lupus hair loss flares! Discoid lupus flares can leave more skin damage and hair loss each time they occur. The faster you stop the inflammation, the better.
– Dr. Donald Thomas explains what treatments work and which do not. He discusses many tips and tricks. For example, did you know that if you take biotin, it should be stopped a few days before all labs? Learn why in this video.
– Did you know that over-the-counter minoxidil is your best best to improve many causes of hair loss? More people try biotin because it is easy to take a tablet every day. Minoxidil requires that you rub it in the scalp twice daily. It is more work, but much more likely to help.
– What you should not waste your money on when it comes to hair loss in lupus. Learn what is the most effective over the counter treatment.
- Much of the time… it is NOT lupus… learn how to tell and get the proper help