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COVID-19 Live Forum Part I | Frequently Asked Questions

How are you handling new patients? Are you seeing them in the clinic and then follow-ups via telehealth?

  • We are seeing even new patients via telehealth, but have the option of seeing in person if needed

  • We are still seeing new patients in person. We are spacing them out by one hour so no one is in contact with each other. All other visits are done via telehealth or phone only calls. We are still doing infusions but using the exam rooms so patients are spaced out more.

  • We are seeing urgent new patients in the clinic, for example we had 2 new GCA patients, I had 1 new onset SLE and a new RA with chronic interstitial lung disease. By staying on top of our routine follow ups via TeleMed, we should be in a good place to get those routine New Consults within 6-8 weeks. We are also running our infusions suite with 24 infusions a day and Prolia in private rooms.


Reports of possible aerosol transmission (outdoor choir practice in Washington State) plus Icelandic reports of asymptomatic patients spreading virus, should we ALL be in masks?

  • The CDC now recommends the use of cloth face coverings, especially in areas of significant community-based transmission. We need to listen to the CDC Guidelines and protect ourselves and others.


What IL-6 did you say was being used?

  • Tocilizumab (Actemra ) and Sarilumab (Kevzara) are being used off-label and in clinical trials to treat COVID-19; Clazakizumab is another anti-IL6 that is NOT FDA approved but is being used in clinical trials.

Where patients are being treated with hydroxychloroquine, do they get better, does it seem to help?

  • We do not have enough data to know at this time.  Registries as well as randomized clinical trials are underway.

  • There are anecdotal reports of improvement but in most cases patients were on multiple agents so clinicians are unable to say definitively if it was the HCQ, something else, or a combination that led to improvement.


How are outpatient rheumatology clinics dealing with the HCQ shortage?

  • Some pharmacies are getting stock in of HCQ in limited supply, but it may take a few extra days.  Also, many mail order pharmacies still have supply.

  • Supplies may vary by state due to different restrictions put in place by state governments. Our providers are only writing for 30 day supplies (even if the patient used to get a 90 day supply) to try to ensure that there is enough HCQ to go around.

  • As of 4/8/2020, there are now Prior Auths in place that ask about diagnosis including COVID. I had a new onset SLE and had no problem attaining this after filling out the PA with the CD 10 code for SLE, and submitted with my office note. Patients that have been receiving, have no problem getting routine refills.


There is a trial being done in Germany and Australia, regarding vaccination with BCG and possible protection from COVID-19. Please comment on how the BCG vaccine changes the immune system?

  • This is a little counter intuitive but probably is trying to explain the concept of "trained memory" stimulating innate immunity with BCG in animal models. Some evidence from children is that the BCG vaccine protects them from other infections.

  • There is some preliminary data showing that the case fatality rates from COVID-19 are significantly lower in countries with BCG revaccination practices compared to countries where it is not.


Are there any studies or evidence suggesting patients on chronic use of Plaquenil (such as RA and Lupus patients) have some protection in some way from COVID-19?

  • Registries that have recently emerged are collecting this information.

  • There have been several case reports of patients already on HCQ (for rheumatic diseases) testing positive for COVID-19, indicating that it is not 100% effective at preventing infection.

What is the benefit, if any, of adding azith to hydroxychloroquine?

  • Unknown. Registry data should help us sort this out. What is known is that azith + HCQ increases the risk of cardiac related adverse events.

I have heard that some rheumatology professionals are not starting immunosuppressive therapy (i.e. methotrexate, prednisone) to biologics. What is your take on this?

  • Historically before the biologics were readily available, patients with autoimmune disease were hospitalized as frequently as diabetics. Not treating patients will allow inflammation and CVD risk rise.

  • Learning what we know about the cytokine storm that happens in some with COVID-19 we do not want our patients to be at risk. Best practice is to do no harm and treat as we would but caution our patients who become ill to hold their biologics until they are off antibiotics or infection has resolved.  

  • In patients with moderate to severe active disease agree with above. Not treating is likely a greater risk than treating. However, in patients with mild disease we are trying to keep them comfortable with 5 to 7.5 mg prednisone per day rather than start a brand new medication. Our concern is that if they have an adverse reaction to the new medication they may have to go to the ER, which is exactly where we do NOT want them to be. So in those cases starting the new med may pose more of a risk than not starting.

What methods are you using for virtual visits?

  • Some EMR has telemedicine built in and others use the American Well platform. If that is overwhelmed we use Facetime or Google Duo. If none of those are options (i.e. the patient does not have a smartphone or tablet) we simply call them on the phone.

  • Another option is with no added cost options. Again, if it does not connect, facetime or smartphone capabilities are the best options. It is interesting as you will find many grandparents have just learnt these options now this is how they are having to communicate with their families. Others have only a flip phone. Insurances are going to be lenient over the next 8 weeks. Most patients on stay in place orders are very happy for you to call via phone, then you can use that platform to take them through the familiarity of video options. This is a lot more work on our part, however it helps our patients feel comfortable with these new visits and they appreciate the visit. We are seeing reimbursement coming through for these visits.

I see there is a JAK inhibitor being studied for COVID looking to see the rate of ARDS and the role of CRP and TNFa. Could there be a benefit to this suppression for COVID patients?

  • This is an area of controversy. Artificial intelligence computer modeling has indicated that several JAK inhibitors may be beneficial to patients with cytokine storm from COVID-19 due to their powerful antiinflammatory properties. However, when JAK-STAT signalling is blocked, the immune system’s normal interferon-mediated response to viruses is impaired. This is one reason shingles is an issue with this class of drugs. Even though the same degree of risk is not seen in approved JAK inhibitors in terms of viral respiratory illnesses (the rates of serious infection are similar to the biologics;), it would seem that impairing the body’s ability to fight viruses is detrimental to someone with an active viral infection such as COVID-19. HOWEVER, a non-rheum JAK inhibitor (ruxolitinib) is in phase 3 clinical trials as a treatment for cytokine storm in COVID-19 patients. Bottom line: not ready for prime time in the outpatient setting. Look for results of studies coming out of the ICU.


  • As steroids can predispose our patients to infection, we should use as little steroids as possible. Often patients come in for shots of depo when they are flaring. We have educated our patients that is not a safe option right now. We recommend epsom salt soaks, gentle stretching, magnesium for muscle pain and tylenol instead.

  • For rheumatic diseases: Our clinic has been okay with patients taking 5 to 7.5 mg prednisone per day as long as they are practicing strict social distancing. The lower the dose, the better. Zero mg would be ideal, but sometimes it’s just not possible. For COVID-19: avoid use of glucocorticoids in patients with early disease as it may dampen the ability to fight off the infection. However, if a patient develops acute respiratory distress syndrome, high-dose GC are often used. This should only be happening in the ICU setting.

So, if there is a new RA or Psa, do you tell them they just have to wait to start treatment?  Continue their NSAIDs?

  • Mild new RA/PsA: yes. Continue NSAIDs, topicals, conservative treatment. Moderate to severe new RA/PsA: treat as you would in the pre-COVID era, just make sure to educate patient about STRICT social distancing.

  • Following the treatment paradigm, having tried to use Plaquenil on mild early RA, others that have not been controlled on maximum doses of MTX, yes have initiated a biologic. PsA, Otezla is an option to start. AxSpA/nr -axSpA who have failed NSAID, I have proceeded with a biologic. I educate as I do with regards to all infections at any new start, now including CDC guidelines for COVID.

We have had a number of patients asking for direction on whether they should be working as their jobs are considered “essential”. Our clinic typically has steered clear of recommending against work as we do not want to be involved with disability paperwork (short term or long term).

  • We have a template letter the patient can give their employer.  In general, it is stated that while there are no CDC or ACR guidelines, given the immunosuppressive status, if it is possible, we would recommend they work remotely.

  • Agree with recommending a remote position, we are encouraging work and avoiding writing these patients out of work.

Is there a role for pulse dose steroids in cytokine storm?

  • Often there is a role for high dose or pulse steroids when a patient is in ARDS. A patient requiring this level of intervention would be in the ICU, not the outpatient rheumatology clinic.

How do people get Prolia/Evenity patients treated?

  • If possible, we have the patients come in. This is one of the reasons we are asking everyone else, even new patients, to be seen virtually - to try to create as safe an environment as possible for patients who simply must be seen in person (injection/infusion). We remind patients that the data is clear that rapid bone loss and multiple vertebral fractures occur with discontinuation of denosumab, as early as 7 months. If they absolutely cannot or will not come to the clinic, we try to get a home nursing agency to give it to them. If we can’t do that, we switch to a bisphosphonate.

  • We are doing the office visit as Telemed, at which time it is reinforced that if the injection is missed there is a risk of rapid loss of BMD and increased risk of fracture. At that Telemed visit the approval is sent, patient scheduled for a 6 month follow up, then patient scheduled for labs in our office, then the patient returns for the injection. Our office has the Prolia and infusion patient’s drive into the parking lot. We have a tent and the assigned MA goes to the patient’s vehicle, triages with questions and temp. The patient is checked in via walkie talkie, escorted to the lab, drawn individually, then brought back with the same process to get the injection in a private exam room. This has been working well.

Any differences based on ethnicity?

  • Data suggests that black populations may be disproportionately affected by COVID-19.

What are you recommending for patients who are healthcare providers and are on immunosuppressants?

  • We give them a letter explaining that they are immunosuppressed and stating that while they are still able to work and provide care, it would be best if they were NOT assigned to any location where PPE is required.

Can you explain the difference between immunosuppressant and immunomodulator?

  • Immunomodulators modify the immune response in some way - this MAY include immunosuppression but doesn’t have to. So all immunosuppressants are immunomodulators, but not all immunomodulators are immunosuppressants. The most common example of an immunomodulator that is NOT an immunosuppressant is HCQ, which affects intercellular communication but does not lead to an increased risk of infections for the patient who is taking it.

Have you seen a Livedo type rash that is some time transient as of yet with patients?

  • Not personally, but a report out of northern Italy states that 20% of patients in one cohort had skin manifestations from infection with SARS-COV-2. The rash was not necessarily livedo, however. They varied from basic erythema to uritcaria to vesicular.  J Eur Acad Dermatol Venereol. 2020 Mar 26. doi: 10.1111/jdv.16387

Which phase of the virus are we experiencing?

  • Still trying for containment but clearly, we are into the mitigation stage in many areas.

How far is NYS from an effective therapy?

  • Trials are underway. It is too soon to tell.

Any tips on telehealth exams and documentation pearls?

  • First, explain what you are doing, that insurance has allowed the Telemed visits during COVID-19 and it is not a HIPPA violation. Co-pays will be charged. I use this as my first documented line in my history and that the patient has agreed to the visit.

  • Use the next 2 minutes to listen and discuss the patient's complaints.

  • Next do the physical exam, ask them to make a fist/claw/pinch/send pics of rashes.

  • Discuss meds/refills/monitoring/referrals.

  • More often than not, a large part of the visit will be counselling/concerns with COVID. This is an ideal time to ask who is with them and detect any social distancing/safety concerns. With this watch your time, check with your states/insurances reimbursement based on time and document this time.

  • Most importantly remember to not cancel any follow-up or if needed make the follow-up visit or have your MA call them back and get them on your follow-up schedule.

Are false negatives tests possible in immunosuppressed populations?

  • False negatives are possible, but unclear if this is increased in the immunocompromised populations - we just don’t have the data yet.

We have not seen anything that cautions about pregnancy, whether or not immunosuppressed, and continuing to work in a clinic or hospital following precautions. Are there any comments on that?

  • According to ACOG “based on limited data regarding COVID-19 and pregnancy, ACOG currently does not propose creating additional restrictions on pregnant health care personnel because of COVID-19 alone. Pregnant women do not appear to be at higher risk of severe disease related to COVID-19.” They do go on to say, however ,that “facilities may want to consider limiting exposure of pregnant health care personnel to patients with confirmed or suspected COVID-19 infection, especially during higher-risk procedures.”

Have you seen patients on rheumatologic biologics and DMARDs in ICUs from COVID-19? If so, do they do worse or better than others?

  • Personally, I haven’t seen this however, reports are starting to come in from the COVID-19 Global Rheumatology Alliance registry. We recommend you check their website often as information is changing daily as more and more reports come in.

How are other providers dealing with the demand for Plaquenil and assuring that their patients get their meds?

  • In NY, there is an Executive Order to now only dispense HCQ with a written diagnosis on the RX. 

  • The diagnosis can only be for a FDA-approved indication or an indication supported by one or more citations written in the pharmacompendia. This would cover RA, Lupus, and Sjogrens for Hydroxychloroquine. Chloroquine would cover Ulcerative Colitis and Sarcoidosis. (Some states are requiring new RXs for all HCQ orders, so providers are dealing with having to rewrite all new orders.)

  • As part of a state approved clinical trial related to COVID-19, for a patient who tested positive, with documentation of test results as part of the RX

  • Inpatient or acute settings

  • Residents in a subacute part of skilled nursing facility

  • No other experimental or prophylactic use shall be permitted

How are others handling shortage of hydroxychloroquine (i.e. reducing dose, changing to other meds, etc.)? Please, comment on using prednisone as the information we have is stating prednisone is worsening COVID-19 patients.

  • We have told patients who are on HCQ 400 mg per day to decrease to 300mg per day, and patients who are on 300 per day to decrease to 200 per day. This is not based on any official recommendation, it’s just practical advice based on common sense. Our thinking is that if they are unable to get their refills at least they can stretch out what they have on hand.

  • Patients who are confirmed (or highly suspect) to have COVID-19 should probably be weaned rapidly off prednisone if they are already on it. This would best be handled in conjunction with an ID colleague.

  • Rheum patients who are on 7.5 mg prednisone per day or less who do NOT have any COVID symptoms can remain on it if it is necessary.

How has COVID-19 been impacting rheumatology patients/patients with autoimmune diseases, and how have you been counseling your patients during this time?

I have copied and pasted the EULAR recommendations too many times to count! Please see below:

EULAR Guidance for patients COVID-19 outbreak as of March 17, 2020

  • During the current COVID-19 coronavirus outbreak there are likely to be questions and special anxieties for people with Rheumatic Musculoskeletal Diseases (RMDs) who are taking immune suppressive medicines like biologic drugs, JAK inhibitors, steroids and conventional disease modifying anti-rheumatic drugs (DMARDs) e.g. methotrexate.

  • Immune suppressive drugs are useful to prevent a worsening of your RMD. When you stop these drugs, you may experience a flare-up of the RMD. With regard to the effect of these drugs on a possible Coronavirus infection, we do not yet know enough to offer formal advice. We therefore advise you not to stop or reduce your medication at this time, unless your provider tells you otherwise for a specific reason.

  • If you have a routine rheumatology appointment booked it would be wise to ask your provider if this is essential, or can be safely delayed, or if it can be performed as a virtual visit or by telephone.

  • Meantime, if not already done, it would be wise to undertake or complete vaccination protection according to national guidelines, at present with priority against influenza, but also against whooping cough and pneumococcus.

  • Simple measures are likely to help to preserve your health and that of your family and friends:

  • Wash your hands very regularly for at least 20 seconds using soap and water. Dry hands thoroughly afterwards.

  • Try to avoid touching your face.

  • Coughing or sneezing should be into an elbow or tissue paper and the latter should be discarded safely.

  • Use disposable tissues.

  • Wear a mask when you are ill; if there are no symptoms it is not necessary to wear a mask. The mask cannot completely prevent virus transmission, but it is a good reminder of not touching your face and serves to warn others that you may not be well.

  • Practice sensible social distancing especially from people who appear to be ill, e.g. coughing or sneezing.

  • We should greet each other without shaking hands and avoid hugs.

  • Try to avoid busy public transport and large groups of people.

  • Do not embark on unnecessary travel at this time.

How is coverage for telemedicine coming along in your area?

  • Our health care system waived all patient fees for virtual/telephone visits during the COVID crisis. So no data on this yet.

  • We are now seeing reimbursement come in as of 4/9/2020.

Do you have any best practices on how to manage our patients and get labs done safely during this time? How long can we safely extend our safety monitoring labs?

  • If our patients have been on the same medication for >2 years and have not had any prior lab abnormalities, we are telling them to wait to get labs until late summer.

  • If labs are essential for monitoring medications, I will direct patients to the lab during an off hours time and ask them to wear a mask. Often our labs have not been as crowded, and we use social distance guidelines in the waiting room and in the lab suite.

How will lupus patients and RA patients be treated if they aren’t able to get their prescription filled for hydroxychloroquine?

  • Any of the approved DMARDs or biologics. We have not had to switch anyone yet, but our plan is to use low dose prednisone and/or belimumab for moderate to severe SLE, and any of the DMARDs for RA.

Are patients with autoimmune disorders such as arthritis and lupus at higher risk for acquiring COVID-19? (Already knowing people with heart problems, asthma, COPD, cancer, and diabetes are considered high risk patients.) Just curious if autoimmune patients are considered as high of a risk.

  • Interestingly so far, the data is not showing that immunosuppressed patients are at higher risk. Also, no safety signals for autoimmunity so far. Stay tuned.

Are our lupus patients protected because they take hydroxychloroquine?

  • This is too soon to tell. Several patients on HCQ have become infected with COVID-19 so clearly if there is any benefit it’s not 100%.

Are there any risk factors that can help predict which patients will experience the cytokine storm?

  • No. But of the patients who do experience ARDS, those who are obese, have diabetes, or underlying renal or cardiac disease are less likely to survive it.

Pay Cuts

  • Have we seen any? Not in our large academic medical center.

  • There are reports of a furloughed rheumatology PA from a private practice, and up to 30% salary reductions for others in multispecialty groups. Reports of deployment to other departments in large groups or hospitals.

Should rheumatologists wear masks at encounters with patients?

  • Yes, if available, a disposable paper mask. If not, at least a cloth mask. An N95 is NOT recommended and should be reserved for caregivers treating patients known to be COVID-19+.

Should the new normal include a shift from Clinical Medicine to Public Health? (i.e. treat obesity with public education for all instead of pills and surgery for the most afflicted)

  • Yes.

Take on plaquenil primary prophylaxis?

  • No evidence that it works. Could lead to serious side effects and would lead to a shortage of the medication for those who need it. Not recommended at this time.

The benefit of IL6 inhibitors, dose and route of administration in critically ill COVID-19 intubated patients.

  • Under investigation. See above.

What key signs/symptoms make you decide to take someone to the hospital? 

  • Shortness of breath at rest. High fever and cough.

What are you using for patients on hydroxychloroquine? The other dmards seem to be a giant step or need a tpmt.

  • Any of the approved DMARDs or biologics. We have not had to switch anyone yet but our plan is to use low dose prednisone and/or belimumab for moderate to severe SLE, and any of the DMARDs for RA.

What rheumatology patients are more at risk for COVID-19 based on their diagnoses and the medicines they take?

  • There is no data so far that immunosuppressed patients are at higher risk. The first data set released by the CDC showed that of 7000+ COVID patients, less than 4% were immunosuppressed at the time of diagnosis.

Why is COVID-19 so avid for the lung tissue?

  • Coronavirus has spiky surface proteins that attach to receptors on healthy cells, especially in the lungs. These viral proteins get into healthy cells to replicate via ACE2 receptors. Lung cells are covered with these surface proteins (ACE2 receptors) more than the rest of the respiratory tract, so this virus can enter the cell, replicate and penetrate deeper than other viruses. When lung tissue is damaged, the innate healing response of the body releases inflammatory proteins called cytokines. Too much inflammation can make things worse. These ACE2 molecules normally have anti-inflammatory properties to stop the immune cells from damaging the body’s cells. When the coronavirus attaches onto the ACE2 protein, the anti-inflammatory properties are interrupted.

  • This can lead to cytokine storm.

How are outpatient rheumatology clinics dealing with the Plaquenil shortage? 

  • This does not cover our MCTD patients. Our hospital, Northwell Health, Great Neck, NY, has an in-house retail pharmacy that will dispense for a diagnosis where HCQ is standard of care and there is compelling literature to support off-label use. We have been sending our patients there if their local pharmacies still do not have stock.

What effects are you seeing in your patients receiving or needing hydroxychloroquine now during this pandemic? What is the plan for patients needing hydroxychloroquine should this drug become shorted?

  • To conserve supply, they are limiting RXs to a 14-day supply for new starts (COVID or Rheum indications) and 30 days for continuation of therapy in patients that have previously been on it.

  • Some practices are running HCQ reports and have started to proactively lower patients’ HCQ dose by about 25-50% as long as they are stable.

How will lupus patients and RA patients be treated if they aren’t able to get their prescription filled for hydroxychloroquine?

  • Many patients are requesting refills even though they have not been on HCQ for over a year. We are assessing and renewing where appropriate. Insurances are now also requiring Prior Authorizations to confirm diagnosis. As far as treatment- Any of the approved DMARDs or biologics. We have not had to switch anyone yet, but our plan is to use low dose prednisone and/or any of the DMARDs for RA.

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