Open letter regarding COVID-19

Open letter regarding COVID-19 from the CDCN Scientific Advisory Board to the Castleman disease community

This letter is not official policy of the CDCN or the members of its Scientific Advisory Board, but it is the best advice we have to give at this time. We have been receiving countless telephone calls and emails from worried parents and other loved ones.

March 13, 2020

Are all Castleman disease patients considered to be immunosuppressed and highly susceptible to COVID19?

COVID19 has recently been classified as a global pandemic. There is a wide range of severity of illness and deadliness based on a number of risk factors. People who are most at risk are the elderly and those with chronic illnesses, especially lung disease. Patients who are immunosuppressed are thought to be at increased risk. The current recommendations are for these people to avoid crowds.

Individuals with only one of the four subtypes of Castleman disease are considered to be immunosuppressed at all times: HHV-8-associated multicentric Castleman disease patients are considered to be immunosuppressed.

Individuals with any of the other three subtypes of Castleman disease (unicentric Castleman disease, POEMS-associated multicentric Castleman disease, and idiopathic multicentric Castleman disease) are not considered to be immunosuppressed at all times. They are only considered to be immunosuppressed if they have recently received or are currently being treated with an immunosuppressive treatment.

Immunosuppressive treatments that individuals with Castleman disease often receive include cyclophosphamide, etoposide, adriamycin, rituximab, siltuximab, tocilizumab, sirolimus, and cyclosporine. We don’t know if individuals treated with any of the above treatments are actually at increased risk or not. Obviously, we hope not.

Even if it’s not clear if Castleman disease patients are highly susceptible to COVID19, what should I do to lower my risk?

COVID19 spreads from person to person by coughing and sneezing on surfaces, where the next person touches their face. Please follow CDC ( and WHO recommendations for how to prevent spread:

  • Hand-washing frequently and avoid touching your face
  • Social distancing: Avoid large gatherings and take precautions to limit exposure to sick people is important
  • Stay home when you are sick
  • Cough/sneeze into your elbow

It’s important that you stay as healthy as possible before getting infected. We would not want you to get the regular flu, be debilitated by that and then get the coronavirus soon after. The result could be much worse than just getting coronavirus alone. If you have not been immunized against influenza you should get it as soon as possible.

Should I stop my Castleman disease treatment to help prevent my becoming ill with COVID19?

There is no data currently available to support discontinuing treatment to prevent coronavirus infection. The treatments often given to patients with Castleman disease may or may not increase or potentially decrease your risk of infection and your ability to fend off the infection. Please contact your physician if you have any questions.

Should I begin taking supplements and vitamins? Are there other alternatives?

There is no data to suggest that any vitamins and supplements improve outcomes in patients with COVID19. There are a few proven lifestyle choices that you can take to ensure you giver yourself the best chance to do its job against any respiratory illness:

  • Lower your stress
  • Improve your sleep habits
  • Avoid excessive alcohol consumption
  • Eat a balanced diet, exercise, and skip unproven supplements (like elderberry)
  • Vitamin D (more research is needed)

Find more helpful information here:

What symptoms should I look out for?

Fever, dry cough (no mucous), difficulty breathing

If I think I have COVID19, where can I get information about how to get tested?

Go to your state health department website. The following website from the University of Washington provides information about a lab that can perform testing:

Should I seek medical care?

If you have Castleman disease, then it is important that you inform your physician and seek medical care. If you are seeing a physician that is not familiar with your case, inform your physician of your Castleman disease and any recent therapy that you may have received.

Should I stop my Castleman disease treatment if I become ill with COVID19?

There is no data on whether you should stop or continue your Castleman disease treatment after you become infected with COVID19. We recommend following the guidance of your local care team and/or Castleman disease physician.

I heard that tocilizumab is being used to treat COVID19 patients that do not have Castleman disease. Does that mean that my risk of developing COVID19 is lower if I’m currently treated with tocilizumab or siltuximab?

COVID19 causes death by igniting a ‘cytokine storm’ that requires ICU care. There is no data about whether treatment with tocilizumab or siltuximab in Castleman disease patients could prevent getting ill, but it is unlikely. The tocilizumab is being given to control the ‘cytokine storm’ that the virus causes. The tocilizumab is not treating the viral infection directly.

How long will it take to make a vaccine available to the public?

Likely more than a year.

Will tocilizumab and siltuximab still be in stock?

Both companies are aware of the increase demand and will hopefully be able to supply enough of those medications but it isn’t possible to know what will happen.

Should I stay home from work?

This is a personal decision as to whether you feel it is safe to go to work, but we do recommend staying away from other ill people and potentially sick contacts.

How will I be able to determine what is normal Castleman disease fatigue and what is COVID-19 fatigue?

You should not try to figure out what is causing your fatigue, but if you have the symptoms commonly associated with COVID19 then you should seek medical attention and contact your physician.

What else can I do?

Be sure you have at least a one month supply of all medications which are critical to your health. Don’t wait until the last minute to get a refill. If a drug is no longer available, talk to your physician about potential alternate medications which are available to get you through a temporary shortage.

We recommend trying not to panic or be afraid. Having an overtime mindset, focusing on what we can control, and turning our hopes and fears into concrete action is so important.

If it is likely that most people are eventually going to get this virus sooner or later, why are organizations, large companies, schools and universities closing in person classes or large gatherings?

These organizations are trying to delay people getting infected, so that there are enough ICU beds, ventilators, and intensive care units to accommodate the rise in demand that will be required to appropriately manage the small proportion of those patients who contract the virus who develop serious complications and improve their outcomes. By slowing down the rate of spread so that it takes much longer for everybody to be exposed, it will reduce the number of people needing critical care at any one time and hopefully our system will be able to handle it.

These are not the final recommendations, watching the news, going to reliable websites such as the Centers for Disease Control (CDC) are important as this disease is developing rapidly.

Please contact your physician with any questions you may have.

Update: April 13, 2020

CDCN Scientific Advisory Board Expert Opinion on the management of idiopathic multicentric Castleman Disease during the COVID-19 Pandemic

It is now well-established that anti-IL6 agents such as siltuximab and tocilizumab are effective therapies for some patients with idiopathic multicentric Castleman Disease.  These agents do not only control symptoms short term, but continued administration to responders is safe and provides durable disease control.

Anti-IL6 drugs such as siltuximab and tocilizumab are also being used to treat the cytokine storm brought on by COVID-19 in some severely ill patients. Conclusive data regarding their effectiveness for the treatment of COVID-19 is pending. Though there is no information currently available indicating that this will occur, the CDCN recognizes that there could potentially be a shortage of supply of siltuximab and tocilizumab during the COVID-19 pandemic.  The CDCN expresses concern regarding the availability of these essential drugs for Castleman Disease patients.  The CDCN understands that the manufacturers of both siltuximab and tocilizumab are committed to supply drug for Castleman Disease patients. However, the CDCN wants to provide pro-active guidance on steps physicians and patients can take should unforeseen shortages arise due to logistical issues e.g. lock down in various countries, shipping issues, etc.

The CDCN Scientific Advisory Board Expert Opinion regarding different scenarios relating to drug availability and your disease status follow.

  1. If you are on siltuximab or tocilizumab AND there are no drug shortages AND you are in remission or have excellent control of your disease:
    • The CDCD Scientific Advisory Board Expert Opinion is that siltuximab or tocilizumab maintenance therapy should be continued and not be stopped. The impact of COVID19 infection on Castleman Disease patients treated with anti-IL6 agents is not certain.  However, it is important to point out that anti-IL6 drugs such as siltuximab or tocilizumab are being used both in clinical trials and off-label to treat severe COVID-19 infections.
  1. If you are on siltuximab or tocilizumab AND there is a shortage AND you are in remission or have excellent disease control:
    • if you CAN get siltuximab or tocilizumab (though supply is limited), consider spacing out dosing to every 6 weeks or consider holding therapy with close monitoring
    • if you can NOT get siltuximab or tocilizumab, consider switching to another anti-IL6 therapy (sarilumab) or an alternative treatment [if high-risk of a severe relapse] or consider pausing therapy with close monitoring [if not at high-risk of a severe relapse]
    • In terms of alternative therapies and based on present data from other coronaviruses, steroid therapy as a replacement for anti-IL6 therapy is not preferred at this time. Similarly, rituximab may also not be preferred. Rituximab may limit the ability to mount a sufficient immune response if infected by COVID-19 and may also be detrimental when a vaccine is eventually produced.  However, for every patient, a risk benefit analysis needs to be made.  At times, steroid, rituximab or other therapies may still be required.  Please discuss the options with your local doctor or an expert from the CDCN
  1. If you had to stop siltuximab or tocilizumab due to a shortage AND you are now showing signs of relapse (BUT can not get your original medication):
    • Consider beginning the other anti-IL6 therapy or another anti-IL6 therapy (sarilumab)
    • If no anti-IL6 therapy is available then alternative options such as rituximab, steroids, thalidomide, sirolimus etc. should be considered.
    • Review the CDCN’s iMCD treatment guidelines AND reach out to the CDCN ( so that we can connect your physician with members of our Scientific Advisory Board for an individualized consultation.

Prevention of COVID -19 infection is always the best strategy. We recommend our patients stay at home if feasible and only go out for essentials such as grocery shopping, doctor appointments, and the pharmacy only when absolutely necessary. As such, you should consider weighing the risks and benefits of coming to medical facilities currently dealing with COVID19 patients with your doctor and consider looking into options for home infusion, if possible. Avoid ill persons, and maintain a distance of at least 6 feet between others and practice thorough and often hand washing and hygiene. A list of approved hand sanitizers can be found on the Centers for Disease Control and Prevention’s website. Follow all guidelines of the Center for Disease Control ( and those of your individual state.


Castleman Disease Collaborative Network Scientific Advisory Board

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