COVID-19 Statement

FDA Safety Communication: Pulse Oximeter Accuracy and Limitations

February 22, 2021

Please see the recent U.S. Food and Drug Administration (FDA) safety communication to inform patients and health care providers that pulse oximeters have limitations and a risk of inaccuracy under certain circumstances.

 

COVID-19 VACCINE Q& A

February 22, 2021

Please see the below most frequently asked questions regarding COVID-19 Vaccines and answers from one of our mast cell disease experts.

For people with mast cell issues who are highly reactive to so many substances, what is the thinking on the mRNA vaccines?

So far, our physicians have been reporting that patients with mast cell disease are great candidates for the COVID19 vaccines that are mRNA vaccines, and have been tolerating them very well. 

Take certain precautions before and after receiving the vaccine?

Our recommendations are to avoid the vaccine only if you are allergic to one of the ingredients in it, such as polyethylene glycol or polysorbate, or if your other health conditions have caused your physician to advise you not to take the vaccine. We advise you to get the vaccine in a healthcare facility capable of treating any possible reaction, including anaphylaxis, premedicating with Zyrtec 10 mg one hour before OR whatever your standard H1 histamine blocker is, and to remain at the vaccine site for observation for a full 30 minutes after receiving the vaccine.

Is one type of vaccine better for us than the other? Johnson & Johnson vs Pfizer & Moderna

Any vaccine is better than not getting a vaccine. The J an J vaccine may have an overall lower rate of preventing contracting the COVID-19 virus, but it has a 100% rate of preventing death from the virus. All the available and approved vaccines have a protective effect of over 90 %.

Might a more traditional vaccine like Johnson and Johnson be better for people with mast cell issues? 
Dr. Castells does not recommend one vaccine over another at this time for mast cell patients, with the exception if you are allergic to an ingredient in one of them.

Does the Johnson vaccine contain metals like aluminum?

Dr. castells said she is not aware that the vaccine contains metals like aluminum. Please call the manufacturer to ask that question.

Is it possible the Moderna or the Johnson and Johnson vaccine might trigger mastocytosis and make it worse permanently? Your Title Goes Here

While any stressor can cause a flare in symptoms of mast cell activation, getting vaccines will not worsen a clonal disease permanently. There are currently several hundred patients with mastocytosis around the world and no exacerbation of mast cell symptoms have been observed.

What would you anticipate the difference in reaction and efficacy to be between the two types of vaccines?

The vaccine profiles are very similar in terms of rates of reaction and efficacy. The second dose of the Moderna vaccine may result in a headache and body aches for 24-48 hours along with a sore arm, but this is also an indication of an active immune response.

How many of your patients have had the vaccines?

Regarding our BWH Mastocytosis Center around 30 patients have been vaccinated with Mastocytosis, HAT or MCAS none of whom had severe side effects

What if you have a Shellfish allergy?

Patients with shellfish allergies so far have done well with having the COVID19 vaccines. 

Extremely allergic reaction to Sculptra filler injections? (poly-L-lactic acid, also known as PLLA) Would these be a reason not to get the moderna vaccines?

There is evidence for severe reactions to PPLA in mastocytosis patients. Having a reaction to PLLA is not a contraindication for the Pfizer or Moderna vaccine.

Is there any evidence that people with mastocytosis react differently to the covid virus – More immune? Less immune? Worse results? Better results?

Having mastocytosis means that you have an increased number of mast cells, and one of the functions of mast cells is to participate in an immune response. Having more mast cells can therefore be protective when the body faces a challenge that an infection such as the coronavirus which causes COVID19.

Does the blood type make any difference?

“Blood type is not associated with a severe worsening of symptoms in people who have tested positive for COVID-19”, report Harvard Medical School researchers based at Massachusetts General Hospital.

Their findings, published in the Annals of Hematology, dispel previous reports that suggested a correlation between certain blood types and COVID-19.

The study did find, however, that symptomatic individuals with blood types B and AB who were Rh positive were more likely to test positive for COVID-19, while those with blood type O were less likely to test positive.

“We showed through a multi-institutional study that there is no reason to believe being a certain ABO blood type will lead to increased disease severity, which we defined as requiring intubation or leading to death,” said senior study author Anahita Dua, HMS assistant professor of surgery at Mass General.

“This evidence should help put to rest previous reports of a possible association between blood type A and a higher risk for COVID-19 infection and mortality,” Dua said.” Text taken from

MGH NEWS AND PUBLIC AFFAIRS July 17, 2020

For those of us with Alpha Tryptasemia, Systemic Mastocytosis, and severe cardiac involvement from drug induced anaphylaxis...should we set in place further precaution before COVID vaccine like IV placement and perhaps telemetry?

This should be discussed with your physicians, including your cardiologist. There is no evidence that patients with mastocytosis , HAT or MCAS have increased reactions to the mRNA vaccines and several hundreds have been vaccinated around the world. At present time there is no indication for hospital setting, IV or telemetry.

Would timing of Xolair injection prior to COVID vaccine be beneficial, given the 24 day half life of Xolair?

In patient on Xolair, 7- 10 days prior to vac.

Is there any data showing Mastocytosis patients getting COVID but not showing antibodies afterwards?

Not having an antibody response to an infection or antigen is usually associated with other types of disorders, like an immunodeficiency, rather than mastocytosis. Having more mast cells or more active mast cell does not impact T cells or b cells which are the cells providing the antibodies against Covid19 and the protection.

The presentation of Covid19 infection in non mastocytosis and mastocytosis patients is heterogenous and can be limited to one or more organs , from diarrhea alone to systemic involvement with fatigue, chills and respiratory symptoms with or without fever.

I have evolving allergies, one day I can eat something and the next I can't because I get a reaction, how is my body going to act if I take the vaccine?

No one knows your body better than you. You have already noted that you have variable reactions. You will have to take your medications and manage any flaring in symptoms as they occur. Call your physician if any symptoms arise which are extreme, or which you cannot manage.

I have inflammatory diseases, like Polyarthritis, asthma, MCAD (Mast cell activation disease), Celiac disease. With all these inflammatory processes, is it safe to take vaccine at my health center?

We recommend that you take your H1 Blocker one hour before, carry your Epi-pen, and get your vaccines in a health care facility capable of managing any reaction or anaphylaxis should it occur. We also recommend that you stay at the vaccine site for 30 minutes after administration.

For people with MCAS: Should we try to get the covid vaccine at our doctor’s office when it’s our turn or is it ok to go to one of the state run sites (like Gilette Stadium)?

We recommend that you take your H1 Blocker one hour before, carry your Epi-pen, and get your vaccines in a health care facility capable of managing any reaction or anaphylaxis should it occur. We also recommend that you stay at the vaccine site for 30 minutes after administration.

What should we be doing as patients who are undiagnosed and do not have great doctors? Many of us are in situations where can get some appropriate meds prescribed but not much help beyond that.

TMS is launching some great initiatives to help to educate more physicians to help to ease this situation. In the meantime, as online in social forums for the names of physicians in your area who patients recommend as being helpful in treating mast cell disease.

Talking to your specialist for advice on the vaccine is great, but only if you have a specialist or doctor you can trust and who understands your medical conditions. Some of us don’t have individualized plans for pre medication, or instructions or a plan for what to do with a reaction, and that’s concerning.

On the TMS website home page is our Emergency Protocol. In it you will find a page that you can print and take or send to your physician to personalize and sign for premedication instructions and emergency treatment instructions:

https://tmsforacure.org/wp-content/uploads/2020-TMS-ER-Protocol-2.pdf

COVID-19 VACCINE UPDATE

February 17, 2021

Please see the below template letter TMS sent to our MA Governor. It can be amended to be appropriate for your state, and send it to your governor and representatives to urge them to make vaccines available in health care facility for our community. 

 TMS Advocacy Letter for COVID19 Vaccine in Healthcare Facilities

February 3, 2021

In the published correspondence from Dr. Mariana Castells and colleagues to the Journal of Allergy and Clinical Immunology, the successful vaccination of 2 individuals with mast cell diseases with mRNA vaccines to COVID is reviewed. The two healthcare workers have systemic and cutaneous mastocytosis, and symptoms of mast cell activation (including anaphylaxis).

Rama TA, Moreira A, Castells M. mRNA COVID-19 vaccine is well tolerated in patients with cutaneous and systemic mastocytosis with mast cell activation symptoms and anaphylaxis. 
Published: January 19, 2021 DOI: https://doi.org/10.1016/j.jaci.2021.01.004

December 22, 2020

Our physicians recommend that patients with mast cell disease premedicate with an H1 blocker such as cetirizine (Zyrtec) 10 mg for adults, one hour prior to getting the vaccine. (Please consult with your pediatrician or allergist for pediatric dosing). Some of the physicians also recommend Benadryl (diphenhydramine) as an alternative if you cannot tolerate Zyrtec with the caution that it can cause drowsiness and make some patients, especially the elderly, prone to falls and fractures. Please discuss with your mast cell disease specialist which H1 blocker might be right for you to use, and to obtain the correct dosing to be given one hour prior to receiving the COVID-19 vaccine. 
 
All patients should carry an UNEXPIRED Epi-Pen or other form of injectable epinephrine with them to the vaccine administration site. Patients with a mast cell disease should receive the vaccine in a healthcare setting where anaphylaxis can be treated, should it occur, and should remain there for 30 minutes after the vaccine is administered before leaving for home.
 
Since the Moderna vaccine is an mRNA vaccine like the Pfizer vaccine, recommendations for use are the same. However, these recommendations are based on currently available information and may be changed/updated as more clinical data becomes available.
 
Thank you.
Warmly,
The TMS/AIM team and other physician advisors from our TMS Medical Advisory Board

 

 

COVID-19 PFIZER VACCINE

December 15, 2020

Our mast cell disease specialists have recommended following the ACAAI advice regarding the Pfizer COVID19 Vaccine. If you have a history of Guillain-Barre syndrome, please consult with your physician about receiving this vaccine.

American College of Allergy, Asthma, and Immunology (ACAAI) Guidance on Risk of Allergic Reactions to the Pfizer-BioNTech COVID-19 Vaccine

ARLINGTON HEIGHTS (Dec. 14, 2020) – With the emergency use authorization of the Pfizer-BioNTech COVID-19 vaccine by the FDA on December 11, 2020, and distribution beginning today, the American College of Allergy, Asthma and Immunology COVID-19 Vaccine Task Force recommends the following guidance related to risk of an allergic reaction on vaccination for those who receive the vaccine. These recommendations are based on best knowledge to date but could change at any time, pending new information and further guidance from the FDA or CDC.

  1. Allergic reactions to vaccines, in general, are rare with the incidence of anaphylaxis estimated at 1.31 in 1 million doses given.
  2. Individuals with common allergies to medications, foods, inhalants, insects, and latex are no more likely than the general public to have an allergic reaction to the Pfizer-BioNTech COVID-19 vaccine. Those patients should be informed of the benefits of the vaccine versus its risks.
  3. The Pfizer-BioNTech COVID-19 vaccine should be administered in a health care setting where anaphylaxis can be treated. All individuals must be observed for at least 20-30 minutes after injection to monitor for any adverse reaction. All anaphylactic reactions should be managed immediately, with epinephrine as the first line treatment. 
  4. The Pfizer-BioNTech COVID-19 vaccine should not be administered to individuals with a known history of a severe allergic reaction to polyethylene glycol as it is a component of this vaccine that is known to cause anaphylaxis. 
  5. Data related to risk in individuals with a history of allergic reactions to previous vaccinations and/or mast cell activation syndrome/idiopathic anaphylaxis is very limited and evolving. A decision to receive the Pfizer-BioNTech COVID-19 vaccine should be undertaken by you with your physician or other provider administering the vaccine using their professional judgment balancing the benefits and risks associated with taking the vaccine. 
  6. The Pfizer-BioNTech COVID-19 vaccine is not a live vaccine and it can be administered to immunocompromised patients. Physicians and other providers should inform such immunocompromised patients of the possibility of a diminished immune response to the vaccine. We do not know at this time if people with a weakened immune system will respond to the vaccine and be protected from COVID-19. 
  7. If you have questions related to the risk of an allergic reaction to the Pfizer-BioNTech COVID-19 vaccine, contact your local board-certified allergist/immunologist.

December 11, 2020

Just released: FDA Emergency Use Authorization Vaccines explained. TMS continues to collaborate with our mast cell disease specialists and will keep you informed as we learn more about FDA regulations.


December 10, 2020

On behalf of TMS, our board members Valerie Slee, Board Chair and Jan Hempstead, Patient Care Coordination Chair have contacted our Mast Cell Disease specialists regarding the recent release of the Pfizer COVID-19 vaccine’s dissemination dates throughout multiple states. We understand your concerns whether or not to take this version of COVID-19 vaccine if you have a mast cell disease. In lieu of the fact that two individuals had an anaphylaxis reaction to the Pfizer COVID-19 vaccine, there will be additional options for patients to consider as the Moderna vaccine will be released shortly, as well as two other vaccines yet to be released. In the meantime, please consult with your physician and stay tuned for updates coming soon.

Today, the FDA met regarding use of the Pfizer COVID19 vaccine in patients with severe food, medication and/or vaccine allergies. TMS will continue to inform our community as we learn more about the specifics of the Pfizer COVID19 vaccine, and consult with our mast cell disease specialists. We expect a statement from the FDA in the next 24-48 hours. Thank you for your patience. 

December 9, 2020

TMS is in touch with physicians and patient groups throughout the world, and we will keep you informed as we learn more of the evolving Pfizer COVID19 vaccine. It’s vital that we take the pandemic and vaccine seriously in our community at all times, as the goal of TMS is always to protect and advocate for our patients and families. When it’s time to take the vaccine in the US we will consult with our Medical Advisory Board and share recommendations to ensure safety.

RISK AND MANAGEMENT OF PATIENTS WITH MASTOCYTOSIS AND MAST CELL ACTIVATION SYNDROME (MCAS) IN THE SARS-COV-2 (COVID-19) PANDEMIC: EXPERT OPINIONS

September 28, 2020

In a recent article (June 2020) released by an international group of physicians who treat mast cell diseases, recommendations regarding managing a mast cell disease in the context of COVID-19 are discussed. The potential of mast cell participation in COVID-19 infection is reviewed, including cytokine storms, but the lack of definitive evidence regarding whether or how mast cells participate is emphasized. For most patients, the risk of acquisition or transmission of the virus is the same as it is for most people without a mast cell disease. Comorbid conditions (e.g. obesity, hypertension, diabetes mellitus, arterial hypertension, cardiovascular diseases and chronic respiratory tract diseases, cancer requiring chemotherapy, and immunological disorders) are the major determinants of outcome based on the current state of knowledge. The discussion of immune function is important as most patients in our community have normal immune function, although those on immunosuppressive agents or chemotherapy or with known immune deficiencies may need additional precautions that are outlined. Modifications to medication regimens for those with mastocytosis are presented in table form. Finally, specific recommendations for how to treat patients with mast cell diseases who test positive for COVID-19 are included. 

Review of this article with your physician is encouraged in order to make sure that your medications are continued as recommended and to ensure that if you do contract COVID-19, your treatment is made based on current guidelines. These guidelines are based on expert opinion and are not data driven; as data gathered from patients around the world with mast cell diseases and COVID-19 are published, these recommendation will be updated, and The Mast Cell Disease Society, Inc. (TMS) will publicize those findings to the mast cell disease community.

Valent P, Akin C, Bonadonna P, et al. Risk and management of patients with mastocytosis and MCAS in the SARS-CoV-2 (COVID-19) pandemic: Expert opinions. J Allergy Clin Immunol. 2020 Aug;146(2):300-306. https://www.jacionline.org/article/S0091-6749(20)30839-3/pdf

TMS Research, Advocacy and Education Committees
Celeste Finnerty, PhD; Barbara Ruby, BS, MA; Nicole Fox, MSN, RN, OCN; Valerie M. Slee, RN, BSN; Susan Jennings, PhD.

Many thanks to Mariana Castells, MD, PhD; Matthew J. Hamilton, MD, and Matthew Giannetti, MD, for reviewing this text.

COVID-19 STATEMENT FROM THE MASTOCYTOSIS SOCIETY, INC. (TMS) AND PHYSICIANS FROM TMS MEDICIAL ADVISORY BOARD

March 14, 2020

There have been many questions from patients affected by mast cell disease about the new coronavirus and if there are any precautions or changes in their medical management that should be undertaken. The Mastocytosis Society, Inc. (TMS) has contacted members of our Medical Advisory Board for assistance in addressing these questions. Our physicians advise that it is still unknown why some of the coronavirus patients have no or only mild symptoms whereas others are severely ill. Because of this, it is very important that everyone follow the guidance established by the NIH, the CDC and the federal task force, while taking into account their own personal reactivities (e.g., alcohol-based products may not be tolerated by some mast cell disease patients)

https://www.cdc.gov/coronavirus/2019-nCoV/index.html

Elderly patients and patients with cardiac, lung or renal disease, diabetes, and/or known immunodeficiency are at increased risk for severe symptoms as described by the World Health Organization (WHO). What we do not know is whether or not patients of any age, with any form of mast cell disease, including mastocytosis, are at increased risk. Due to this unknown risk, we are advising patients affected by mast cell disease to consider taking extra precautions as for potentially vulnerable populations, as described in the link below:

https://www.cdc.gov/coronavirus/2019-ncov/specific-groups/high-risk-complications.html

If you have any high-risk factors or are immunocompromised due to disease or medications used to treat disease, please contact your physician for further instructions.

While there is not yet complete data, it appears acute lung injury caused by SARS-CoV (note: the virus is SARS-CoV2; the disease is termed COVID-19) infection results from aggressive inflammation initiated by viral replication. This replication affects multiple cell types (including airway and alveolar epithelial cells, vascular endothelial cells, lymphocytes and macrophages) leading to cell death, and associated increased production of multiple pro-inflammatory cytokines and chemokines (which has been referred to as “cytokine storm”). It is likely mast cells are also involved, among the many other cell types affected, although mast cells can produce anti-inflammatory molecules which might have some protective effects. We are also just learning how to treat those infected with pharmacologic approaches and vaccine development is underway. If someone with mast cell disease gets infected and requires hospitalization, their doctor should be aware of their current mast cell disease medications, aware of the potential for cytokine storm, and be prepared to pivot to medicines as needed for this, mast cell related or otherwise.

If you believe you are showing signs of potential COVID -19 disease, immediately contact your physician for testing and follow the doctor’s advice, which may include keeping yourself quarantined until you know you are negative for the virus.

Additionally, here is a link to the State Department’s travel advisory, if needed.

************************************************************

Some additional resources that may be helpful for our community include:

FARE is working to bridge divides and share useful information through online resources and virtual fellowship.

COVID-19 VACCINE UPDATE

February 17, 2021

Please see the below template letter TMS sent to our MA Governor. It can be amended to be appropriate for your state, and send it to your governor and representatives to urge them to make vaccines available in health care facility for our community. 

 TMS Advocacy Letter for COVID19 Vaccine in Healthcare Facilities

February 3, 2021

In the published correspondence from Dr. Mariana Castells and colleagues to the Journal of Allergy and Clinical Immunology, the successful vaccination of 2 individuals with mast cell diseases with mRNA vaccines to COVID is reviewed. The two healthcare workers have systemic and cutaneous mastocytosis, and symptoms of mast cell activation (including anaphylaxis).

Rama TA, Moreira A, Castells M. mRNA COVID-19 vaccine is well tolerated in patients with cutaneous and systemic mastocytosis with mast cell activation symptoms and anaphylaxis. 
Published: January 19, 2021 DOI: https://doi.org/10.1016/j.jaci.2021.01.004

December 22, 2020

Our physicians recommend that patients with mast cell disease premedicate with an H1 blocker such as cetirizine (Zyrtec) 10 mg for adults, one hour prior to getting the vaccine. (Please consult with your pediatrician or allergist for pediatric dosing). Some of the physicians also recommend Benadryl (diphenhydramine) as an alternative if you cannot tolerate Zyrtec with the caution that it can cause drowsiness and make some patients, especially the elderly, prone to falls and fractures. Please discuss with your mast cell disease specialist which H1 blocker might be right for you to use, and to obtain the correct dosing to be given one hour prior to receiving the COVID-19 vaccine. 
 
All patients should carry an UNEXPIRED Epi-Pen or other form of injectable epinephrine with them to the vaccine administration site. Patients with a mast cell disease should receive the vaccine in a healthcare setting where anaphylaxis can be treated, should it occur, and should remain there for 30 minutes after the vaccine is administered before leaving for home.
 
Since the Moderna vaccine is an mRNA vaccine like the Pfizer vaccine, recommendations for use are the same. However, these recommendations are based on currently available information and may be changed/updated as more clinical data becomes available.
 
Thank you.
Warmly,
The TMS/AIM team and other physician advisors from our TMS Medical Advisory Board

 

 

COVID-19 PFIZER VACCINE

December 15, 2020

Our mast cell disease specialists have recommended following the ACAAI advice regarding the Pfizer COVID19 Vaccine. If you have a history of Guillain-Barre syndrome, please consult with your physician about receiving this vaccine.

American College of Allergy, Asthma, and Immunology (ACAAI) Guidance on Risk of Allergic Reactions to the Pfizer-BioNTech COVID-19 Vaccine

ARLINGTON HEIGHTS (Dec. 14, 2020) – With the emergency use authorization of the Pfizer-BioNTech COVID-19 vaccine by the FDA on December 11, 2020, and distribution beginning today, the American College of Allergy, Asthma and Immunology COVID-19 Vaccine Task Force recommends the following guidance related to risk of an allergic reaction on vaccination for those who receive the vaccine. These recommendations are based on best knowledge to date but could change at any time, pending new information and further guidance from the FDA or CDC.

  1. Allergic reactions to vaccines, in general, are rare with the incidence of anaphylaxis estimated at 1.31 in 1 million doses given.
  2. Individuals with common allergies to medications, foods, inhalants, insects, and latex are no more likely than the general public to have an allergic reaction to the Pfizer-BioNTech COVID-19 vaccine. Those patients should be informed of the benefits of the vaccine versus its risks.
  3. The Pfizer-BioNTech COVID-19 vaccine should be administered in a health care setting where anaphylaxis can be treated. All individuals must be observed for at least 20-30 minutes after injection to monitor for any adverse reaction. All anaphylactic reactions should be managed immediately, with epinephrine as the first line treatment. 
  4. The Pfizer-BioNTech COVID-19 vaccine should not be administered to individuals with a known history of a severe allergic reaction to polyethylene glycol as it is a component of this vaccine that is known to cause anaphylaxis. 
  5. Data related to risk in individuals with a history of allergic reactions to previous vaccinations and/or mast cell activation syndrome/idiopathic anaphylaxis is very limited and evolving. A decision to receive the Pfizer-BioNTech COVID-19 vaccine should be undertaken by you with your physician or other provider administering the vaccine using their professional judgment balancing the benefits and risks associated with taking the vaccine. 
  6. The Pfizer-BioNTech COVID-19 vaccine is not a live vaccine and it can be administered to immunocompromised patients. Physicians and other providers should inform such immunocompromised patients of the possibility of a diminished immune response to the vaccine. We do not know at this time if people with a weakened immune system will respond to the vaccine and be protected from COVID-19. 
  7. If you have questions related to the risk of an allergic reaction to the Pfizer-BioNTech COVID-19 vaccine, contact your local board-certified allergist/immunologist.

December 11, 2020

Just released: FDA Emergency Use Authorization Vaccines explained. TMS continues to collaborate with our mast cell disease specialists and will keep you informed as we learn more about FDA regulations.


December 10, 2020

On behalf of TMS, our board members Valerie Slee, Board Chair and Jan Hempstead, Patient Care Coordination Chair have contacted our Mast Cell Disease specialists regarding the recent release of the Pfizer COVID-19 vaccine’s dissemination dates throughout multiple states. We understand your concerns whether or not to take this version of COVID-19 vaccine if you have a mast cell disease. In lieu of the fact that two individuals had an anaphylaxis reaction to the Pfizer COVID-19 vaccine, there will be additional options for patients to consider as the Moderna vaccine will be released shortly, as well as two other vaccines yet to be released. In the meantime, please consult with your physician and stay tuned for updates coming soon.

Today, the FDA met regarding use of the Pfizer COVID19 vaccine in patients with severe food, medication and/or vaccine allergies. TMS will continue to inform our community as we learn more about the specifics of the Pfizer COVID19 vaccine, and consult with our mast cell disease specialists. We expect a statement from the FDA in the next 24-48 hours. Thank you for your patience. 

December 9, 2020

TMS is in touch with physicians and patient groups throughout the world, and we will keep you informed as we learn more of the evolving Pfizer COVID19 vaccine. It’s vital that we take the pandemic and vaccine seriously in our community at all times, as the goal of TMS is always to protect and advocate for our patients and families. When it’s time to take the vaccine in the US we will consult with our Medical Advisory Board and share recommendations to ensure safety.

RISK AND MANAGEMENT OF PATIENTS WITH MASTOCYTOSIS AND MAST CELL ACTIVATION SYNDROME (MCAS) IN THE SARS-COV-2 (COVID-19) PANDEMIC: EXPERT OPINIONS

September 28, 2020

In a recent article (June 2020) released by an international group of physicians who treat mast cell diseases, recommendations regarding managing a mast cell disease in the context of COVID-19 are discussed. The potential of mast cell participation in COVID-19 infection is reviewed, including cytokine storms, but the lack of definitive evidence regarding whether or how mast cells participate is emphasized. For most patients, the risk of acquisition or transmission of the virus is the same as it is for most people without a mast cell disease. Comorbid conditions (e.g. obesity, hypertension, diabetes mellitus, arterial hypertension, cardiovascular diseases and chronic respiratory tract diseases, cancer requiring chemotherapy, and immunological disorders) are the major determinants of outcome based on the current state of knowledge. The discussion of immune function is important as most patients in our community have normal immune function, although those on immunosuppressive agents or chemotherapy or with known immune deficiencies may need additional precautions that are outlined. Modifications to medication regimens for those with mastocytosis are presented in table form. Finally, specific recommendations for how to treat patients with mast cell diseases who test positive for COVID-19 are included. 

Review of this article with your physician is encouraged in order to make sure that your medications are continued as recommended and to ensure that if you do contract COVID-19, your treatment is made based on current guidelines. These guidelines are based on expert opinion and are not data driven; as data gathered from patients around the world with mast cell diseases and COVID-19 are published, these recommendation will be updated, and The Mast Cell Disease Society, Inc. (TMS) will publicize those findings to the mast cell disease community.

Valent P, Akin C, Bonadonna P, et al. Risk and management of patients with mastocytosis and MCAS in the SARS-CoV-2 (COVID-19) pandemic: Expert opinions. J Allergy Clin Immunol. 2020 Aug;146(2):300-306. https://www.jacionline.org/article/S0091-6749(20)30839-3/pdf

TMS Research, Advocacy and Education Committees
Celeste Finnerty, PhD; Barbara Ruby, BS, MA; Nicole Fox, MSN, RN, OCN; Valerie M. Slee, RN, BSN; Susan Jennings, PhD.

Many thanks to Mariana Castells, MD, PhD; Matthew J. Hamilton, MD, and Matthew Giannetti, MD, for reviewing this text.

COVID-19 STATEMENT FROM THE MASTOCYTOSIS SOCIETY, INC. (TMS) AND PHYSICIANS FROM TMS MEDICIAL ADVISORY BOARD

March 14, 2020

There have been many questions from patients affected by mast cell disease about the new coronavirus and if there are any precautions or changes in their medical management that should be undertaken. The Mastocytosis Society, Inc. (TMS) has contacted members of our Medical Advisory Board for assistance in addressing these questions. Our physicians advise that it is still unknown why some of the coronavirus patients have no or only mild symptoms whereas others are severely ill. Because of this, it is very important that everyone follow the guidance established by the NIH, the CDC and the federal task force, while taking into account their own personal reactivities (e.g., alcohol-based products may not be tolerated by some mast cell disease patients)

https://www.cdc.gov/coronavirus/2019-nCoV/index.html

Elderly patients and patients with cardiac, lung or renal disease, diabetes, and/or known immunodeficiency are at increased risk for severe symptoms as described by the World Health Organization (WHO). What we do not know is whether or not patients of any age, with any form of mast cell disease, including mastocytosis, are at increased risk. Due to this unknown risk, we are advising patients affected by mast cell disease to consider taking extra precautions as for potentially vulnerable populations, as described in the link below:

https://www.cdc.gov/coronavirus/2019-ncov/specific-groups/high-risk-complications.html

If you have any high-risk factors or are immunocompromised due to disease or medications used to treat disease, please contact your physician for further instructions.

While there is not yet complete data, it appears acute lung injury caused by SARS-CoV (note: the virus is SARS-CoV2; the disease is termed COVID-19) infection results from aggressive inflammation initiated by viral replication. This replication affects multiple cell types (including airway and alveolar epithelial cells, vascular endothelial cells, lymphocytes and macrophages) leading to cell death, and associated increased production of multiple pro-inflammatory cytokines and chemokines (which has been referred to as “cytokine storm”). It is likely mast cells are also involved, among the many other cell types affected, although mast cells can produce anti-inflammatory molecules which might have some protective effects. We are also just learning how to treat those infected with pharmacologic approaches and vaccine development is underway. If someone with mast cell disease gets infected and requires hospitalization, their doctor should be aware of their current mast cell disease medications, aware of the potential for cytokine storm, and be prepared to pivot to medicines as needed for this, mast cell related or otherwise.

If you believe you are showing signs of potential COVID -19 disease, immediately contact your physician for testing and follow the doctor’s advice, which may include keeping yourself quarantined until you know you are negative for the virus.

Additionally, here is a link to the State Department’s travel advisory, if needed.

************************************************************

Some additional resources that may be helpful for our community include:

FARE is working to bridge divides and share useful information through online resources and virtual fellowship.

COVID-19 VACCINE UPDATE

February 17, 2021

Please see the below template letter TMS sent to our MA Governor. It can be amended to be appropriate for your state, and send it to your governor and representatives to urge them to make vaccines available in health care facility for our community. 

 TMS Advocacy Letter for COVID19 Vaccine in Healthcare Facilities

February 3, 2021

In the published correspondence from Dr. Mariana Castells and colleagues to the Journal of Allergy and Clinical Immunology, the successful vaccination of 2 individuals with mast cell diseases with mRNA vaccines to COVID is reviewed. The two healthcare workers have systemic and cutaneous mastocytosis, and symptoms of mast cell activation (including anaphylaxis).

Rama TA, Moreira A, Castells M. mRNA COVID-19 vaccine is well tolerated in patients with cutaneous and systemic mastocytosis with mast cell activation symptoms and anaphylaxis. 
Published: January 19, 2021 DOI: https://doi.org/10.1016/j.jaci.2021.01.004

December 22, 2020

Our physicians recommend that patients with mast cell disease premedicate with an H1 blocker such as cetirizine (Zyrtec) 10 mg for adults, one hour prior to getting the vaccine. (Please consult with your pediatrician or allergist for pediatric dosing). Some of the physicians also recommend Benadryl (diphenhydramine) as an alternative if you cannot tolerate Zyrtec with the caution that it can cause drowsiness and make some patients, especially the elderly, prone to falls and fractures. Please discuss with your mast cell disease specialist which H1 blocker might be right for you to use, and to obtain the correct dosing to be given one hour prior to receiving the COVID-19 vaccine. 
 
All patients should carry an UNEXPIRED Epi-Pen or other form of injectable epinephrine with them to the vaccine administration site. Patients with a mast cell disease should receive the vaccine in a healthcare setting where anaphylaxis can be treated, should it occur, and should remain there for 30 minutes after the vaccine is administered before leaving for home.
 
Since the Moderna vaccine is an mRNA vaccine like the Pfizer vaccine, recommendations for use are the same. However, these recommendations are based on currently available information and may be changed/updated as more clinical data becomes available.
 
Thank you.
Warmly,
The TMS/AIM team and other physician advisors from our TMS Medical Advisory Board

 

 

COVID-19 PFIZER VACCINE

December 15, 2020

Our mast cell disease specialists have recommended following the ACAAI advice regarding the Pfizer COVID19 Vaccine. If you have a history of Guillain-Barre syndrome, please consult with your physician about receiving this vaccine.

American College of Allergy, Asthma, and Immunology (ACAAI) Guidance on Risk of Allergic Reactions to the Pfizer-BioNTech COVID-19 Vaccine

ARLINGTON HEIGHTS (Dec. 14, 2020) – With the emergency use authorization of the Pfizer-BioNTech COVID-19 vaccine by the FDA on December 11, 2020, and distribution beginning today, the American College of Allergy, Asthma and Immunology COVID-19 Vaccine Task Force recommends the following guidance related to risk of an allergic reaction on vaccination for those who receive the vaccine. These recommendations are based on best knowledge to date but could change at any time, pending new information and further guidance from the FDA or CDC.

  1. Allergic reactions to vaccines, in general, are rare with the incidence of anaphylaxis estimated at 1.31 in 1 million doses given.
  2. Individuals with common allergies to medications, foods, inhalants, insects, and latex are no more likely than the general public to have an allergic reaction to the Pfizer-BioNTech COVID-19 vaccine. Those patients should be informed of the benefits of the vaccine versus its risks.
  3. The Pfizer-BioNTech COVID-19 vaccine should be administered in a health care setting where anaphylaxis can be treated. All individuals must be observed for at least 20-30 minutes after injection to monitor for any adverse reaction. All anaphylactic reactions should be managed immediately, with epinephrine as the first line treatment. 
  4. The Pfizer-BioNTech COVID-19 vaccine should not be administered to individuals with a known history of a severe allergic reaction to polyethylene glycol as it is a component of this vaccine that is known to cause anaphylaxis. 
  5. Data related to risk in individuals with a history of allergic reactions to previous vaccinations and/or mast cell activation syndrome/idiopathic anaphylaxis is very limited and evolving. A decision to receive the Pfizer-BioNTech COVID-19 vaccine should be undertaken by you with your physician or other provider administering the vaccine using their professional judgment balancing the benefits and risks associated with taking the vaccine. 
  6. The Pfizer-BioNTech COVID-19 vaccine is not a live vaccine and it can be administered to immunocompromised patients. Physicians and other providers should inform such immunocompromised patients of the possibility of a diminished immune response to the vaccine. We do not know at this time if people with a weakened immune system will respond to the vaccine and be protected from COVID-19. 
  7. If you have questions related to the risk of an allergic reaction to the Pfizer-BioNTech COVID-19 vaccine, contact your local board-certified allergist/immunologist.

December 11, 2020

Just released: FDA Emergency Use Authorization Vaccines explained. TMS continues to collaborate with our mast cell disease specialists and will keep you informed as we learn more about FDA regulations.


December 10, 2020

On behalf of TMS, our board members Valerie Slee, Board Chair and Jan Hempstead, Patient Care Coordination Chair have contacted our Mast Cell Disease specialists regarding the recent release of the Pfizer COVID-19 vaccine’s dissemination dates throughout multiple states. We understand your concerns whether or not to take this version of COVID-19 vaccine if you have a mast cell disease. In lieu of the fact that two individuals had an anaphylaxis reaction to the Pfizer COVID-19 vaccine, there will be additional options for patients to consider as the Moderna vaccine will be released shortly, as well as two other vaccines yet to be released. In the meantime, please consult with your physician and stay tuned for updates coming soon.

Today, the FDA met regarding use of the Pfizer COVID19 vaccine in patients with severe food, medication and/or vaccine allergies. TMS will continue to inform our community as we learn more about the specifics of the Pfizer COVID19 vaccine, and consult with our mast cell disease specialists. We expect a statement from the FDA in the next 24-48 hours. Thank you for your patience. 

December 9, 2020

TMS is in touch with physicians and patient groups throughout the world, and we will keep you informed as we learn more of the evolving Pfizer COVID19 vaccine. It’s vital that we take the pandemic and vaccine seriously in our community at all times, as the goal of TMS is always to protect and advocate for our patients and families. When it’s time to take the vaccine in the US we will consult with our Medical Advisory Board and share recommendations to ensure safety.

RISK AND MANAGEMENT OF PATIENTS WITH MASTOCYTOSIS AND MAST CELL ACTIVATION SYNDROME (MCAS) IN THE SARS-COV-2 (COVID-19) PANDEMIC: EXPERT OPINIONS

September 28, 2020

In a recent article (June 2020) released by an international group of physicians who treat mast cell diseases, recommendations regarding managing a mast cell disease in the context of COVID-19 are discussed. The potential of mast cell participation in COVID-19 infection is reviewed, including cytokine storms, but the lack of definitive evidence regarding whether or how mast cells participate is emphasized. For most patients, the risk of acquisition or transmission of the virus is the same as it is for most people without a mast cell disease. Comorbid conditions (e.g. obesity, hypertension, diabetes mellitus, arterial hypertension, cardiovascular diseases and chronic respiratory tract diseases, cancer requiring chemotherapy, and immunological disorders) are the major determinants of outcome based on the current state of knowledge. The discussion of immune function is important as most patients in our community have normal immune function, although those on immunosuppressive agents or chemotherapy or with known immune deficiencies may need additional precautions that are outlined. Modifications to medication regimens for those with mastocytosis are presented in table form. Finally, specific recommendations for how to treat patients with mast cell diseases who test positive for COVID-19 are included. 

Review of this article with your physician is encouraged in order to make sure that your medications are continued as recommended and to ensure that if you do contract COVID-19, your treatment is made based on current guidelines. These guidelines are based on expert opinion and are not data driven; as data gathered from patients around the world with mast cell diseases and COVID-19 are published, these recommendation will be updated, and The Mast Cell Disease Society, Inc. (TMS) will publicize those findings to the mast cell disease community.

Valent P, Akin C, Bonadonna P, et al. Risk and management of patients with mastocytosis and MCAS in the SARS-CoV-2 (COVID-19) pandemic: Expert opinions. J Allergy Clin Immunol. 2020 Aug;146(2):300-306. https://www.jacionline.org/article/S0091-6749(20)30839-3/pdf

TMS Research, Advocacy and Education Committees
Celeste Finnerty, PhD; Barbara Ruby, BS, MA; Nicole Fox, MSN, RN, OCN; Valerie M. Slee, RN, BSN; Susan Jennings, PhD.

Many thanks to Mariana Castells, MD, PhD; Matthew J. Hamilton, MD, and Matthew Giannetti, MD, for reviewing this text.

COVID-19 STATEMENT FROM THE MASTOCYTOSIS SOCIETY, INC. (TMS) AND PHYSICIANS FROM TMS MEDICIAL ADVISORY BOARD

March 14, 2020

There have been many questions from patients affected by mast cell disease about the new coronavirus and if there are any precautions or changes in their medical management that should be undertaken. The Mastocytosis Society, Inc. (TMS) has contacted members of our Medical Advisory Board for assistance in addressing these questions. Our physicians advise that it is still unknown why some of the coronavirus patients have no or only mild symptoms whereas others are severely ill. Because of this, it is very important that everyone follow the guidance established by the NIH, the CDC and the federal task force, while taking into account their own personal reactivities (e.g., alcohol-based products may not be tolerated by some mast cell disease patients)

https://www.cdc.gov/coronavirus/2019-nCoV/index.html

Elderly patients and patients with cardiac, lung or renal disease, diabetes, and/or known immunodeficiency are at increased risk for severe symptoms as described by the World Health Organization (WHO). What we do not know is whether or not patients of any age, with any form of mast cell disease, including mastocytosis, are at increased risk. Due to this unknown risk, we are advising patients affected by mast cell disease to consider taking extra precautions as for potentially vulnerable populations, as described in the link below:

https://www.cdc.gov/coronavirus/2019-ncov/specific-groups/high-risk-complications.html

If you have any high-risk factors or are immunocompromised due to disease or medications used to treat disease, please contact your physician for further instructions.

While there is not yet complete data, it appears acute lung injury caused by SARS-CoV (note: the virus is SARS-CoV2; the disease is termed COVID-19) infection results from aggressive inflammation initiated by viral replication. This replication affects multiple cell types (including airway and alveolar epithelial cells, vascular endothelial cells, lymphocytes and macrophages) leading to cell death, and associated increased production of multiple pro-inflammatory cytokines and chemokines (which has been referred to as “cytokine storm”). It is likely mast cells are also involved, among the many other cell types affected, although mast cells can produce anti-inflammatory molecules which might have some protective effects. We are also just learning how to treat those infected with pharmacologic approaches and vaccine development is underway. If someone with mast cell disease gets infected and requires hospitalization, their doctor should be aware of their current mast cell disease medications, aware of the potential for cytokine storm, and be prepared to pivot to medicines as needed for this, mast cell related or otherwise.

If you believe you are showing signs of potential COVID -19 disease, immediately contact your physician for testing and follow the doctor’s advice, which may include keeping yourself quarantined until you know you are negative for the virus.

Additionally, here is a link to the State Department’s travel advisory, if needed.

************************************************************

Some additional resources that may be helpful for our community include:

FARE is working to bridge divides and share useful information through online resources and virtual fellowship.

COVID-19 VACCINE UPDATE

February 17, 2021

Please see the below template letter TMS sent to our MA Governor. It can be amended to be appropriate for your state, and send it to your governor and representatives to urge them to make vaccines available in health care facility for our community. 

 TMS Advocacy Letter for COVID19 Vaccine in Healthcare Facilities

February 3, 2021

In the published correspondence from Dr. Mariana Castells and colleagues to the Journal of Allergy and Clinical Immunology, the successful vaccination of 2 individuals with mast cell diseases with mRNA vaccines to COVID is reviewed. The two healthcare workers have systemic and cutaneous mastocytosis, and symptoms of mast cell activation (including anaphylaxis).

Rama TA, Moreira A, Castells M. mRNA COVID-19 vaccine is well tolerated in patients with cutaneous and systemic mastocytosis with mast cell activation symptoms and anaphylaxis. 
Published: January 19, 2021 DOI: https://doi.org/10.1016/j.jaci.2021.01.004

December 22, 2020

Our physicians recommend that patients with mast cell disease premedicate with an H1 blocker such as cetirizine (Zyrtec) 10 mg for adults, one hour prior to getting the vaccine. (Please consult with your pediatrician or allergist for pediatric dosing). Some of the physicians also recommend Benadryl (diphenhydramine) as an alternative if you cannot tolerate Zyrtec with the caution that it can cause drowsiness and make some patients, especially the elderly, prone to falls and fractures. Please discuss with your mast cell disease specialist which H1 blocker might be right for you to use, and to obtain the correct dosing to be given one hour prior to receiving the COVID-19 vaccine. 
 
All patients should carry an UNEXPIRED Epi-Pen or other form of injectable epinephrine with them to the vaccine administration site. Patients with a mast cell disease should receive the vaccine in a healthcare setting where anaphylaxis can be treated, should it occur, and should remain there for 30 minutes after the vaccine is administered before leaving for home.
 
Since the Moderna vaccine is an mRNA vaccine like the Pfizer vaccine, recommendations for use are the same. However, these recommendations are based on currently available information and may be changed/updated as more clinical data becomes available.
 
Thank you.
Warmly,
The TMS/AIM team and other physician advisors from our TMS Medical Advisory Board

 

 

COVID-19 PFIZER VACCINE

December 15, 2020

Our mast cell disease specialists have recommended following the ACAAI advice regarding the Pfizer COVID19 Vaccine. If you have a history of Guillain-Barre syndrome, please consult with your physician about receiving this vaccine.

American College of Allergy, Asthma, and Immunology (ACAAI) Guidance on Risk of Allergic Reactions to the Pfizer-BioNTech COVID-19 Vaccine

ARLINGTON HEIGHTS (Dec. 14, 2020) – With the emergency use authorization of the Pfizer-BioNTech COVID-19 vaccine by the FDA on December 11, 2020, and distribution beginning today, the American College of Allergy, Asthma and Immunology COVID-19 Vaccine Task Force recommends the following guidance related to risk of an allergic reaction on vaccination for those who receive the vaccine. These recommendations are based on best knowledge to date but could change at any time, pending new information and further guidance from the FDA or CDC.

  1. Allergic reactions to vaccines, in general, are rare with the incidence of anaphylaxis estimated at 1.31 in 1 million doses given.
  2. Individuals with common allergies to medications, foods, inhalants, insects, and latex are no more likely than the general public to have an allergic reaction to the Pfizer-BioNTech COVID-19 vaccine. Those patients should be informed of the benefits of the vaccine versus its risks.
  3. The Pfizer-BioNTech COVID-19 vaccine should be administered in a health care setting where anaphylaxis can be treated. All individuals must be observed for at least 20-30 minutes after injection to monitor for any adverse reaction. All anaphylactic reactions should be managed immediately, with epinephrine as the first line treatment. 
  4. The Pfizer-BioNTech COVID-19 vaccine should not be administered to individuals with a known history of a severe allergic reaction to polyethylene glycol as it is a component of this vaccine that is known to cause anaphylaxis. 
  5. Data related to risk in individuals with a history of allergic reactions to previous vaccinations and/or mast cell activation syndrome/idiopathic anaphylaxis is very limited and evolving. A decision to receive the Pfizer-BioNTech COVID-19 vaccine should be undertaken by you with your physician or other provider administering the vaccine using their professional judgment balancing the benefits and risks associated with taking the vaccine. 
  6. The Pfizer-BioNTech COVID-19 vaccine is not a live vaccine and it can be administered to immunocompromised patients. Physicians and other providers should inform such immunocompromised patients of the possibility of a diminished immune response to the vaccine. We do not know at this time if people with a weakened immune system will respond to the vaccine and be protected from COVID-19. 
  7. If you have questions related to the risk of an allergic reaction to the Pfizer-BioNTech COVID-19 vaccine, contact your local board-certified allergist/immunologist.

December 11, 2020

Just released: FDA Emergency Use Authorization Vaccines explained. TMS continues to collaborate with our mast cell disease specialists and will keep you informed as we learn more about FDA regulations.


December 10, 2020

On behalf of TMS, our board members Valerie Slee, Board Chair and Jan Hempstead, Patient Care Coordination Chair have contacted our Mast Cell Disease specialists regarding the recent release of the Pfizer COVID-19 vaccine’s dissemination dates throughout multiple states. We understand your concerns whether or not to take this version of COVID-19 vaccine if you have a mast cell disease. In lieu of the fact that two individuals had an anaphylaxis reaction to the Pfizer COVID-19 vaccine, there will be additional options for patients to consider as the Moderna vaccine will be released shortly, as well as two other vaccines yet to be released. In the meantime, please consult with your physician and stay tuned for updates coming soon.

Today, the FDA met regarding use of the Pfizer COVID19 vaccine in patients with severe food, medication and/or vaccine allergies. TMS will continue to inform our community as we learn more about the specifics of the Pfizer COVID19 vaccine, and consult with our mast cell disease specialists. We expect a statement from the FDA in the next 24-48 hours. Thank you for your patience. 

December 9, 2020

TMS is in touch with physicians and patient groups throughout the world, and we will keep you informed as we learn more of the evolving Pfizer COVID19 vaccine. It’s vital that we take the pandemic and vaccine seriously in our community at all times, as the goal of TMS is always to protect and advocate for our patients and families. When it’s time to take the vaccine in the US we will consult with our Medical Advisory Board and share recommendations to ensure safety.

RISK AND MANAGEMENT OF PATIENTS WITH MASTOCYTOSIS AND MAST CELL ACTIVATION SYNDROME (MCAS) IN THE SARS-COV-2 (COVID-19) PANDEMIC: EXPERT OPINIONS

September 28, 2020

In a recent article (June 2020) released by an international group of physicians who treat mast cell diseases, recommendations regarding managing a mast cell disease in the context of COVID-19 are discussed. The potential of mast cell participation in COVID-19 infection is reviewed, including cytokine storms, but the lack of definitive evidence regarding whether or how mast cells participate is emphasized. For most patients, the risk of acquisition or transmission of the virus is the same as it is for most people without a mast cell disease. Comorbid conditions (e.g. obesity, hypertension, diabetes mellitus, arterial hypertension, cardiovascular diseases and chronic respiratory tract diseases, cancer requiring chemotherapy, and immunological disorders) are the major determinants of outcome based on the current state of knowledge. The discussion of immune function is important as most patients in our community have normal immune function, although those on immunosuppressive agents or chemotherapy or with known immune deficiencies may need additional precautions that are outlined. Modifications to medication regimens for those with mastocytosis are presented in table form. Finally, specific recommendations for how to treat patients with mast cell diseases who test positive for COVID-19 are included. 

Review of this article with your physician is encouraged in order to make sure that your medications are continued as recommended and to ensure that if you do contract COVID-19, your treatment is made based on current guidelines. These guidelines are based on expert opinion and are not data driven; as data gathered from patients around the world with mast cell diseases and COVID-19 are published, these recommendation will be updated, and The Mast Cell Disease Society, Inc. (TMS) will publicize those findings to the mast cell disease community.

Valent P, Akin C, Bonadonna P, et al. Risk and management of patients with mastocytosis and MCAS in the SARS-CoV-2 (COVID-19) pandemic: Expert opinions. J Allergy Clin Immunol. 2020 Aug;146(2):300-306. https://www.jacionline.org/article/S0091-6749(20)30839-3/pdf

TMS Research, Advocacy and Education Committees
Celeste Finnerty, PhD; Barbara Ruby, BS, MA; Nicole Fox, MSN, RN, OCN; Valerie M. Slee, RN, BSN; Susan Jennings, PhD.

Many thanks to Mariana Castells, MD, PhD; Matthew J. Hamilton, MD, and Matthew Giannetti, MD, for reviewing this text.

COVID-19 STATEMENT FROM THE MASTOCYTOSIS SOCIETY, INC. (TMS) AND PHYSICIANS FROM TMS MEDICIAL ADVISORY BOARD

March 14, 2020

There have been many questions from patients affected by mast cell disease about the new coronavirus and if there are any precautions or changes in their medical management that should be undertaken. The Mastocytosis Society, Inc. (TMS) has contacted members of our Medical Advisory Board for assistance in addressing these questions. Our physicians advise that it is still unknown why some of the coronavirus patients have no or only mild symptoms whereas others are severely ill. Because of this, it is very important that everyone follow the guidance established by the NIH, the CDC and the federal task force, while taking into account their own personal reactivities (e.g., alcohol-based products may not be tolerated by some mast cell disease patients)

https://www.cdc.gov/coronavirus/2019-nCoV/index.html

Elderly patients and patients with cardiac, lung or renal disease, diabetes, and/or known immunodeficiency are at increased risk for severe symptoms as described by the World Health Organization (WHO). What we do not know is whether or not patients of any age, with any form of mast cell disease, including mastocytosis, are at increased risk. Due to this unknown risk, we are advising patients affected by mast cell disease to consider taking extra precautions as for potentially vulnerable populations, as described in the link below:

https://www.cdc.gov/coronavirus/2019-ncov/specific-groups/high-risk-complications.html

If you have any high-risk factors or are immunocompromised due to disease or medications used to treat disease, please contact your physician for further instructions.

While there is not yet complete data, it appears acute lung injury caused by SARS-CoV (note: the virus is SARS-CoV2; the disease is termed COVID-19) infection results from aggressive inflammation initiated by viral replication. This replication affects multiple cell types (including airway and alveolar epithelial cells, vascular endothelial cells, lymphocytes and macrophages) leading to cell death, and associated increased production of multiple pro-inflammatory cytokines and chemokines (which has been referred to as “cytokine storm”). It is likely mast cells are also involved, among the many other cell types affected, although mast cells can produce anti-inflammatory molecules which might have some protective effects. We are also just learning how to treat those infected with pharmacologic approaches and vaccine development is underway. If someone with mast cell disease gets infected and requires hospitalization, their doctor should be aware of their current mast cell disease medications, aware of the potential for cytokine storm, and be prepared to pivot to medicines as needed for this, mast cell related or otherwise.

If you believe you are showing signs of potential COVID -19 disease, immediately contact your physician for testing and follow the doctor’s advice, which may include keeping yourself quarantined until you know you are negative for the virus.

Additionally, here is a link to the State Department’s travel advisory, if needed.

************************************************************

Some additional resources that may be helpful for our community include:

FARE is working to bridge divides and share useful information through online resources and virtual fellowship.

Coronavirus (COVID-19)

March 10, 2020

Although mast cell disease patients are not at higher risk than the general population, some have co-existing conditions and/or take immunosuppressant medications that can put them in a higher risk category. Please see link below for at risk conditions and always check with your physician regarding medications and any co-morbid conditions.

Our medical advisory board recommends that mast cell disease patients follow CDC guidelines.

Also, there have been questions about whether mast cell disease patients need to wear masks in public as a precaution during this epidemic. (Please note that the following comments do not apply to anyone already using a mask for protection against environmental triggers, or upon the advice of their hematologist while on chemotherapy/cytoreductive therapy/tyrosine kinase inhibitors.) An article published in JAMA states only individuals with symptoms of respiratory infection such as coughing, sneezing and sometimes fever, health care workers and persons taking care of or in close contact with someone with a respiratory infection should wear masks.