The COVID-19 Outbreak Advice for UK patients with Mast Cell Diseases from UK Mast Cell Disease Doctors March 27, 2020
There is much we don’t know about how COVID-19 might affect mast cell disease patients.
We have heard now from a small number of people with a mast cell disease who also believe they have had COVID-19 (though no confirmed cases because testing is now only being done in hospital and none has required hospitalisation) and are at home and getting through it or have gotten through it.
If you have received a letter from the NHS advising you that you are considered “at risk of severe illness” please follow the instructions you have been sent. If you have not received such a letter (because you do not live in England or because the system has not identified you as extremely vulnerable) please consider following the advice below for your diagnosis.
1. CM, ISM, SSM and MCAS without additional medical conditions
Cutaneous mastocytosis (CM, also called UP, MPCM, DCM, Mastocytoma), Indolent Systemic Mastocytosis (ISM), Smouldering Systemic Mastocytosis or Mast Cell Activation Syndrome (MCAS) without any additional medical conditions (for example, involving heart, lung, or immunosuppression)
At greater risk of contracting the virus?
We are not aware of an increased risk of infection in the cutaneous (paediatric and adult) and indolent systemic patients with cutaneous involvement.
What precautions should I take?
We would suggest that this group aligns with the general population in terms of measures to minimize infection risk. This includes staying home and practicing social distancing. Those guidelines can be found here:
Can I take my regular medications for my mast celabout:blankl disease?
We are not aware of anti-mast cell mediator treatments (such as H1 or H2 blockers, montelukast or sodium cromoglycate) increasing a risk of catching or the severity of a viral infection.
We don’t know and won’t know until further into the pandemic whether steroids such as prednisolone being taken at the time of viral exposure have an adverse effect or no effect on the course of the virus. Therefore we would recommend caution but if you DO NOT have signs of COVID-19 (such as fever, new onset dry cough, or new onset shortness of breath) and you need a short rescue course then you should take it (for up to 3 days) and should inform your clinician.
We would recommend you take your usual medication and avoid triggers as usual. Stress may trigger episodes when you may need to consider increasing your anti – mediator treatments temporarily, (but usually no more than four times the recommended dose of a non-sedating antihistamine, such as cetirizine, loratadine or fexofenadine )
In addition, consider other methods of reducing stress/anxiety, such as mindfulness/meditation/gentle exercise….
Will COVID-19 make my mast cell disease worse?
Experience may show whether COVID-19 infection increases the symptoms of mast cell diseases and then a temporary increase in antihistamines could be given.
If concerned about new symptoms such as fever > 37.8 C or new persistent cough and/or increased shortness of breath – please contact 111 as per the guidelines.
https://www.nhs.uk/conditions/coronavirus-covid-19/symptoms-and-what-to-do/
2.CM, ISM, SSM or MCAS with additional medical conditions
Cutaneous Mastocytosis, Indolent Systemic Mastocytosis, Smouldering Systemic Mastocytosis or Mast Cell Activation Syndrome (MCAS) with additional medical conditions (for example, involving heart, lung or immunosuppression)
At greater risk of contracting the virus?
This group of patients may be at additional risk of contracting the virus due to immunosuppression either from a disease process (diagnoses such as chronic lung disease/high blood pressure/cardiac disorders/auto immune disorders) or because they are taking a medication that can cause immunosuppression (such as long term use of steroids such as prednisolone or immunosuppressive medication for any of these additional conditions).
What precautions should I take?
Patients who are immunosuppressed or who have an additional condition that makes them at particular risk of complications if they do contract the virus should be following the government’s guidelines to stay at home. Some in this category should be following the “extremely vulnerable” guidance (for example if you received a letter from the NHS to do so) and some may more appropriately follow the guidance for those who are just vulnerable.
If vulnerable –
If Extremely vulnerable
Can I take my regular medications for my mast cell disease?
We are not aware of anti-mast cell mediator treatments (such as H1 or H2 blockers, montelukast or sodium cromoglycate) increasing a risk of catching or the severity of a viral infection.
We don’t know and won’t know until further into the pandemic whether steroids such as prednisolone being taken at the time of viral exposure have an adverse effect or no effect on the course of the virus. Therefore we would recommend caution but if you DO NOT have signs of COVID-19 (such as fever, new onset dry cough, or new onset shortness of breath) and you need a short rescue course then you should take it (for up to 3 days) and should inform your clinician.
We would recommend you take your usual medication and avoid triggers as usual. Stress may trigger episodes when you may need to consider increasing your anti – mediator treatments temporarily, (but usually no more than four times the recommended dose of a non-sedating antihistamine, such as cetirizine, loratadine or fexofenadine).
In addition, consider other methods of reducing stress/anxiety, such as mindfulness/meditation/gentle exercise etc.
Will COVID-19 make my mast cell disease worse?
Experience may show whether COVID-19 infection increases the symptoms of mast cell diseases and then a temporary increase in antihistamines could be given.
If concerned about new symptoms such as fever > 37.8 C or new persistent cough and/or increased shortness of breath – please contact 111 as per the guidelines.
https://www.nhs.uk/conditions/coronavirus-covid-19/symptoms-and-what-to-do/
3. Advanced SM (SSM, SM-AHN, ASM or MCL)
Advanced forms of systemic mastocytosis (Systemic Mastocytosis with an Associated Haematologic Disease—SM-AHN; Aggressive Systemic Mastocytosis—ASM; Mast Cell Leukaemia—MCL)
At greater risk of contracting the virus?
This group of patients may be at additional risk of contracting the virus due to immunosuppression either from their mastocytosis or the associated haematological disease (such as MPN/CMML/MDS) or because they are taking a cytoreduction /targeted medication that can affect their immune system (such as Interferon Alpha, Midostaurin, Avapritinib, Hydroxycarbamide, Imatinib )
What precautions should I take?
Patients with these diagnoses should follow the government’s guidelines to stay at home at all times and avoid any face-to-face contact for a period of at least 12 weeks. Those guidelines can be found here: https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19
Can I take my regular medications for my mastocytosis?
We are not aware of anti-mast cell mediator treatments (such as H1 or H2 blockers, montelukast or sodium cromoglycate) increasing a risk of catching or the severity of a viral infection.
We don’t know and won’t know until further into the pandemic whether steroids such as prednisolone being taken at the time of viral exposure have an adverse effect or no effect on the course of the virus. Therefore we would recommend caution but if you DO NOT have signs of COVID-19 (such as fever, new onset dry cough, or new onset shortness of breath) and you need a short rescue course then you should take it (for up to 3 days) and should inform your clinician.
We would recommend you take your usual medication and avoid triggers as usual. Stress may trigger episodes when you may need to consider increasing your anti – mediator treatments temporarily, (but usually no more than four times the recommended dose of a non-sedating antihistamine, such as cetirizine, loratadine or fexofenadine).
In addition, consider other methods of reducing stress/anxiety, such as mindfulness/meditation/gentle exercise, etc.
Will COVID-19 make my mast cell disease worse?
Experience may show whether COVID-19 infection increases the symptoms of mast cell diseases and then a temporary increase in antihistamines could be given.
If concerned about new symptoms such as fever > 37.8 C or new persistent cough and/or increased shortness of breath – please contact 111 as per the guidelines.
https://www.nhs.uk/conditions/coronavirus-covid-19/symptoms-and-what-to-do/
INFORMATION FOR PATIENTS HOSPITALISED WITH COVID-19
*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. *
*Thanks to The Mastocytosis Society (US) and their medical advisory board for allowing us to share this text
IMPORTANT NOTE FOR DOCTORS
The life expectancy of MCAS and CM and ISM patients is similar to that of the general population. The decision to classify some MCAS and ISM patients as ‘vulnerable’ for COVID-19 infection must not have a negative impact on triage or other in-patient treatment related decisions, due to their excellent outcome.
Things you can do at home to keep your mast cells happier
- Keep taking your current medications (unless advised otherwise by your doctor).
- Reduce stress – don’t tune in to too many broadcasts, just enough to keep up with current guidance, keep occupied with hobbies, as stress is a trigger (and see extra tips below).
- Get some sunlight on any sunny days that you can and tolerate it. Getting out in the natural light is one of the major contributors to the production of Vitamin D in our body (a mast cell stabiliser).
- Include foods/supplements that have plenty of vitamin C and Zinc (if tolerated).
How do I look after my emotional well-being during this stressful time?
Feeling concerned or overwhelmed by the news of coronavirus is understandable, whether you are thinking about your own health and the possible impact, or for someone close to you. If you are feeling this way, remind yourself that there are practical things you can do:
- TRUST: You know your mast cell disease well, use all your usual techniques and strategies to stay well.
- ACKNOWLEDGE: notice and acknowledge the uncertainty, thoughts and worry as they come to mind.
- PAUSE & PULL BACK: Rather than respond to these try to pause and breathe. Remember: this may be the worry talking, thoughts are not statements or facts. These thoughts and feelings will pass.
- INFORM: Limit excessive exposure to the news/social media, if getting information, use up-to-date and reliable sources, eg. NHS website.
- CONNECT: Talk to someone about how you’re feeling. Reach out for support from others by phone, text or video.
- CALM: Stick to your normal routine as much as you are able to. Add in things that help you feel calm, e.g. breathing, calming music/sounds/tv.
- STAY PRESENT: Explore the present moment, because right now, in this moment, all is well. Notice your breathing. Notice the ground beneath you. Look around and notice what you see, what you hear, what you can touch, what you can smell. Right now. Then shift your focus of attention to something else – on what you need to do, on what you were doing before you noticed the worry or do something else – mindfully with your full attention.
Please note that this represents the collective opinions of mast cell disease clinicians; mast cell disease patients vary greatly in their disease presentation and symptoms. The situation may change rapidly. Please check for updates and if you are not certain discuss with your clinical team but bear in mind the pressures that they will be under.