Follow carefully the

General Recommendations

  • Wash your hands regularly
  • Cough or sneeze into your inner elbow or into a disposable tissue
  • Avoid touching your mouth, nose or eyes
  • Wave without shaking hands
  • Maintain a social distance of 2 m.
  • STAY HOME and avoid any unnecessary activities
  • Keep calm and rational so you will not get exhausted in this current stressful environment
  • If you suspect to be infected by COVID-19 virus, don’t hesitate to contact your physician or the specialist

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COVID-19 infection is causing:

  • In most cases, mild to moderate symptoms such as :
    sore throat, dry cough, flu, fever, muscle aches, headache, disordered smell and taste,
    diarrhea, abdominal pain
  • Possible effects on skin condition: rashes, urticaria, pruritus, lesions of toes and fingers
  • In only a fraction of cases: a severe progression, with particularly serious acute respiratory distress (ARDS)

Main risk factors of severity currently identified in the general population *

  • Respiratory failure
  • Pulmonary arterial hypertension
  • Cardiovascular disease, including hypertension
  • Organ transplantation
  • Renal failure
  • Immunosuppression (condition or medication)
  • Diabetics (uncontrolled, instable)
  • Morbid obesity
  • Patients over 70 years of age

* knowledge about the COVID-19 progresses weekly and may nuance over time

COVID-19 Patients INFECTED WIH COVID-19 VIRUS AND a rare disease of the SKIN

DO NOT modify yourself the treatment of your chronic disease EVEN if your disease doesn’t seem active.

IF you have any question : contact the specialist who manages your treatment

IF you have symptoms suggestive of COVID-19 infection :

  • CONTACT your physician
  • Do not introduce a non steroidal anti-inflammatory drug (NSAID) (ex.: ibuprofen…) without an advice of your physician**
  • Paracetamol can be used (Usually Adults: <1g X 3 /day, Children: < 4x 15mg/kg/day)

**Controversies exist about NSAID and COVID-19. Currently there is no scientific evidence establishing a link between ibuprofen and worsening of COVID-19 infection. More epidemiological studies are expected.

The risk of severe complications from the infection with the COVID 19 virus will NOT be increased by the rare disease of the skin in the majority of cases

  • The main risk factors are the same as those in general population
  • The instructions to patients are therefore similar to those given to the general population: please respect the STRONG RECOMMENDATIONS

For a minority of patients with a rare disease of the skin
Precautions more specific to their disease may arise

This particularly concerns patients taking immunosuppressive drugs and anti-inflammatory drugs (see below***)

that’s the case for:

  • auto-immune bullous diseases
  • auto-inflammatory diseases
  • some genodermatoses,
  • cancer treatments (eg. kinase inhibitors or immunotherapy)

Such patients have to :

  • Be particularly cautious about general preventive measures
  • NOT MODIFY their chronic treatments by themselves (a relapse of the disease could be more dangerous than the COVID-19 infection)
  • NOT introduce new treatments without a medical advice
  • Take a medical advice from the specialist who manages your rare skin disease

The following drugs do not make you more vulnerable if you are infected with the COVID-19 virus *

  • Antibiotics
  • Anti-histaminics
  • Biologic agents (some of them) ****
  • Colchicine
  • Dapsone (in the absence of methemoglobinnemia)
  • Hydroxychloroquine
  • Intravenous immunoglobulins
  • Opioids
  • Paracetamol
  • Sulfasalazine
  • Retinoids

The following drugs make you more vulnerable if you are infected with the COVID-19 virus

  • Jak inhibitors
  • Rituximab in the past 1 year
  • Ongoing immunosuppressive treatments such as, cyclosporine, cyclophosphamide, azathioprine, mycophenolate mofetil, glucocorticoids doses (like prednisolone> 20mg/day in adults) ****
  • Anti cancer drugs
  • Biologic agents (eg. Anti TNF blockers)****

* knowledge about the COVID-19 progresses weekly and may nuance over time  
**** currently no evidence for an increased risk for/during viral infections with: IL-17-, IL-23-, IL-12/23-blockers, fumaric acid, apremilast, omalizumab, dupiliumab, methotrexate

ESSENTIAL key messages TO TAKE HOME

Knowledge concerning COVID-19 is in constant progress and information about treatments could be updated according to the international research findings

FOLLOW carefully the general recommendations on preventive measures
DO NOT self-medicate: it can be very dangerous!
DO NOT stop or modify your treatment yourself: a relapse of your disease can be more severe than a COVID-19 infection!

If you have any questions relating to COVID-19 virus and your rare skin disease, contact the HCPs of your country for more information

These recommendations have been elaborated according to current literature data, recommendations of several scientific societies, and official recommendations of different European countries.
Some controversies remain, that is clearly underlined through the text.
Recommendations could be updated regularly according to the advances of Research and new epidemiological results.
Recommendations have been written by Christine Bodemer (France, head of the ERN Skin) with the involvement of the following HCP representatives (in alphabetic order): J. Bauer (Austria), M.C. Bolling (Netherlands), L. Bruckner-Tuderman (Germany), A. Bygum (Denmark), M. Caproni (Italy), I. Dreyfus (France), B. Didona (Italy), A. Diem (Austria), S. Emmert (Germany), A.K. Gaspar (Hungary), K. Giehl (Germany), A. Gostynski (The Netherlands), S. Guez (Italy), M. El Hachem (Italy), S. Hadj-Rabia (France). Hammersen (Germany), C. Has (Germany), J. Ingram (UK), G. Jemec (Denmark), P. Joly (France), V. Kucinskiene (Lithuania), M. Laimer (Austria), J. Mazereeuw (France), M. Medvecz (Hungary), D. M. Saunte (Denmark), A.W. Morgan (UK), C. Moss (UK), I. Neri (Italy),  M. Ogboli (UK), G.S Tiplica (Romania), E. O’Toole (UK), S. Oro (France), J. Panelius (Finland), C.M Salavastru (Romania), J. Setterfield (UK), C.C. Zouboulis (Germany)