HS + Covid-19

COVID-19 Vaccines: Information for People with HS & their Caregivers

We know that you and your family probably have many questions about the COVID-19 vaccines that are being approved by the U.S. Food and Drug Administration (FDA). We are here to help and provide you with the most current information:

  • Are COVID-19 vaccines safe?
  • How will the vaccines impact my HS? 
  • How and when will the vaccines be available?
  • When will HS patients be able to get a vaccine?

The information below reflects the questions we’ve received from patients and caregivers, and our responses are based on the latest information from unbiased and accurate sources. We will update this page as new information and guidance becomes available.

We are grateful to members of the Hidradenitis Suppurativa Foundation Board and the Engagement Committee for writing and reviewing this content. Updated December 17, 2020. Contributors to this document all personally feel confident in the vaccine and plan to be vaccinated as soon as the vaccine is made available to each member. 

What’s the latest on the first two COVID-19 vaccines?

The Moderna and Pfizer/BioNtech vaccines have completed phase 3 trials. This is the final phase of clinical trials before FDA approval. Early data suggests that the vaccines will be 90-95% (highly) effective. The vaccines are two shots. The two shots of the Pfizer vaccine are given 3 weeks (21 days) apart. The two shots of the Moderna vaccine are given 4 weeks (28 days) apart.

Traditional vaccines use weakened live or dead parts of the entire virus, which take longer to produce. Both of the Coronavirus vaccines use a small amount a material (RNA [ribonucleic acid]) that tells our cells to make a similar (but harmless) protein that resembles the actual coronavirus, and the body then builds memory and future protection to the actual coronavirus infection. The RNA in the vaccine is broken-down quickly by your body and can’t alter your DNA. These types of vaccines are expected to be as safe for patients on immunosuppressant and biologic medications as for the general population.  

How were the Coronavirus vaccines tested?

All vaccines are developed and approved through a three-phase clinical trial process, similar to the phases that are used to develop, test, and approve medications. You can learn more about the three trial phases, by downloading “The Vaccine Life Cycle” created by the Centers for Disease Control (CDC).  

Like drug development, vaccine development is a long process. In the United States, the FDA oversees all drugs, vaccines, and devices (laser, etc.) approvals. Recognizing the urgency and need for a COVID-19 vaccine, the FDA implemented an emergency process of reviewing and approving a vaccine.

Has the COVID-19 vaccine been carefully studied?

It’s important to understand that, even with the quick approval, all COVID-19 vaccines approved went through the three phases of vaccine clinical trials. These trials included more than 40,000 people for the Pfizer/BioNtech trials and approximately 30,000 people for the Moderna study. We are grateful to the people who participated in the clinical trials and helped us get the data on safety, effectiveness, and side-effects of the vaccines. Overall, the benefits outweigh any potential risks of the vaccines.

All of the vaccines will continue to be monitored (Phase IV of the clinical trial process) for the benefits and side effects among individuals receiving the vaccine.

If I have the COVID-19 vaccine can I give anything infectious to anyone?

No, the material (RNA) in the vaccine is not derived from the virus and your body won’t make the virus. The RNA in the vaccine is broken-down quickly by your body and can’t alter your DNA. The RNA simply used the machinery of your body to develop a picture of part of the virus so your immune system can recognize and fight it in the future if it sees the real virus. So, if you have the vaccine, you can’t spread the virus or immunity to anyone else. Each person has to get the vaccine to develop immunity.

Is it approved for pregnant or breastfeeding women?

Pregnant and lactating women weren’t in the first trials for the vaccine, but studies in pregnant women are planned. In addition, the effects on women in the clinical trials who became pregnant are being monitored. Since RNA vaccine are not live vaccines and the RNA in the vaccine is broken-down quickly by our cells after it’s used, experts believe that RNA vaccines are unlikely to pose a risk for people who are pregnant or breast-feeding.

If pregnant or breastfeeding women are part of a group that is recommended to receive a COVID-19 vaccine (e.g., healthcare personnel), they can choose to be vaccinated. 

Is there a risk of a severe allergic reaction?

When the Pfizer-BioNTech vaccine was given in the United Kingdom, 2 healthcare workers had an anaphylactic reaction, a severe type of allergic reaction, however, both had a history of this in the past.

People who had an anaphylactic reaction to a vaccine or injectable medicine should talk to their doctor, but can still receive the Pfizer vaccine. Anaphylactic reactions have not been reported with the Moderna vaccine.

People with allergies to other things, like food or pollen, do not need special precautions for the vaccine and are eligible to get it.

Some people say they get the ‘flu’ after getting a flu shot. How will I feel after I get the vaccine?

People who have the flu feel badly because their immune is reacting to the flu virus and fighting it off. Similarly, after getting the flu shot, people feel a similar way because their body is reacting in a similar way, gearing up for a fight, but just not realizing it’s not the ‘full’ flu virus. The benefit of the flu shot, and the reaction, is that it creates a memory in your immune system for that virus and it’ll be more prepared if you are actually exposed to the virus later.

So, when people get the COVID-19 vaccine and feel flu-like (fever, chills, headache, muscle aches), it’s because their immune system is reacting, preparing immune cells to fight off the Coronavirus fast and early before it can spread in the body or spread to other people. In the clinical trials, about 3 out of 4 people had some flu-like symptoms, but it was usually mild and went away in 1-2 days!

Are there any long-term side effects form the COVID-19 vaccine?

Researchers have been studying and working with RNA vaccines for decades. RNA vaccines have been studied before for flu, Zika, and rabies. Cancer research has also used RNA vaccines to trigger the immune system to target specific cancer cells. It’s predicted that RNA vaccines will be as safe or safer than typical vaccines since they don’t contain any live or killed virus and the RNA in the vaccine is broken-down quickly by your body and does not enter the nucleus of the cell, so doesn’t stay in you cells long-term.

It’s also important to balance vaccine risks against the risks of Coronavirus infection.  Coronavirus infection can also cause long-term side effects like lung damage, heart muscle damage, and blood vessel damage. Many of the long-term risks of Coronavirus infection are also unknown at this point.

If I think I had COVID-19 (or know I did), is it recommended for me to get vaccine?

The short answer is – yes, get the vaccine even if you had/think you had COVID-19. The vaccine is safe for people who had COVID-19 before.  You just need to recover from COVID-19 and meet the criteria to discontinue isolation, then talk to your provider. 

Is there a cost for the COVID-19 vaccine?

The vaccine is likely to result in little out-of-pocket cost to individuals. The Centers for Medicare and Medicaid Services is working to get the COVID-19 vaccine covered with no cost to seniors or low-income people with the government-funded health insurance programs. Commercial insurers and self-funded employer health plans are also likely to cover the cost of the vaccines due to rules in place by the federal government. Check with your insurance provider for exact coverage details for your individual plan. People without insurance can also get the vaccine at no cost, thanks to a Provider Relief Fund that healthcare providers who administer the vaccine to the uninsured can apply to for reimbursement.

There’s a lot of people talking about the vaccine and the companies…Any ideas about what to trust and managing my worries?

You may be questioning whether getting the COVID-19 vaccine is right for you, including worries about how quickly it was developed. There is also a lot of conflicting information and opinions on the internet. All of this and the stress of the pandemic, HS, and just life might have you feeling anxious. Here are some ways you can manage your worries as you consider the COVID-19 vaccine:

  • Limit your information sources to reputable medical organizations that provide specific data and references about the vaccine. Avoid getting your information from message boards, blogs, or other websites that may not be based on the best information. Any discussion that seems all positive or all negative, exaggerated, or extreme about the COVID-19 vaccine is probably not true or accurate, so skip it.
  • If you are unsure about getting the COVID-19 vaccine, try creating a pros and cons worksheet
  • Discuss your worries with your healthcare team. If this doesn’t help with your anxiety, you may want to meet with a counselor. Many counselors are helping people via telemedicine.

As more information becomes available about the vaccines, especially information that is important for people with HS, we will continue to update you.

Will COVID-19 vaccines interact with my biologic treatment for HS?

Biologic medicines treat HS by decreasing over-active parts of the immune system, but they don’t stop the immune system from working. We don’t think there will be any problem giving these vaccines to people with HS who are being treated with a biologic. Studies have shown that people being treated with a biologic are able to react to other vaccines and develop protection. We suggest talking to your providers BEFORE stopping any HS medication to get COVID vaccine.

Will COVID-19 vaccines interact with other medicines used to treat HS?

Many people with HS are treated with other medicines, like antibiotics and hormonal therapies (spironolactone, finasteride, metformin, and others). These medicines will not interact with the vaccine and wont’ cause any problems when you get the shots.

Who determines vaccine allocation when one is available?

The Centers for Disease Control and Prevention (CDC) is will have some guidance for how the vaccine should be given out. Each state will have their own plan for how the vaccine will be given-out and which groups of people will get it earlier.

The first people to get it will be: Health care personnel, Essential workers (Food and agriculture, transportation, education, energy, water and wastewater, law enforcement​), Older Adults (age 65 or older), and Those with High Risk Medical Condition.

Is HS a high risk medical condition because it’s an autoimmune disease?

No and no. HS is an autoinflammatory disease (an over active immune system) not an autoimmune disease, and based on data so far, HS is not a high-risk medical condition. People with HS who get COVID-19 are not more likely to be hospitalized or die. More information about HS patients who get COVID-19 can be found on the Global HS COVID-19 Registry website.

The high risk factors and medical conditions are:

  • Cancer
  • Chronic kidney disease
  • Emphysema, Chronic bronchitis, COPD (chronic obstructive pulmonary disease)
  • Heart conditions (heart failure, coronary artery disease, cardiomyopathy)
  • Organ or bone marrow transplant recipient
  • Obesity (BMI 30+)
  • Pregnancy
  • Sickle cell disease
  • Smoker
  • Diabetes
  • and older age:

Compared to younger adults, older adults are more likely to go into the hospital or die if they get COVD-19

Hospitalization Death
30-39 years 2x higher 4x higher
40-49 years 3x higher 10x higher
50-64 years 4x higher 30x higher
65-74 years 5x higher 90x higher
75-84 years 8x higher 220x higher
85+ years 13x higher 630x higher

Should I stop or reduce my biologic even though I don’t have any coronavirus symptoms or a confirmed infection?

The short answer is no. Stopping your medications puts you at a higher risk for HS flares, worsening symptoms, and needing stronger medicines to get the HS back to where it was.

Is there an approved treatment for COVID-19?

In short –No, but we wish there was. The hype claiming there are “cures” for COVID-19 is false and may give people a false sense of security.

There are no FDA-approved medicines for the treatment or prevention of COVID-19. The FDA has allowed some ‘emergency use’ for several treatments, but these have not been shown to be very effective.

Some biologics are being tested to treat COVID-19. Does that mean people who take these medications are protected against the Coronavirus?

Some biologics are being tested as potential therapies for a serious complication of COVID-19 called a ‘cytokine storm’. A cytokine storm is an extreme overactivity of the immune system that attacks the body’s own cells instead of the virus.

The best ways to protect yourself from COVID-19 is to keep using a mask, washing your hands, avoid touching your face, and using social distancing. If you are exposed to the virus or become symptomatic, contact your doctor right away.

I heard taking NSAIDs can worsen the Coronavirus. Should I stop taking NSAIDs?

NSAIDs (Ibuprofen, naproxen, and others) are often usedfor pain relief. There is no evidence that taking NSAIDs worsens the coronavirus or increases infection risk. People who need NSAIDs for pain relief can continue to use them as directed. 

RESOURCES

Who is at Increased Risk of COVID-19? (CDC)

Pfizer BioNTech COVID-19 Vaccine report (FDA)

Clinical Considerations for Use of Pfizer-BioNTech COVID-19 Vaccine (CDC)
Read more
Research Summary

Is COVID more risky for people treated for an immune disease?

Hidradenitis suppurativa (HS) is a condition caused by an over-active immune system and many of the treatments influence the immune system. At the start of the COVID pandemic, many people were taking medicines, like injected shots, for HS, psoriasis or other conditions. In the beginning there weren’t a lot of studies showing the benefits and risks of the treatments. In a new study led by Dr. Rebecca Haberman of New York University and published April 2020 in the New England Journal of Medicine, a group of doctors studied whether people being treated for immune diseases had more severe COVID.

Read more
Research

Global Registry for Hidradenitis Suppurativa + COVID-19

International HS experts have recently established the Global HS COVID-19 Registry to better understand the risk of infection and clinical course, track outcomes, and inform treatments of pediatric and adult HS patients in the setting of COVID-19. HS clinicians worldwide are encouraged to report ALL cases of COVID-19 in HS patients, regardless of severity – including asymptomatic patients detected through public health screenings.

Patients may also contribute to the Registry.

Information about the Registry as well as a link to report cases can be found at http://hscovid.ucsf.edu.

The success of this global collaborative effort depends on active participation by providers who care for HS patients, so broad sharing of the registry with colleagues treating HS patients is encouraged.

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HSF News

Frequently Asked Questions about Hidradenitis Suppurativa (HS) and COVID-19

Updated April 6th, 2020

This content was generated from a podcast.

FOR PROVIDERS

What is COVID-19, and how is it different from the flu or other infections we have dealt with?

• Coronaviruses are a large group of RNA viruses that cause respiratory illnesses. Mostly, COVID19
causes mild upper respiratory tract symptoms. Most morality occurs when the lower respiratory
tract is involved, with cytokine storm causing ARDS and shock.
• The novel coronavirus (SARS-CoV-2) occurs naturally, enters the body through respiratory
droplets (either inhaled or by touching mouths, nose, eyes) and causes the illness called COVID-
19.
• Coronavirus enters the cells of the lung via ACE receptors.
• Coronavirus can survive in the air for up to 8 hours, and can last for up to 72 hours on some
surfaces.
• Coronavirus is structurally different from the influenza virus. Compared to the seasonal flu, the
novel coronavirus causes more severe illness and has higher death rates (estimated to be 10x
higher).
• Based on limited data, all age groups can contract COVID-19. However, some subsets of people
are at higher risk of severe illness or death than others, including:
o Adults over age 65 years
o Infants
o People with heart, lung or kidney disease
o People with cancer undergoing cancer treatment
o People on immunosuppressive medications
• Symptoms of COVID-19 include fever, shortness of breath, cough, loss of smell, loss of taste, and
uncommonly nausea, vomiting, diarrhea. However, many people infected with this virus can
harbor and spread infection without any symptoms.
• HS itself does not appear to be a specific risk factor for COVID-19. However, if someone has any
of the associated comorbidities listed above or is on immunosuppressive medications, they may
have increased risk for developing severe illness if infected with the novel coronavirus.

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