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  • Denise Fixsen

Coronavirus/Covid & HS

Most with Hidradenitis Suppurativa are concerned about Coronavirus, and those on a biologic are especially nervous. The Coronavirus strain (Covid-19) is new and "unknown" to us. The best advice is to wash your hands, don't touch your face, wash surfaces frequently and stay home, especially if you don’t feel well. Please be sure to follow your country’s guidelines.

Do not stop taking your medications; if you are considering doing this please talk to your medical professional. There is no data on the influence of any medications, including biologics and immune suppressants, regarding Covid-19. If you have questions please speak to your doctor and/or providers; they should follow their current practice.


If you feel you have come in contact with the virus or are experiencing any of the symptoms of Covid-19, take the necessary steps (links below); this is for everyone, regardless if you have HS or if you’re taking a biologic.


Panicking, worrying, and stressing only causes lower immunity, and for many, can trigger flares.


HS Covid-19 global registry to monitor and report outcomes of Covid-19 in Hidradenitis Suppurativa:


Tell your doctor about this registry effort and visit the website for more info: https://hscovid.ucsf.edu/


Below is an infographic showing the initial findings from the Global Hidradenitis Suppurativa COVID-19 Registry, which were recently published online in the Journal of the American Academy of Dermatology. We put together this infographic to help share the data via social media.


Article on Dr. Haley Naik and her role as the principal investigator of the Global Hidradenitis Suppurativa COVID-19 Registry:


https://www.the-dermatologist.com/article/out-tunnel-understanding-hidradenitis-suppurativa


CDC guidelines for explanation booster / Immunosuppressive, tumor-necrosis (TNF) blockers, and other biologic agents that are immunosuppressive or immunomodulatory:


https://www.cdc.gov/vaccines/covid-19/hcp/immunocompromised-patients.html?CDC_AA_refVal=https%3A%2F%2Fwww.cdc.gov%2Fvaccines%2Fcovid-19%2Fclinical-considerations%2Fimmunocompromised-patients.html


Video from Dr. Jonathan Rick, Dermatology Resident at University of Arkansas Medical Sciences discussing the Covid 19 vaccine and biologics/biosimilars:


https://youtu.be/MObHOxyJCFY


Dr. Adam Friedman, professor and chair of dermatology at The George Washington University School of Medicine and Health Sciences in D.C.:


https://wtop.com/coronavirus/2021/08/dermatology-patients-might-need-three-versus-two-covid-19-shots-to-achieve-initial-full-immunity


COVID-19 Vaccines: Information for People with HS & their Caregivers - Information provided by the HS Foundation:


https://www.hs-foundation.org/is-covid-more-risky-for-people-treated-for-an-immune-disease


Regarding the coronavirus COVID-19 and biologics; many are concerned and are considering stopping their treatment. If you are considering stopping biologic treatment for HS, here are some things to consider before you do:

  • NEVER stop taking this or any medication without first speaking to your medical team.

  • By stopping and starting biologics your immune system can develop antibodies to the drug making the treatment less effective and for some it can stop working altogether; some people are more susceptible to this than others.

  • Most biologics can remain in your system up to 8 weeks (give or take), depending on the individual. If you feel it is too risky to be on a biologic during this time, technically, the risk factor would still exist until the medication is completely out of your system. In other words, the risk factor is not gone as soon as you've stopped taking the biologic.

  • If your treatment is working well, please take that into consideration. If you still elect to stop your treatment, be sure to discuss this with your physician prior to stopping the medication.

Just like before the virus, should you become ill while on a biologic, you would follow the same exact protocol; if you have a fever, typically you would contact your doctor and stop your treatment until you are feeling better. If you suspect you have come in contact with COVID-19, contact your doctor immediately.


Covid-19 (Coronavirus): Immunosuppressive treatments in dermatology:


https://www.skinhealthinfo.org.uk/covid-19-coronavirus-immunosuppressive-treatments


Survivor Corps - Covid-19 Survivors Support. Connecting you with the medical, scientific and academic research and support:


https://www.facebook.com/groups/COVID19survivorcorps/?ref=share


COVID Grief Network


If you are in your 20s or 30s and have lost someone to COVID, or have a friend or family member in your life who is seriously ill with COVID...


The COVID Grief Network aims to undo isolation for young adults grieving the illness or death of someone to coronavirus. We’re a 100% volunteer-run mutual aid network offering young adults two things: 1) free one-on-one support with a volunteer grief worker (therapists, healers, coaches, facilitators, spiritual directors, and others), and 2) a peer community of other young adults who are grieving in this moment.


Fill out a request for support form at our website to get connected: [www.covidgriefnetwork.org]

http://www.covidgriefnetwork.org/?fbclid=IwAR1Cklk5Trw3UpeJOw_iDWGT98LdnArPNUIYiS6b0Kwdwudrm9gbVNh6Drs)


Sign up to get connected to a grief worker here: https://docs.google.com/forms/d/e/1FAIpQLSfZ2msklM6gE6kDvsvktYDtyWrmcEheVlp2ryzNmONFGRa1hA/viewform


Link to HS Covid-19 podcast:


http://learnskin.libsyn.com/


Please take time and go through the important information below and helpful tips. Check out CDC.gov.coronavirus for more information about Covid-19.


FAQ about HS and Covid-19:


https://www.hs-foundation.org/hidradenitis-suppurativa-treatment-and-covid-19-coronavirus/


COVID-19 CDC Frequently Asked Questions:


https://www.cdc.gov/coronavirus/2019-ncov/faq.html


COVID-19 FDA Frequently Asked Questions:


http://www.fda.gov/emergency-preparedness-and-response/mcm-issues/coronavirus-disease-2019-covid-19-frequently-asked-questions


CDC Info:


https://www.cdc.gov/coronavirus/2019-ncov/about/prevention-treatment.html


World Health Organization (WHO) info:


https://www.who.int/emergencies/diseases/novel-coronavirus-2019


Coronavirus COVID-19 NHS (UK) Guidelines:


https://www.guysandstthomas.nhs.uk/our-services/dermatology/dermatology-and-coronavirus-frequently-asked-questions.aspx#na


10 Reasons Not to Panic: Putting things in perspective just to help you stay focused during this difficult time:


https://www.weforum.org/agenda/2020/03/coronavirus-ten-reasons-not-to-panic


Understanding cancelled events and why it helps:


https://www.vox.com/2020/3/10/21171481/coronavirus-us-cases-quarantine-cancellation


More helpful info:


Backup Research:


http/ws:/ww.jaad.org/article/S0190-9622(21)02217-9/fulltext


https://www.lifeextension.com/protocols/infections/2019-novel-coronavirus-sars-cov2-covid-19?utm_source=facebook&utm_medium=social&utm_campaign=organicpost


No Evidence to Back COVID-19 Ibuprofen Concerns

Note: Always speak to your doctor about what's best for you.


https://www.factcheck.org/2020/03/no-evidence-to-back-covid-19-ibuprofen-concerns/?utm_source=facebook&utm_medium=social&utm_campaign=social-pug


For those concerned who has someone in their household who is an essential worker. And feels that everybody is at risk in household. This not necessarily the case, please don't bring any more worry upon yourself than necessary.


You can still follow CDC guidelines as far how to wash and how to keep things sanitized. And practice social distancing within your household. Yes even with kids.


As long as everybody else within the home is self quarantine. Even if you do have to run out for something essential. Just practice your social distancing while you're out there. Your main "focus" is the essential worker. But there are plenty things you can do to stay safe and lower your risks.


Social distancing within your home:


•Have the person who has been exposed to the outside world. Remove their outer clothing before entering the main part of the home. I.E. shoes, hat, coat. and put their work clothes immediately in the laundry. *Laundry that they should do.


•Have them or you (if you're not sure they did it), sanitize anything they have touched prior to them taking a shower. This includes their cell phones, a laptop, keys, ECT.


•No sharing; things like towels, cups, utensils, toothbrushes, ECT


•Staying at least 6 feet away "The essential worker". Just as you would do in public.


•No hugging, kissing, or intimacy.


•You can also choose to not sleep in the same bed.


•Everyone should continue to practice safety hygiene in terms of; sneezing and coughing in the inside (elbow) part of their arm.


•Washing your hands frequently, this includes your entire family.


•Not touching your face.


•Keep surfaces cleaned frequently. If you receive any outside packages, wipe them down, dispose of when done. And also wash your hands after handling.


•Depending on your family size, or how many essential workers. Have a discussion about how you would divide up the living space.


This is temporary; you can do this!


Things To Do While Stuck At Home During The Coronavirus (COVID-19) Quarantine - Self Isolation.


Read a book or magazine.


Start a journal or blog.


Self reflect, take this time to write down things you're grateful for. maybe take this time to really work on yourself.


Write actual letters to family and friends. And then maybe, write thank-you notes to service people who you remember went out of their way for you during this time.


Reconnect with nature; sit outside, listen to the birds breathe in the air. Take a walk or hike.


Reconnect with your family or your significant other. Have special family time or dinners. Or have a special in home date night.


Meditate or take this time to learn how to meditate.


Write poetry or a song.


Learn a new language.


Study sign language.


Watch all the really long movies you’ve avoided until now.

Go through your old photos and organize them. Both paper copies and virtual.


Complete a puzzle or a crossword puzzle.


Play improvisation or board games.


Knit, crochet, do crafts, draw, color, or paint.


Look at pictures or online videos of puppies or kittens.


Watch all the movies you’ve avoided until now. Or binge-watch anything you've been wanting to catch up on.


Organize your tupperware, spices, pots and pans, junk drawer, makeup, or office ECT.


Maybe fix that broken drawer, door knob, loose tile or clean scuffed up walls or floors.


Bake or try new recipes.


Catch up with old Friends. Use Skype, FaceTime, Google Hangouts/DUO, Facebook videos and keep in touch with friends and family.


Do an indoor scavenger hunt. Or see if your neighborhood community is interested in doing a stuffed animal zoo window hunt.

*Fun neighborhood idea for all. Stuffed animal zoo hunt. Have the neighbors put stuffed animals in their windows. So when people go for a walk, they can check off all the animals they find! Remember to practice social distancing whilst doing this.


Make signs with positive words and happy pictures on them and hang them in your windows to cheer up the neighborhood.


Dye your hair a new color. Why not?!


Learn some history. Learn some science.


Work on your financial planning, maybe look into financing your loan or ways to save more money.


Catch up on your sleep!


Make a current affair time capsule. Capture everything that's going on right now. Put news clippings in it, your thoughts, anything you can think of during this time. And bury or hide it.


Link resource, 125 ideas of fun things to do with kids:


https://parade.com/1009774/stephanieosmanski/things-to-do-with-kids-during-coronavirus-quarantine/


12 Virtual Disneyland Rides That You Can Enjoy Via YouTube At Home


https://www.elitedaily.com/p/12-virtual-disneyland-rides-that-you-can-enjoy-at-home-without-a-fastpass-22644016?utm_term=share


8 BEST WEBSITES OR APPS TO SUPPORT STUDYING ONLINE:


https://whatsnewindonesia.com/best-websites-or-apps-to-support-studying-online/


If you're able, please don't forget to support your local establishments, especially small businesses.


Covid-19 (Coronavirus): Immunosuppressive treatments in dermatology


https://www.skinhealthinfo.org.uk/covid-19-coronavirus-immunosuppressive-treatments


UPDATED INFO FROM THE FDA DIRECTLY AS OF 3/24/20:


Thank you for writing to the Division of Drug Information in the FDA's Center for Drug Evaluation and Research (CDER).


We are so sorry to learn that you have not been able to find the information you are looking for, and we appreciate that you chose to share your concerns with us. We offer the following comments for your consideration.


You and other members of the support group may wish to review the prescribing information for the medication you/they are currently taking. For your convenience, here is the prescribing information for Humira (adalimumab) and for Remicade (infliximab).


Humira PDF Google Link:


https://drive.google.com/file/d/1qF49_Vat0EyETvLHz5CpZbcee9Uvz_Rg/view?usp=drivesdk


Remicade PDF Google link:


https://drive.google.com/file/d/1Pre1ZTvKAXDXtFSlgZKkA_-lZYrdmnv5/view?usp=drivesdk


In addition, the Centers for Disease Control and Prevention (CDC) maintains a COVID-19 FAQ webpage, https://www.cdc.gov/coronavirus/2019-ncov/faq.htmlwhich includes information related to who is at “higher risk”: CDC Higher Risk https://www.cdc.gov/coronavirus/2019-ncov/faq.html.


Patients should speak with their health care provider who is familiar with the individuals’ current health status and past medical history. Please encourage members of the support group to discuss questions or concerns with their health care provider who can provide advice and care appropriate for their specific medical needs.


Best Regards,

KC

Pharmacist

Division of Drug Information

Center for Drug Evaluation and Research

Tel: 855-543-DRUG (855-543-3784)

druginfo@fda.hhs.gov


We understand this is very trying time for everybody. Mentally, emotionally, financially, and of course everything, for many, we've had to deal with previously, physically. I know surgeries have been postponed indefinitely. I know mine have. We know some people are having a hard time getting their medications on time. Medical appointments have been postponed indefinitely. Note* for medical appointments, please speak to your doctor's about telehealth or videohealth. During covid-19 most insurance companies are covering this service.


So many are not able to work. Kids are not able to go to school and are off schedule and out of routine.


If you need a mental health therapist, also speak to them about telehealth and or video sessions. Make sure you utilize any of your support systems at this time. Don't forget FaceTime or via phone.


Check into ALL the services you're country or state maybe offering as far as any financial assistance.


One thing we ask that you keep in mind. Is that you're not alone. We are all in this together, globally.


*Important*

For those who are not used to this. The long-term isolation, being alone, the dramatic very quick change in your lives. Trying to adjust the new normal. If you know someone in your life that suffers with a chronic illness. Preferably, someone that had to stop working, who had to stay home isolated a lot, maybe housebound or bed-bound whatever the scenario. Take this opportunity and reach out to that person! I know for a fact they would be more than willing to be a sounding board during this time. Let them help you through this. We know what this is like, we understand on a level that is impossible to even explain. If you are struggling (and I know a lot of you are because I'm seeing it). Let us help you.


This is an awareness article for educational purposes only and is not intended to replace the advice of your doctor or other health care provider.


Hsconnect.org


Written by Denise Panter-Fixsen

Edited by Brindley Kons

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