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PSC/COVID-19 Webinar

Professor Gideon Hirschfield, Dr. Joshua Korzenik and Dr. Jerome Schofferman

PSC/IBD COVID19 webinar

A webinar ran on 19 March 2020 by PSC Partners Seeking and Cure in Canada with experts Professor Hirschfield, Dr. Joshua Korzenik and Dr. Jerome Schofferman talking about COVID-19.

They covered PSC, IBD and psychological issues in relation to COVID-19. Check it out!

Thank you to PSC Partners for running this excellent webinar for patients!

Basic notes from the webinar

(These notes are meant to support viewing of the video. Please don't change anything about your own medical regime without first checking with your own doctor)

Gideon Hirschfield (GH)

  • COVID19 is a new virus that is readily spread, and part of a family of viruses that cause colds and pneumonias.
  • We don’t have any immunity to it but there will be a vaccine. This could take 12-18 months.
  • The majority of those exposed to COVID19 will get some kind of illness because it is the first time our immune system has interacted with the virus.
  • Even if ⅔ of the world gets the virus, the majority will be completely fine, with no significant consequences. However, some people, e.g. those who are old (>65/70) can be particularly prone because of other illnesses (e.g. heart disease, smoking etc) and they may be more susceptible to secondary inflammation and infections.
  • Doctors know how to look after these patients, as they do it every year with flu etc but the challenge is that there are only so many patients doctors can look after every day.
So what can we do to reduce the numbers they need to look after?
  • We need to follow social distancing and hygiene guidance. A better term is physical distancing - we don’t need to be socially isolated.
  • This will slow the spread, and slow the numbers coming into hospital at any one time.
If you live with PSC
  • GH does not think you are more likely to get the virus if you have PSC
  • GH thinks you should do social distancing and hygiene seriously.
If you are on immunosuppressants following a transplant or have AIH (13mins in)
Experience from Italy tells us that they have not seen more patients with liver disease getting COVID-19
GH says that the advice about extra social distancing measures etc for people with cirrhosis, who are on immunosuppressants etc is about being cautious, and not because there is data suggests that you do worse.
  • Do not stop taking your meds. This may make you sick. Now is the time to stay away from doctors, and A&E (unless you are breathless). Better to do everything by phone. Do not put yourself at risk because you go to hospital unnecessarily.
  • GH says contact your specialist if you do get a fever

If you are on a clinical trial

  • Pharmaceutical companies are doing everything they can to convert the planned study visits into virtual visits. May deliver meds by taxi, do blood draws from home etc
  • Trials may not recruit new patients for now but those on study drugs should not worry as they will continue to be looked after.
  • There may be short term disruption while the plans get into place.
  • Do not make changes to your treatment and be in touch with your research study team to get the latest advice.

Dr. Joshua Korzenik

  • JK says as many as 45% of people who have coronavirus get diarrhoea
  • **If you have IBD, do not make any adjustments to your medication regime**
  • JK says IBD itself does not increase the risk of developing coronavirus but the medications might, but stopping those meds might result in a flare, which then increases your risk of coronavirus because you have to go to hospital. Remember, we need to try to stay out of hospital.
  • Mesalazine meds are not immunosuppressants and JK is not worried about those at all.
  • Some IBD drugs are immunosuppressants (22mins) (eg anti-TNF agents such as Humira, remicade, adalimumab, infliximab). JK says they don’t know much about how they interact with coronavirus, and they are not recommending that anyone changes or alters their dose.
  • Some people are on azathioprine, mercaptopurine, tofacitinib. These drugs impair the body’s ability to handle viruses. JK is not recommending that anyone stops taking these. In a very select group of people (the very very stable), JK is reducing the dose temporarily.
  • Steroids (eg Prednisolone): wants to limit their use where possible. Not everyone can though and these people should take extra precautions to avoid getting the virus.
  • Routine appointments and tests - many colonoscopies and blood tests are being deferred for the time being, to keep people away from hospitals.

Dr. Jerome Schofferman

Epidemic psychology

  • Important to only look at respected sources of information. - Be careful of ‘fake’ or ‘polarised’ news.
  • If you think you are doing enough, you are probably not doing enough. If you think you are doing too much, you are probably doing the right amount.
  • Four types of people and their responses:
    • People who are in denial - not social distancing at all
    • People who are data driven - understand the threat intellectually and take it seriously
    • People who are the feeling type - have an emotional response
    • People with severe anxiety - they are paralysed with fear or go into overdrive and do everything they possibly can (hypervigilant)
  • People who are social isolation need to find new ways to socialise [eg PSC Support's Daily Drop Ins!]
  • People need to do exercise. OK to go for a walk but keep your distance.
  • Start a schedule to plan your day.
  • Do things you’ve been putting off
  • Do meditation or something faith based to help anxiety
  • Do things for yourself eg hand washing
  • Don’t look at the news all day
  • Know this there an end to this

Q&A section

Q Will people with PSC or who are post transplant have any different symptoms to fever, cough or shortness of breath? What would be a red alert?
A GH We are starting to see more GI symptoms, so people are not clear whether their IBD is playing up or if it is a viral illness.
Doctors are looking for the symptoms as per national guidance - looking for fever, cough, sore throat and myalgia. Follow national guidance if you get those symptoms. Breathlessness is a real concern, collapse, weakness and confusion.
For post transplant patients, they might be more worried, but actually one of the aspects of severe COVID pneumonia is that it involves a massive inflammatory response (42m). Some of the treatments used successfully in China were anti inflammatory drugs, so it might be that being on immunosuppressants is slightly protective. (Don’t know this for sure, but might be reassuring for now). It is much more complicated than we think.
Q Is it safe to get take out (take aways) or delivery, or eat out in restaurants? Are fruit and veg from a market safe?
A JK - keep it simple and stay away from people, so avoid restaurants, avoid where there are people. The virus may live longer on surfaces than we think. He would avoid eating out or takeouts. Carefully wash or peel foods. You might want to avoid foods you can’t wash properly. Better to be cautious.
A GH If you do choose to have takeout, use places you’ve used before. Don’t try new ones and risk getting an IBD flare
A JS Markets might have more crowns and more people touching and feeling the products. Be careful.
Q People with PSC can’t sleep. What can we do?
A JS Try meditation, look up sleep hygiene, nap in day, relaxation, breathing exercising.
A GH Turn off your phone!
Q Does COVID19 increase inflammation in bile ducts and colon?
A GH - we don’t know much. We know that some patients get diarrhoea but we don’t know the mechanism of that. A certain percentage of patients with severe COVID do have abnormal liver tests. We know there is evidence of the virus in the liver but GH doesn't think it is damaging the liver per se. A liver response is common when patients are sick anyway and they almost never do anything as it is almost always a marker that they were systemically sick. GH doesn’t think it directly affects the bile ducts. If someone with PSC does get COVID, they should make sure they stay well hydrated. Being dehydrated doesn’t help the bile flow or the colon. There are experimental treatments, and GH doesn’t believe having liver disease is a reason not to receive one of those treatments. We don’t know if those treatments work yet as they are research)
A JS: there are several unproven remedies that have been recommended...
Q Should people with PSC remove their children from school?
A JK Yes he would. Be proactive about social distancing.
Q How do i talk to children and reduce their anxiety?
A JS Depends on child’s understanding. Reassure that child won’t die and nor will parents but honesty is important.

Final comments

JK warmer weather will not impact COVID19 spread. Social distancing will.
JK looking at data, swabs etc, the risk of mortality could be a lot lower than we think.
JK 40 or 50 compounds being tested as treatments and vaccines are being developed.
GH Protect yourself and protect the system. If we don’t protect the system, it won’t be there to protect you. The system can protect you: it does have the know how, the doctors the nurses.
GH we are all anxious about this. Be nice! He believes that we will get through this.
JS Reach out to help others.
JS Learn something new.