From PSC Partners Seeking a Cure webcast of the same name January 2021.(mostly)

I have written and reviewed this blog so many times – each time receiving new updates. Originally from a PSC Partners seek a Cure webcast delivered in January this year, but we have had local input since then, and of course other concerns about safety that I will not address in this except to say evidence is still supporting the ongoing rollout, but do encourage you to read on this and talk with your doctors. I would like to preface this by saying we are in a very different space to the US where this talk was delivered and so our target does have some differences, but many principles can  still be applied. And  I gratefully acknowledge PSC Partners Seeking a Cure, along with Dr Christopher Bowlus, Dr Josh Korzenik and Dr George Rutherford for sharing some insights. 

Please of course remember this is merely me summarising a video – and I encourage each of you to delve further by either watching the video presentation itself, further researching or talking with your specialist.

The SARS-COV-2 virus has created a worldwide pandemic – no one has been left un-impacted. That familiar picture shows the model of the virus with it’s spike proteins on the surface. Those mean looking spikes are exactly what the vaccine are targeting. But more on that later. 

Some things we have learnt about Covid 19 is that 95% of transmission is via droplets and aerosol.  Dr Rutherford shared the familiar picture of two people standing face to face – one with no masks, one where on person wears a mask and one with both people wearing a mask.  If in doubt – wear a mask.  We are also seeing, on the whole in such a changing landscape, a variety of statistics that help us in our understanding of this disease.  It’s thought 47% of people with Covid 19 are asymptomatic – that means they’re well!  30% have mild symptoms, 15% have moderate symptoms (some of these people may need hospital admission), 10% have severe disease requiring admission to hospital and possible ICU care, and 5% are critical, requiring ICU care to manage their multi organ failure. Of the last two categories, not all will make it through.

An interesting picture/graph was presented, depicting as respiratory effects of Covid worsened to a peak, a correlating multi-organ failure began to emerge to be managed even as the respiratory illness itself reduced.  Different forms of medications are required in these different stages, and unsurprisingly in the later inflammatory stages it is in fact some of the immunomodulating drugs some of you will be familiar with, were the most beneficial.  In fact, some Anti-TNF medications such as Adalimumab (eg. Humira) and Infliximab (eg. Remicade) are even being looked at as helpful parts of the total treatment regime. Reinforcing the big take home message – don’t stop taking your meds. You’re risk of complications is greater if you have a serious IBD flare!

And it is not just death, but the long and far-reaching implications of Covid that are wreaking havoc in people’s lives – cardiac, pulmonary, neurological and even emotional issues taking their toll long after the infection passes.

There is still little evidence of cases of those with PSC and Covid – thankfully! – but what we do now is that those with cirrhosis do fair more poorly.  A good proportion of patients go on to a decompensated disease state, with many of them sadly not being able to pull though.  For the many with PSC who have not yet progressed to cirrhosis the story is generally much better.

Now to the vaccines – Dr Rutherford briefly mentioned and explained the various types of vaccines. He then pinpointed that both the Pfizer-BioNTech and Moderna vaccines operate using mRNA technology. This type of vaccine uses RNA to essentially trick the body into making it’s own antibodies against a virus.  The RNA does not penetrate our cell’s nucleus, so has no ability to disrupt our own DNA, and in fact, the RNA component is quickly degraded in our bodies, but not before allowing our own immune system to build a response that will fight any Covid 19 infection, including any currently known variants.    This is because that big ugly spike still looks basically the same – and that is what the vaccine is operating on. The very minor changes seen so far are not enough to render the vaccine ineffective. If the virus does change to a degree that the vaccine is no longer effective, the type of technology used is also very adjustable and the vaccine should be able to be modified quickly to keep up.

Of course the question of side effects was also asked. The Pfizer vaccine is being seen to be mostly very well tolerated on it’s first dose, with common post vaccine side effects, such as soreness or swelling at the site of injection and  mild cold and flu like symptoms, being experienced after the 2nd dose.  There was a recommendation if you have had previous severe allergic reactions to any medications you would be best to have your vaccine in a medical setting and be monitored for 30 minutes to ensure prompt response in the still unlikely event that you have an allergic reaction to the vaccine. 

Important to also remember is that there are still other vaccines being developed and in trial stages.  The general consensus was, if you have access to a current vaccine, grab the opportunity.  Some extra caution and information on further vaccines will be warranted.  The Oxford – Astra Zeneca vaccine does use a different pathway to immunity; however, this too is being highly scrutinised and will be subject to all standard trial protocols. Our Therapeutic Goods Administration (TGA) holds the approval rights here in Australia and operate under some of the most stringent guidelines in the world. 

So who should have the vaccine and what special considerations may we need to consider?  Well, with our TGA approval it has also been announced the rollout of who will receive the vaccine first.  For most in this group you will fall under the Phase 1B stage of the rollout – being that you have a chronic condition.  The eligibility checker can be found by going to this link. Some of you may qualify for 1A on different basis. 

Many of you will be on an immunosuppressant or immunomodulator.   The concern here is not so much about if you will have a worse reaction, but if your body will mount the response towards immunity that is expected.  Those on Methotrexate, Rituximab and Prednisolone, were mentioned as  holding the greatest risk of not creating the required immunity and it is especially important to talk with your doctor about the timing of your injection to maximise it’s effects.  The Gastroenterological Society of Australia ( have identified Rituximab and Prednisolone doses greater than 10mg/day as triggers to check with your specialist about the timing of your covid vaccine.  You should also consider if your disease is in a current flare – again, discuss with your doctor as induvial risk vs benefit equations need to be considered. 

There are still trials on the vaccine occurring in children and your paediatric physicians will be the best ones to keep in touch with around this. 

There are still unanswered questions on what life will look like post vaccine – the research thus far has moved more swiftly than we normally see, so we need to trust that this research is ongoing and our doctors are doing all they can to keep up with the latest data and information.  You will still need to comply with Covid rules for a long time yet.  Masks remain recommended in certain settings, and of course for some places, mandatory.  Research to determine how long immunity lasts and if indeed the immunisation is producing a neutralising antibody against the virus as well as looking at the levels/titres in the system at various time points is all occurring.   This is an evolving space – but all three doctors agree, if you are offered the immunisation, accept it.