04 December 2020
'Psoriasis, COVID-19 and Me' Webinar
Catch up on our first webinar event in collaboration with St John's Derm Academy.
On Wednesday 4th November we held a successful first online psoriasis patient and public involvement event in collaboration with St John's Derm Academy. The live webinar, 'Psoriasis, COVID-19 and Me' attracted over 160 attendees on the night, to watch informative talks about the impact of the pandemic on people who are living with psoriasis. Watch the video below.
Highlights included:
- An introduction from world-leading psoriasis expert and Consultant Dermatologist, Professor Jonathan Barker
- A presentation from our Chief Executive, Helen McAteer, about some of the challenges of living with psoriasis during the pandemic, as well as challenges that we have faced here at the Psoriasis Association. (5:11)
- The latest insights from the PsoProtect and PsoProtectMe registries as presented by Consultant Dermatologists Professor Catherine Smith and Dr Satveer Mahil. You can read more about this here. (26:08)
- A Q&A session hosted by Dermatology Consultant Nurse and Psoriasis Association trustee, Karina Jackson, in which attendees submitted their questions about psoriasis and COVID-19 to an expert panel featuring Professor Jonathan Barker, Helen McAteer, Professor Catherine Smith, Dr Satveer Mahil and Nurse Consultant in inflammatory skin disease, Lucy Moorhead. (55.42)
We are extremely grateful to everyone who attended on the night, as well as the expert presenters and panel for giving up their time to present and answer questions.
Additional Questions Asked During the Webinar
Not all questions asked during the Q&A session were able to be answered during the webinar due to time constraints. Below our experts have kindly answered the remaining questions submitted on the night, however please keep in mind that these answers were relevant as of the 4th November. For the most up to date information on any of the subjects raised here please visit our COVID-19 hub.
I
previously had to shield due to taking cosentyx. Does today’s news mean I have
to shield again?
If you are on a biologic
medicine (Cosentyx) for psoriasis and have other medical risk factors such as
age over 70 years, diabetes mellitus, pregnancy, any pre-existing lung disease
(e.g. severe asthma treated with biologic agents or maintenance oral
corticosteroids), adults on dialysis or chronic kidney disease (with stage 5),
any history of ischaemic heart disease or hypertension on treatment, adults
with Down’s syndrome, and other severe health condition listed on the
government website or other factor deemed to be risk factors by the
supervising doctor you will be in the clinically extremely vulnerable (CEV)
group and will be advised to shield until 2.12.20 if you live in England.
I'm a methotrexate patient
and at no point was I told to shield.
Should I have been?
If you are on a
methotrexate medicine for psoriasis and have no other medical risk factors as
listed above you will not be in the clinically extremely vulnerable (CEV) group
and will not need to shield.
I have nail psoriasis
and I’m on methotrexate I was never told to shield in lockdown 1. I work in a
school, so will it be the same for lockdown 2 or any subsequent regional
lockdowns?
If
you are on a methotrexate medicine for psoriasis and have no other medical risk
factors as listed above you will not be in the clinically extremely vulnerable
(CEV) group and will not need to shield.
My treatment
has changed since Lockdown 1. I am now
on a biologic. Do I need to shield?
It is not surprising
there are so many questions about shielding as it can be confusing who needs to
do this and advice has changed over time and may continue to change. When Covid first became a major public health
concern in the UK the professional body for UK dermatologists (The British
Association of Dermatologists) was asked to provide advice on which patients
attending hospital dermatology services might be at increased risk of severe
outcome from a Covid infection. The criteria devised were then used by hospital
departments to help identify patients who might be advised to shield (stay at
home).
Some medicines alone e.g.
infliximab or two medicines in combination (e.g. ciclosporin and methotrexate)
are felt to confer a very high risk for people and this is the group of people
who would have been advised to shield then, and again now in England (until
2.12.2020). Additionally people on one medicine but who also have other medical
conditions felt to be more risky might have been advised to shield. More information on this can be found on the Psoriasis Association COVID-19 information hub or the government website.
I take metoject
and Etanercept and was previously shielding, I'm in Scotland and there is no
shielding in place any longer. Is it still wise to be cautious?
Yes,
it is very wise to be cautious. Scotland
currently has a system of local COVID protection levels (tiers)
in place. Each local area has a COVID protection level and each level has its own specific guidance on
shielding. There are 5 different levels, from 0 to 4.
In Wales we
have been advised there is no shielding but I have received a letter with
advice.
This
is correct.
No shielding as such is recommended in Wales but support is available through
your local council if help is required. The
Welsh Government have a record of everyone on the shielding patients
list in case they should need to ask anyone to shield again in
future. If shielding does become necessary once again, the Chief Medical
Officer for Wales will write to you.
Where can
people with psoriasis, purchase nitrile gloves, pillow cases, head cloths and
other cotton fabrics after using emollients and ointments? I have tried
chemists and pharmacies but they don't know where.
The items you list are
very useful when using topical therapies at home to treat your psoriasis to try
to prevent the treatment coming off your skin and onto furnishings. As they are
not medical devices or medicines they are not available on prescription and
need to be purchased independently. Finding them might be easiest online by
using the terms such ‘nitrile gloves’ or ‘shower cap’ in the search engine.
As a
frontline healthcare worker, I have definitely seen a worsening in my psoriasis
lately to the worst it's ever been. I am unsure whether this is due to
increased stress, frequency in hand washing/bathing or both.
We are sorry to hear your
psoriasis has been flaring up recently. Emotional stress can certainly drive a
flare of psoriasis. And as a healthcare worker you will be undoubtedly washing
your hands and using hand gel very frequently. Your occupational health
department may be able to provide some support and guidance on this if your
skin is becoming excessively dry and sore.
There are also various
resources available to help relaxation and cope with stress including
a relaxation podcast from the imparts project and resources from the Psoriasis Association.
I had COVID
in early March when on methotrexate treatment. Should those taking DMARDs
consider taking a COVID vaccine if/when this becomes an option?
People receiving drugs that affect the immune
system (such as methotrexate) are not able to receive live vaccines, however
most of the vaccines in development for COVID-19 are non-live vaccines. Non-live
vaccines can generally be given safely to people receiving drugs that affect
the immune system (such as methotrexate), however further study is required to
understand how well the vaccines work in the context of these medications.
COVID-19 vaccines are currently being tested in
late phase clinical trials to make sure they are effective and safe to use.
Once the vaccines have been fully tested, public health guidelines will then inform
us which vaccines should be delivered in the population, to whom, when and how
often. For example, vaccinating those at highest risk of severe COVID-19
infection may be prioritised.
Should I take the flu
vaccine when on a biologic medicine?
An
annual flu vaccine injection is recommended in all people receiving biologic
drugs for psoriasis (such as Stelara). The flu vaccine is changed each year to
provide protection again the flu viruses most likely to cause infection that
year.
Since
the flu vaccine is not live, it is safe to use in people receiving biologic
drugs. We know that it provides people receiving drugs that affect the immune
system (such as biologics) adequate protection against flu infection (although
studies show that the response to the vaccine is usually slightly lower than in
the general population).
There
are no recommendations on the particular timing of the flu vaccine in relation
to the timing of biologic injections. The flu vaccine is however recommended
each Autumn, just before flu season begins.
I only found
out about the PsoProtectMe survey through social media. I imagine the response would
be more diverse if primary and secondary healthcare providers were able to
promote the survey to their patients with psoriasis.
This
is a great suggestion. We are actively working with healthcare providers to try
to encourage them to promote the survey to their patients. We hope this will
help us to increase the reach of the PsoProtectMe survey to a more diverse population and to ensure that the
results of the survey are more representative of the global population of
people with psoriasis.
Are there currently any
available insights into 'long covid' and psoriasis patients?
No.
We currently do not yet have data on ‘long COVID’ in psoriasis. We are hoping to
return to the healthcare professionals who have reported patients with COVID-19
to PsoProtect, and patients who have shared their experiences of COVID-19
through PsoProtectMe and ask
them to provide information on the long term effects of the infection. We hope that
we can use this extra information to better understand the impact of this
debilitating illness in people with psoriasis.
I'm a 47 year old
male who has had psoriasis since I was 16. It has been under control since my early
30s, but I can still suffer on my scalp and mildly on the genitals, which can
cause discomfort and embarrassment. Is that common to only be affected in those
areas and what are recommendations?
We are sorry to hear that.
Psoriasis is common in both areas.
Our recommendations would be to see your GP to confirm the diagnosis and
then ask them to prescribe treatment in the first instance as you will not be
able to obtain products over the counter.
For scalp psoriasis, you often need to use a combination of
treatments at the same time for the best result. For instance, if you have a lot of scale then
you need to apply a de-scaler and then a steroid product whilst washing with a
medicated shampoo. This can be hard to do by yourself but this video may
help give you some tips and this information sheet may provide further information.
Genital psoriasis is often best treated with a topical steroid
that includes some additional ingredients such as anti fungals and/or anti
bacterials as this area can be prone to infection. Treatments will need to be prescribed by a
GP. This information sheet may
provide further information.
Finally please don’t ever be embarrassed to discuss or mention
any issues you are having with your groin when you attend appointments with
health care professionals even if they don’t ask. We are very used to treating psoriasis in all
areas of the body! If an examination is
required we will do our utmost to take into account all issues pertaining to
privacy and dignity and you should be offered a chaperone.
I have just
started using a topical ointment after coming off my steroid cream which I had
used for 5 years. As a result of Covid I have only been able to have a
telephone appointment with my doctor. I have been on a waiting list to see my
dermatologist since February. I’ve been using the topical ointment dovonex for
a week now and am worried that my skin will start relying on it. What is your advice
on taking topical ointments and does it cause long term issues?
Sorry to hear you have been waiting so long for an
appointment. I would recommend calling
the team you have been referred to and, if possible, asking if you can be
considered for any cancellation appointments and confirming when you can
anticipate being seen. If you are still
not likely to be seen any time soon, I would ask if there is a GP with an
extended role in dermatology who can advise you in the interim.
Topical preparations, if used as prescribed, should not cause
long term issues. Dovonex ointment is
derived from vitamin D and should not be used in quantities of more that 100g a
week as it can then interfere with your body’s absorption of vitamin D. You should also avoid the face and sensitive
areas. It is recommended that in order
to optimise results a bland moisturiser (emollient) should be applied at least
30 minutes prior to the Dovonex application.
This information sheet may provide more useful information.
I’ve had an
anaphylactic reaction in the past to Infliximab. What is the difference between fully human vs humanised
biologics? Is there any greater risk with humanised?
Infliximab is an antibody that binds to and neutralises the
effects of TNF alpha. Infliximab was originally
developed in mice, as a mouse antibody. However, because humans have immune reactions
to mouse proteins, the mouse common domains were replaced with similar human
antibody domains. Infliximab is a chimeric antibody, which means it is a combination of mouse and human antibody amino acid sequences.
Humanized antibodies are
antibodies from non-human species (e.g. a mouse) whose protein sequences have
been modified to increase their similarity to antibody variants produced
naturally in humans. Some humanized and even fully
human sequence-derived antibody molecules still carry risk of a
hypersensitivity reaction, but they carry a much lower risk for inducing immune
responses in humans than mouse or chimeric antibodies.
If you are concerned about your risk of a
hypersensitivity reaction with other biologics, I would strongly recommend you
discuss this with the dermatology team caring for you.
If one of the
problems with COVID-19 is the inflammation cascade, suppressed by dexamethasone,
would dexamethasone be a useful treatment for Psoriasis, which is an inflammation problem?
Dexamethasone is a steroid. It has been used in the
past for psoriasis, but it is not a good long-term treatment for
psoriasis as it can lead to other complications such as weight gain,
indigestion, sleep problems, mood changes, glaucoma, osteoporosis, high blood
pressure and diabetes.
We also see a ‘rebound phenomenon’ with steroids
after they are stopped or withdrawn in psoriasis. Essentially this means that
your psoriasis can worsen once steroids are suddenly stopped. This is why we
only tend to use topical steroids on the skin in psoriasis where this
phenomenon is not such an issue.
Dexamethasone is sometimes used in a specific phase
of illness with COVID-19. It is not used in the early phases of infection where
the virus is thought to be replicating. Instead, it is used in the later phases
of the illness in severely unwell patients who have developed a
hyperinflammatory syndrome to the virus.
Please could
you provide guidance on concerns to look out for that occur as a result of
psoriasis in teenagers. My daughter is 13 and she can get back ache, sees black
spots and experiences dizziness in the morning.
People with psoriasis have a greater chance of getting psoriatic arthritis.
This is an inflammatory type of arthritis which is more common in patients with
severe psoriasis on the skin. The condition
is most common in adults ages 30 to 50, but it can start in childhood.
There are a number of
different types of psoriatic arthritis, but it typically causes pain, swelling
and stiffness in the joints. It can affect joint in the body, but it often
affects the knees, ankles, hands and feet. It can cause stiffness of the back
too. This pain and stiffness is worse in the mornings and wears off throughout
the course of the day. The pain and stiffness also tends to ease with exercise.
It is unclear if the
backache your daughter is experiencing is psoriatic arthritis or not and there
may be other causes for her symptoms. If you are concerned about the back ache and
other symptoms your daughter is experiencing, then we would suggest discussing
this with the healthcare team looking after her.
Feedback From the Webinar...
- 'A huge thanks to @PsoriasisUK and @Stj_DermAcademy @PsoProtect for a really informative and useful webinar this evening. Hope there will be more in the future!'
- 'Brilliantly informative webinar this evening. Thank you so much for all your efforts put into making it so beneficial to those of us living with psoriasis at such a difficult time.'
- 'Thank you so much for such an important and informative webinar.'
- 'Very useful information. Thank you to the panel.'