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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 2020 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 2020. 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.'

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