In the last 24 hours some guidelines have been published by the Irish Society for Rheumatology (ISR) which offer advice additional advice (to the Stay at Home advice offered by the HSE) to patients on immunosuppressive therapies.
Because patients who are on treatments which suppress their immune systems are at higher risk than others, additional restrictions have been recommended to keep them safe.
Firstly, the guidelines help identify the medications which put patients at risk (see the blue box at the bottom of the graphic).
This list includes standard immunosuppressive therapies, biologic medications, and steroid medications.
High Risk Group
The guidelines also help identify those who are, because of their age, underlying medical problem(s), or steroid intake at especially high risk.
It recommends that those at especially high risk Cocoon.
Examples of those in the very high risk category would be those over 70 yrs, those taking regular steroids (prednisolone / deltacortril), those with underlying heart or lung problems, high blood pressure, recurrent infections, or those with diabetes.
Increased Risk Group
Those on immunosuppressive treatments who do not fall into the high risk group still need to be careful. They still need follow the HSE stay at home guidelines, can exercise outside, but two additional recommendations are made; that they limit social contact, and that they do avoid shopping.
It is Cocooning advice but with an allowance for exercise.
The Government have identified certain categories of workers who are deemed essential, many of whom are keen to stay at work despite the fact that they are immunosuppressed. This is very challenging. Many of those who are in this category who are under my care, have been calling because they are either keen to remain at work, or anxious to remain at home.
My feeling on this is that those who are immunosuppressed should not be in any work environment where they could be exposed to someone with Corona Virus infection.
As there are so many who could be infected, even without symptoms of Corona Virus, any contact is a potential source of infection.
Anything other than staying at home is going to increase their risk. Home working seems to be the obvious solution where practical for most.
This is going to be an increasing problem for those working in healthcare over the among months. I’m not sure I have a simple solution for this – but expect that if you are on any of immunosuppressive treatments on this list – and you inform your employer (and you should), it is likely you will be sent home.
Updated safety information
Over the coming weeks, we will begin to get a sense of the impact of Corona Virus infection for rheumatology patients from an international research project which aims to define the risk more clearly. Until we know more, I would err on the side of caution.
Many of you attending the practice are on treatments that increase could your risk of infection and are appropriately trying to stay close to home. With social distancing and stay home advice, attending appointments in person can be difficult.
However those with arthritis and other related conditions, are all too aware that flare ups can occur at any time (especially at times of stress). People will remain unwell from their underlying conditions regardless of whether they develop a Corona virus infection. There are certain problems can wait, but others that require more urgent medical attention.
We are trying to offer a service that is both appropriate to acute medical needs of our patients but also one that is as safe as possible. We have therefore put a number of measures in place to allow us to continue to help our patients as safely as possible.
Firstly, this to reassure you that our office is still open. All of your team are available to answer your queries and concerns by phone or by email.
However, In addition to strict office staff adherence to the Health Protection Surveillance Centre (HSPC) guidance on social distancing and hygiene in the workplace, we have put in place a number of other measures to reduce the likelihood of Corona virus infection in our office.
These are to allow us to maintain essential medical services for our patients while ensuring the safety of our patients and staff.
Postponing Non Urgent Visits
Only patients with semi-urgent, urgent problems, or emergencies are being seen in person. All non-urgent appointments have been postponed or are being performed remotely using video consultations or phone visits. Each patients problems will be assessed in their own right but we will be erring on the side of caution where infection risk is concerned.
Video Consultations and Phone visits
All efforts are being made to carry out visits over internet based video consultations and phone to minimise unnecessary visits to the office. This in turn will reduce the number of patients attending the office in person and traffic through the waiting room area.
Minimising likelihood of exposure to Corona Virus infection for those who need to attend in person.
Suite 19 is in a part of the building separated from main hospital by a lobby and restaurant (which is currently restricted to staff). The Galway Clinic is not a designated receiving hospital for patients with Corona Virus infections and is not receiving visitors.
All patients who need to attend in person are pre-screened within 24 hours of attendance for common symptoms or risk factors of Corona Virus infection including; recent travel abroad, contacts with those infected (or suspected of being infected) with Corona Virus.
All patients screened again at main entrance of the hospital by Galway Clinic staff. Those with symptoms or risk factors will be asked to phone office and assessed by doctor before entering office.
The practice is following HSE / HSPC guidelines in relation to management of health care workers, and measures are in place to reduce the potential risk of spread of infection between members of staff and between staff the our patients.
Waiting room measures
- All those attending will be asked to wait in their car and will be contacted when it is time to come to office to reduce minimise spent in the waiting room.
- Appointments are also spaced appropriately to reduce congestion in the waiting room.
- All waiting room chairs are spaced 2 meters apart.
- All patients asked to clean hands on entry at reception with alcohol gel and on leaving.
- Protective screens have been put in place to limit contact between patients and staff in the office and all of non-essential paper work between patients and staff has ceased.
Doctors assessing patients will wear appropriate protective masks, gloves, aprons and goggles and maintain appropriate social distancing except where close physical examination or a procedure are required.
All relevant surfaces will be disinfected between patient visits
Appointment visit times will be kept to a minimum to reduce any potential exposure to infection.
These measures may change over the coming weeks so please check back here for further updates.
If you have any concerns of questions about your visit or these measures please email us on email@example.com
Version Created by Dr. Ronan Kavanagh March 30th 2020. Updated 2/4/2020
I have prepared some short videos which I hope address most questions that my patients might have about cocooning and who needs to do it.
The HSE guidelines relate to all patients who are immunosuppressed which includes many of you who are attending my practice.
For more detail check the HSE guidance for those at increased risk of serious Corona virus infection.
Most of those taking hydroxychloroquine (Plaquenil) for illnesses like rheumatoid arthritis or lupus, will be aware that the drug is in demand as a an experimental treatment for Corona virus infections.
As a result, some patients are finding it difficult to get timely supplies from their pharmacy.
Despite reassurance from the HSE that stocks are being managed to ensure supply, I have had a few calls from patients experiencing difficulty getting their medications.
If you are on Hydroxychloroquine and are unable to get your regular supply, here’s a few suggestions I have been making to my patients;
Phone around. Some pharmacies may stocks in place even if your regular pharmacy is having difficulty sourcing your medications.
Don’t panic. In the same way it can take some time for hydroxychloroquine to start working, it may also take some time to wear off. It takes approximately 40 days for the drug to clear completely from your system (although your symptoms may return before that). Manufacturing of this drug is being ramped up so it is my hope that additional supplies will become available soon.
A dose reduction can be considered. For patients who have some drug left, it may be possible to reduce the dose to delay the time it will take for your disease to flare. If you are a patient of mine and want to consider this, please ask before doing this.
If you get a flare of your arthritis / lupus. In the event that you are a patient of mine and develop a disease flare, please arrange an appointment. I am doing nearly all of my appointments using video consultations at the moment so should be able to help.
How to contact us. If you are an existing patient of mine, please contact my office on firstname.lastname@example.org (not entirely GDPR compliant but I’ll leave that up to you). The phones are rather busy at the moment – thanks for your patience.
This post should not be taken as medical advice and is for informational purposes only.
Having spoken to dozens of patients on the phone this week, and having spent more than a few sleepless nights myself, I am all too aware of the impact that this strange, strange time is having on all of us.
It can be particularly difficult for those with rheumatological conditions. Many of my more experienced patients will be all too aware of the impact that sleep disturbance and stress can have on their symptoms and their ability to cope.
Although I don’t have any easy solutions for this crisis here are few (non medical) things that you might find helpful;
Coping with Corona Virus: How to stay Calm and Protect your mental Health – A Psychological Toolkit by Professor Brendan Kelly.
“How worried should I be? What information can I trust? What should I tell the children? Can I survive the panic, let alone the virus?”. All these questions and more answered by Irish Psychiatrist, writer and master communicator, Brendan Kelly in this Kindle edition. It costs $1.14 (US store only at the moment). If you’re lying awake at night worrying and feeling bit overwhelmed this might be a good place to start.
Ten Percent Happier have a meditation app which I use from time to time. They have a free resource called Corona Virus Sanity which is worth a look. It includes a number of talks and meditations for relaxation for Corona virus induced anxiety. My favourite (!) is ‘How to Wash Your Hands and Meditate at the same time’. They have generously made their meditation app available to health care professionals for the duration of the pandemic. They also have a great podcast.
This is a wonderful new poetry podcast by Irish poet Pádraig O’Tuama which has become hugely popular since its timely launch in January. In each of his series of 8 minute podcasts, Pádraig reads a poem that has given him comfort, solace or meaning in his life. It includes poems about friendship, home, memory and love – from poets you may know, and from many you may not have heard of.
Here’s the link to the website but you’ll, be able to find it on all of the usual podcast platforms.
What resources would you recommend?
Update from HSE in a letter 24/3/20 to doctors and pharmacists about availability of Hydroxychloroquine supplies in Republic of Ireland.
“Hydroxychloroquine has been in use since 1955 and so has a proven record of relative safety. It has a very important role in the on-going management of rheumatoid and lupus conditions of many individuals.
We want to reassure you that
we are managing stocks to ensure these individuals will continue to have access to their regular medication in the normal manner.”
Hydroxychloroquine (also known as Plaquenil) is a commonly used drug in the treatment of rheumatoid arthritis and lupus and also used in the treatment of Malaria.
There have been a lot of news stories identifying it as a potential treatment for Corona Virus infection. I have recorded a few short videos summarising my thoughts on this for patients under my care.
These are for informational purposes only and should not be considered medical advice.
There has been some reports in the international media (and some hoax messages on social media circulating in Ireland) suggesting that anti-inflammatory medications may increase the risk of severe Corona virus infection.
My advice to patients of mine is that there is no reason to stop anti-inflammatory medications at this time unless you have had side effects, or have been told stop them for any reason by your own GP or other doctor.
Additionally, the Chief Medical Office of the HSE Dr. Colm Henry advises:
“Only take one anti-inflammatory medication at a time. It is okay to take paracetamol and an anti-inflammatory like ibuprofen at the same time. There is no evidence to stop any medication at this time.”
This post was updated 17/3/2020 to include some updated information in the context of the worsening Corona Virus pandemic. I have also removed the videos that I previously posted as the information included in some of the segments is out of date.
Please note: This advice has been prepared by way of information for patients currently under my care and should not be considered medical advice. It is not intended to replace information given to you by your own GP, advice from other doctors or replace information given by the HSE or other health providers. Please check with your own doctor or my office if you are concerned.
I am very aware that patients on immunosuppressive treatments for rheumatological conditions are feeling particularly vulnerable and anxious due to the novel Coronavirus disease Covid-19 at the moment.
Immunosuppressive treatments which include steroid medications, Disease Modifying Anti Rheumatic Drugs (DMARD’S), Biologic Therapies and certain other medications, all act to suppress the immune system. Whereas this is useful in suppressing inflammation, it may also increase the risk of infection in patients who take them. If you are on one of these drugs your risk of developing Corona Virus infection is likely to be increased.
What are the common symptoms of Novel Corona Virus Infection?
It can take up to 14 days for symptoms of Coronavirus to appear. The most common symptoms of Coronavirus are:
- a cough – this can be any kind of cough, not just dry
- shortness of breath
- breathing difficulties
- fever (high temperature)
If you have any of these symptoms please follow the following advice.
What we know so far (17/3/2020)
The risk in that you will be exposed to someone with Corona Virus is currently high.
Contact is currently defined as closer than 2 metres for 15 minutes, face to face contact or living in the same house as someone who is infected.
Most patients will have a mild illness and recover.
Risk factors for more severe infections that have been identified include age over 60, chronic heart and lung disease and diabetes.
The data from studies of the outbreak we have so far, does not identify immunosuppressive treatments prescribed in rheumatology patients as a risk factor for higher mortality, but it is a cause for some concern.
How should I protect myself?
- Wash your hands properly and often
- Cover your mouth and nose with a tissue or your sleeve when you cough and sneeze.
- Put used tissues into a bin and wash your hands.
- Clean and disinfect frequently touched objects and surfaces.
- Practice Social Distancing
- Avoid unnecessary travel
- Do not touch your eyes, nose or mouth if your hands are not clean.
- Do not share objects that touch your mouth – for example, bottles, cups.
- Stay at home if you are sick to help stop the spread of whatever infection you may have.
Is there anything else I do?
If you are immunosuppressed, you need to take extra care and be even more vigilant where all of the above are concerned.
- One way to approach your day is to pretend to yourself that you have the Corona virus infection. If you had an infection (and were fearful of infecting others) you would avoid going out, stay away from crowded areas (restaurants, pubs, coffee shops, churches, gyms and even supermarkets). If you had the infection you might avoid touching surfaces where you might pass on infection etc. If you already had an infection would wash your hands frequently to prevent spreading the virus and so on.
- If you are a bit older and immunosuppressed, and have grandchildren, you should avoid them until further notice. If you are asked to babysit say no.
- If you are at home with kids off school or college they should not bring other children into the house and encourage your children to avoid contact with other children. No play dates or nights out.
- Another really useful thing you can do is act as an advocate for yourself and other people at risk of infection by getting friends and relatives to adhere to social distancing , coughing and sneezing guidelines and hand hygiene. It is you that they should be trying to protect and you should tell them.
- Buy yourself (if you can get them) a portable bottle of hand sanitiser so that if you that you can clean your hands immediately if not close to sink.
Is there a vaccine I can get?
Please ensure that you have have received all appropriate vaccinations, including seasonal influenza and pneumonia vaccines if you are on immunosuppressive therapies. These will not prevent COVID-19, but may lessen the chance of a secondary infection and will prevent illnesses that could be confused with COVID-19.
Make sure your blood tests are up to date
One of the reasons I recommend regular blood tests is to ensure that their immunosuppressive treatments do not overly suppress their immune systems. If you haven’t had your blood tests done as per the schedule for your drug recommended by me then I would advise you do.
Should I stop my immunosuppressive treatment?
Because many of the treatments (including steroids, biologic therapies and disease modifying drugs) used in arthritis and autoimmune disease suppress the immune system many patients have asked if they should stop their treatment.
Please remember that patients who are on steroids / corticosteroids should never stop their treatment without medical advice.
Getting the balance right
The decision to stop immunosuppressive medications needs to be balanced by the risk of developing a flare or recurrence of your underlying disease. It is worth remembering that when the underlying condition flares, doctors often have to escalate therapy (often including the use of steroid medications). Treatment escalation may further increase the risk of infection. Active disease also reduces your ability to fight infection.It is a tricky balance.
Remain on your treatment unless advised to stop.
The current advice from the British Society for Rheumatology and European League Against Rheumatism around the world is to remain on treatment – unless patients have been advised by their doctor to stop.
Patients should never stop steroids without medical supervision.
What if I develop an infection on treatment?
Most rheumatologists would advise that you should you develop an infection that you should postpone your treatment (with the exception of steroids which you should continue unless told otherwise) until the infection has adequately been dealt with.
As with all infections on immunosuppressive therapy rheumatologists usually advise seeking medical attention a bit earlier the usual of for any infection that you would normally contact your GP about.
If you have any of the symptoms or Corona Virus then you should phone your GP, or local A+E department, letting them know about your condition and treatment, who will in turn refer you for consideration of testing and or treatment.
If you have suspected Corona Virus infection you should not attend your GP’s or any public or private emergency departments. Please note that The Galway Clinic is not a designated receiving hospital for Corona Virus. infection.
Additionally, if you are directly exposed to someone with Corona Virus, or someone with suspected Corona virus infection you should postpone your treatment (again with the exception of steroids) until you have been assessed to exclude an infection.
One of the questions I’m most frequently asked by patients is whether diet plays any role in the management of arthritis.
If one were to believe what they read in the papers about dietary remedies, or in the number of books promoting diets or supplements claiming to cure arthritis, one would be forgiven for wondering whether they need to take medical treatment at all.
The idea that a simple change to diet might cure, or lessen the symptoms of a disease as potentially devastating as arthritis, is attractive. It it were only that simple….
What I have done is prepare a number of videos which addresses the available evidence for the effectiveness (or otherwise) of commonly used diets and dietary supplements. I hope you find them useful.
A word of caution. You should be aware that most of the claims that are made for dietary manipulation in the treatment of arthritis are based, at best, on poor quality research. Claims for the effectiveness of diet are often made in the face of weak (or absent) scientific evidence, or even worse, in the face of scientific information to the contrary.
Any of the scientific evidence that exists for benefits of diet in arthritis relates primarily to symptom improvement. The is no evidence from any of the scientific studies carried out to date, (other than perhaps weight loss diets as a treatment for osteoarthritis of the knee) that diet can slow the damage or other reduced the negative health consequences of a disease like rheumatoid arthritis. Medical treatment will usually still be required.
Where there is evidence for the effectiveness of any given diet, it may not apply to all forms of arthritis. I have done my best to address this where I can.