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Polymyalgia Rheumatica and Giant Cell Arteritis

CORONAVIRUS/COVID-19 (13th August 2020)
SHIELDING ADVICE AND GUIDANCE


If you are clinically extremely vulnerable, you were advised to take extra precautions during the peak of the pandemic in the UK.  This is known as 'shielding'.

The Government is advising that you do not need to shield at the moment.  This is because the rates of transmission of coronavirus (COVID-19) in the community have fallen significantly. 

This is specific guidance on what will happen if there is a local lockdown in your area.

The guidance is government advice and it's your personal choice whether to follow it. 

Please press HERE for more information.

 


CORONAVIRUS/COVID 19 (April 2020)

In most people Coronavirus infection is not likely to be severe, but as you have probably heard it may be more serious in the elderly.  As a precaution, we are therefore suggesting that support groups postpone their group meetings for the moment. (We do encourage members and patients to connect on HealthUnlocked https://healthunlocked.com/pmrgcauk and our facebook page https://www.facebook.com/pmrgcauk/ or twitter https://twitter.com/PMRGCAuk)

Up-to-date infromation can be found here: 
https://www.gov.uk/government/publications

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For anyone who is concerned about any effects their medication might have on the risk of getting coronavirus, please read the advice below:

Prednisolone and other corticosteroids (steroids in common parlance) do not increase your risk of getting infection with Novel Coronavirus (COVID-19), but they do increase the risk of having a worse outcome.

Here are some simple Do’s and Don’ts:

Do’s
1.    Practice ‘Social Distancing’ especially if you are still on corticosteroids (prednisolone and similar). Some guidance on what this is and how it can be achieved is available here (https://www.gov.uk/government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults)

2.    If you develop a fever of 38 degrees Celsius or over OR develop a dry cough for more than 24 hours, do ‘Self-Isolate’. Practical tips on what this is and how it can be achieved is available here (https://www.gov.uk/government/publications/covid-19-stay-at-home-guidance/stay-at-home-guidance-for-households-with-possible-coronavirus-covid-19-infection). If you have to self-isolate and if you are on immunosuppressive medication besides steroids (methotrexate, leflunomide, azathioprine, tocilizumab), you must stop those (but not the steroids) when you develop those symptoms and urgently inform your doctor.

3.    If you live alone, agree on a plan with someone living nearby to stay in touch at periodic intervals so that absence of contact can trigger a response. If your family live far away, it may be helpful for them to have a neighbours phone number or contact details.
 
Don’ts
1.    Don’t stop your steroids suddenly. If you are concerned about your steroid dose, discuss this with your rheumatologist to help you weigh up the risk of relapse of PMR/GCA (and the consequent increase in dose) versus the benefit of improving your immune response to the virus. Sometimes the clever thing to do is to not reduce your steroids.


2.    Don’t touch your face. Often this is done unconsciously as a way of calming ourselves. While this is difficult to do, it might be helpful to develop another distraction – tapping on a table, keeping your arms crossed etc.

3.    Don’t offer to baby sit grandchildren. It may not be fair to them or to you.

 

Of course we strongly support the Public Health advice to keep washing hands and that NHS 111 should be the first point of call.
 

We would like also to share some advice from Vasculitis UK on what to do to try to avoice becoming infected/spreading the virus. This link is updated on a regular basis. It is written in sensible and understandable language and explodes any myths.


POLYMYALGIA RHEUMATICA AND GIANT CELL ARTERITIS

Polymyalgia Rheumatica (PMR) and Giant Cell Arteritis (GCA) are linked rheumatic conditions, little known by the public and poorly understood in medicine.

Causing severe pain and discomfort, the standard treatment is long term use of corticosteroids. Undiagnosed and untreated, GCA can lead to catastrophic sight loss - but this can easily be prevented if caught in time.

PMRGCAuk is a registered charity set up to meet the needs of people with these debilitating conditions, their friends, family and helping professionals.

We offer information and support at all stages - from diagnosis through to recovery. And above all, we offer hope.

Administration: 0300 999 5090 or email info@pmrgca.org.uk

Helpline: 0300 111 5090 or email helpline@pmrgca.org.uk

HealthUnlocked, our Online community: www.healthunlocked.com
Ask questions or share your experiences with others who are suffering from PMR or GCA, and who know what you are going through. 

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