Lupus Awareness Month takes place during October in the UK every year. We spoke with Mandy McCartney, a Specialist Lupus Nurse based in Leicester, about the autoimmune disorder, modes of treatment, and her tasks as a Specialist Lupus Nurse.
What is lupus and what are its triggers?
Lupus is a disease that occurs when your body’s immune system attacks your own healthy tissues and organs (autoimmune disease). Lupus can cause inflammation that can affect any of the body’s systems including joints, kidneys, skin, heart and lungs. Lupus can affect just the skin, and this is called discoid lupus erythematosus and subacute cutaneous lupus erythematosus. And it can also effect just the kidneys, and this is called lupus nephritis.
There are studies to suggest that lupus is a hereditary condition; however, there are other triggers such as certain medications, infections and photosensitivity (sunlight).
There are other risk factors such as:
- Age (lupus can affect all ages but most are diagnosed between the ages of 15–50),
- Sex (lupus is more common in women).
- Race (Asians, African-American and Hispanics are more likely to be affected).
Why it is still very poorly understood both by the public and by many within the medical profession?
Lupus is a very complex disease, and as a lot of the symptoms can mimic other conditions, there are no two lupus cases that are alike and symptoms can change over time. There are periods in a person’s disease where it can be not so noticeable and times when they flare up and it becomes more severe.
For a diagnosis of lupus to be made, the person needs to have 4 or more of the 11 classification criteria which include a combination of symptoms and blood tests.
What is the main mode of treatment for lupus, and which recent advances are there to be mentioned?
We now have a lot of research going into lupus, and we have a number of very successful medications at our disposal that suppress the immune system. We have access to a new biologic agent call belimumab which is the first licensed medication for lupus in 56 years and is used for our cohort of patients with high disease activity alongside rituximab and cyclophosphamide that are highly effective.
We have corticosteroids that can be used short-term to reduce inflammation caused by a flare in the lupus.
Hydroxychloroquine was initially used as an antimalarial; this is a very effective medication that can be used on its own or in conjunction with our other immunosuppressants.
You are one of a very few Lupus Specialist Nurses: How does one become a Lupus Specialist Nurse, and what does a normal working day look like?
I am the first Lupus Specialist Nurse here in Leicester, and I also look after the vasculitis and mixed connective tissue disease patients. I was approached for the role when I worked in research as I had some studies that recruited lupus patients and so had built up some knowledge around the complexities of the disease.
I have been in my role for 6 years now. I work very closely with three consultants, and we have established a connective tissue diseases clinic. We also have clinics that incorporate other specialist consultants including kidney, respiratory, skin and blood.
I operate a helpline that patients can ring when they would like advice, guidance and help surrounding their disease. I have clinics in which I can manage flares of the patient’s disease, changes to medication and lifestyle advice. There is an annual review clinic in which we monitor things such as a person’s cardiovascular risk, body mass index and lifestyle modifications.
A patient will have blood tests outside their clinic appointments for monitoring of their lupus. If a patient is flaring, then this needs to be actioned in a timely manner as a flare can be potentially life threatening.
Being a Lupus Specialist Nurse, to which extent do you work with patient associations, charities and other organizations?
My role was initially funded by Lupus UK so I have always worked very closely with them and have been guest speaker at their patient information days.
Here at Leicester we organize a patient information day annually for lupus awareness month, which includes a number of different specialist talks on a wide range of topics that can affect our lupus demographic such as mental health, diet, skin care and bone health, to name a few.
There is a local support group for our lupus patients that I liaise with that can help support those with new a diagnosis of lupus or those struggling with the disease.
Many thanks for your insights!