Sally Kay, regional coordinator for the North East Lupus Group, part of national charity LUPUS UK, talks to PharmaTimes about her experience with this little-understood disease
How were you diagnosed with lupus?
I developed a rash in 2007 that spread from my fingers and hands up to my elbows. I tried creams at first but when the rash didn’t clear and my fingers and wrists became sore and aching I visited my GP.
Over three months I saw four doctors, who were all puzzled,
yet prescribed different creams. They didn't ask if there were any other
symptoms and I didn’t think to mention the weight loss, hair loss and
overwhelming tiredness, putting it down to a busy and stressful job. Eventually
a doctor referred me to a dermatologist who took one look at my hands and asked
if I was suffering any other unusual symptoms. “I’m 95 percent sure you’ve got
lupus,” he concluded.
That day a skin biopsy and blood samples were taken and
within a week discoid and systemic lupus was confirmed. I was fortunate to
receive a relatively quick diagnosis, only about four months.
Did you know about
lupus before your diagnosis?
By pure coincidence, a good friend of mine has lupus and was diagnosed years before I met her. I hadn’t really asked her much about the disease because it seemed under control and she always looked well. Apart from that I knew little about lupus.
Public awareness has increased greatly in the last couple of
years, due to work by charities such as LUPUS UK (www.lupusuk.org.uk) and also
diagnosis in some high-profile celebrities.
How did you cope with
I coped quite well. I was relieved to find out the cause of the rash and other symptoms. Although I also had dark days with the realisation I had a chronic disease and life would never be the same. The internet helped greatly with any concerns and questions, and my work place was understanding, which helped me to cope with the initial diagnosis and time off.
What are the key
challenges of living with lupus?
My main challenge is not the physical rather the psychological side. It has taken me seven years to accept I have lupus and work with my body instead of being in denial and fighting against it. I had to give up my dream job as a police dog handler because my body could no longer cope with the strenuous activity. I want to live as long and as pain-free as possible and it is my responsibility to look after myself.
Can you tell us about
Initially I took Plaquenil (hydroxychloroquine), prednisolone and mycophenolate mofetil. Plaquenil began to ease my rash and joint pain almost immediately. The steroids and mycophenolate mofetil were prescribed because my kidneys were severely affected. I didn’t suffer any side effects and the medication worked extremely effectively, with my kidney function gradually returning to normal. After two years I was gradually taken off the steroids and mofetil, and for several years I was tablet-free and had no real flares. I now only take 200mg Plaquenil daily.
Lupus can manifest in
several ways, what are your main symptoms?
Tiredness, joint pain, ulcers and hair loss.
How do you manage the
I’ve changed my role at work to accommodate the tiredness with more flexible working hours. My job is no longer physical as it took days to recover from an active shift. I sleep and rest and don’t feel guilty.
How often do you
suffer flare ups and are you aware of the triggers?
Before a flare I suffer from a sore throat, stiffness around my neck, shoulders and swelling to my wrists and ankles. There does not seem to be a pattern to the flares or specific triggers, however, if I’ve spent time in the sun my symptoms worsen. Since diagnosis I’ve probably had a small flare once a year but recently I suffered my worst flare in seven years, leading me to change my job role after weeks of pain.
Does the condition
affect your lifestyle?
I have to be very careful not to overdo things and listen to my body. I have adapted my lifestyle so I have a regular sleep pattern. But I’m able to lead a pretty normal life as long as I’m sensible.
Are you happy with
the treatment you’ve received?
Apart from at the beginning when it took a while to be referred to hospital I cannot fault the care I have received. I have regular appointments at the Freeman Hospital muscular skeletal unit in Newcastle where I am able to speak with specialists and discuss concerns and treatments and can ring for an earlier appointment if needed. We are also very fortunate in the North East to have a lupus nurse based at the Freeman who is extremely approachable and supportive.
Is there enough
information and support?
There is plenty of support if you know where to look. LUPUS UK has a fantastic website and produces leaflets and booklets, most of which are free. I took over as regional co-ordinator for the North East lupus group as I believe local support is very important. The amount of information available at GP surgeries could be improved.
What advice would you
give to a newly diagnosed patient?
Get in touch with others with lupus; talking to other sufferers is definitely the best medicine. Sharing stories and experiences is invaluable and you realise you’re not alone. Also, try to remain positive. Medicine has come on leaps and bounds over the years and new treatments are being introduced all the time. People being diagnosed now before the disease progresses too far can expect to lead a fairly normal life with a normal life expectancy if they are prepared to accept lupus and listen to the experts.
pharmaceutical industry be doing more?
Personally, I don’t believe they need to. I’ve always believed there’s a risk that patients could listen more to the industry than their own specialists. I trust that the industry is working alongside medical professionals to provide the best for lupus patients and is searching for a cure.
Lupus is a complex and poorly understood immune system illness that affects many parts of the body. It is probably genetic in origin, and is estimated to affect around 15,000 people in England and Wales, around 90 percent of whom are women.
Some types of lupus affect just the skin, such as discoid lupus erythematosus and subacute cutaneous lupus erythematosus.
Systemic lupus erythematosus (SLE) is a more severe form of the condition which can affect many parts of the body, including the skin, joints and internal organs.
SLE can cause a wide range of symptoms, the most common of which are fatigue, rashes, and joint pain and swelling. But some people are still at risk of life-threatening complications as a result of damage to internal organs and tissues, such as heart attack or stroke.
Source: NHS choices, LUPUS UK