"There is always hope, there is always help available."10 May 2020
My name is Anthony and I was diagnosed with discoid lupus over 20 years ago. It started with a spot on the tip of my nose and rashes and discolouration on my face, including my eyebrows.
One day a hairdresser asked if I’d ever had brain surgery because of the dark discoloration to my scalp. I also had indents on my fingertips. I was in my mid-twenties and didn’t understand what was happening.
For a time, I was successfully managing my discoid lupus, thanks to being prescribed hydroxychloroquine.
But four years later I started developing new symptoms. It began with night sweats; my bed clothes would be soaked. My sense of smell altered.
“I’d go to work, come home, feel so tired, and need to sleep for a couple of hours.”
I’d then wake up, have a shower and go to bed for the night. I couldn’t do anything in the evenings.
I couldn’t sleep flat. I had pillows to prop me up. My GP sent me to A&E, and this led to a diagnosis of pleurisy – inflammation around the lungs.
After being in hospital for a week I was off work and recovering at home. I was coming to the end of 10 days on ibuprofen when one day my feet were so painful, I couldn’t put any weight on them. I then started to develop joint pains everywhere.
“The slightest movement was extremely painful, and I was really struggling.”
Because of all these new symptoms I was referred to a rheumatology consultant, who confirmed I had developed SLE. This was a scary and bewildering time.
I was tried on different kinds of immunosuppressive drugs, and I eventually settled on methotrexate. I was also prescribed steroid tablets as well as calcium with vitamin D. I was still taking the hydroxychloroquine.
It then came to light that I was developing issues with my kidneys and so I was put on a drug called mycophenolate mofetil, and I was taken off methotrexate. The real plus for me was this resolved my joint pains.
As I had been on hydroxychloroquine for a long time, last year my rheumatologist stopped prescribing me it due to concern about the risk to my eyes.
“I’ve always believed in the importance of good nutrition and exercise.”
I wasn’t going to allow my condition to stop me exercising. It’s so important to keep your body mobile and fit. Exercise doesn’t just help physically, but also emotionally and psychologically.
With lupus, there can be confusion, frustration and resentment. But you have to try to understand, accept and even embrace what’s happening, before you can move forward.
My advice would be keep on top of your medication, have a healthy lifestyle, try to understand your condition and make the most of the expertise, care and help available from your healthcare professionals.
“It’s important to have a good relationship with your clinicians, but also to take responsibility for yourself.”
I’m thankful that the management teams at my places of work have been understanding when issues of my lupus have arisen.
Generally, my lupus doesn’t stop me working or enjoying my hobbies.
Have positivity and hope in your armoury. There is always hope, there is always help available, and you will have possibilities and options open to you.
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