20 Years of Living with Lupus – Dominique’s Story

Thank you to Dominique for sharing her story.

I was diagnosed with lupus (SLE) 20 years ago, at the age of 32, after waking up one morning with pain in every joint. It was that sudden and fortunate, as it turned out, because diagnosis was made within 3 weeks.

I started to read everything I could to better understand lupus, particularly how the illness could progress in the long term. It became clear to me that each experience of having the disease was individual but the one thing that I kept reading about was ‘flares’ and the need to avoid having them.

I joined my local support group and I also went to a national lupus conference. I learned much about new treatments but also saw for myself the potential longer term effects on people, as many conference attendees had severe mobility problems.

I realised that lupus was something to be taken seriously. Fortunately for me, the symptoms were in the joints only, plus fatigue, and once the pain was brought under control I carried on as normal. The first medication prescribed was Plaquenil (Antimalarial) which had an adverse effect on my skin, so I was prescribed an NSAID. This controlled the joint pain and I learned to manage the fatigue through rest.

So, for the next 12 years, I carried on as normal, taking my NSAID daily at a low enough dose to control joint pain but at the same time trying to prevent gastro-intestinal problems, which I had read about. I worked full-time and then reduced to part-time work, as I brought up my widowed partner’s young children. I even learned to ski in that time!

Unfortunately, after 12 years, due to over-working and taking for granted reasonable health, I had my first ever flare. It started with a severe headache, severe joint pain, my finger-tips started to turn blue and I felt very out of breath. I urgently saw my Consultant Rheumatologist who confirmed the flare. I took to bed for a week in order to avoid a hospital admission. Some damage was done. The blue fingers became ‘vasculitis’ which I took medication for.  This was brought under control after 3 weeks of excruciating pain. My lungs had suffered permanent damage and I had to take steroids (Prednisolone) as well as immune-suppressants (Azathioprine), Carbocisteine, Ventolin and Omeprazole plus Paracetamol. Good job I have a Pre Payment Certificate!

Eight years after that flare and now aged 52, my lifestyle has very much changed. I work part-time supporting disabled young people – on a very low income but with no stress, and lots of rest. I have gradually managed to reduce the level of medication I’ve been on. My lungs function at around 50% of normal and I still experience a joint pain daily, but I get to rest a lot and this has been the most crucial factor in keeping stable.

I have a wonderful Consultant Rheumatologist and Consultant Chest Physician and I feel well cared for. Needless to say, I no longer ski…

If you would like to share your story, please get in touch!